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CommentWelcome all to the 15th vulvodynia guestbook. Thank you for your continued interest andparticipation in the vulvodynia.com website Howard I. Glazer Ph.D. vulvodynia.com websitehost
CommentYour website has provided me with some hope. I have been suffering over 2 years andtried every remedy and Dr. in a 2-state area. My next step is surgery.
CommentHas anybody else tried Flexeril? I noticed at the end of the last guestbook somebodymentioning that their doctor gave them that instead of Elavil.
CommentCan someone explain what type of foods have high levels of oxylate in them. I really amnot familiar with it. Also does anyone know of an MD or OBGYN who knows a bunch aboutvulvodynia in the BOSTON area. I just moved and need a new doctor. Thanks for all of yourhelp. I have been on Elavil for a little over a month and have seen some improvement butnot much. My OBGYN also took me off birth control but I really don't think it is helpingmuch. Does KY jelly really give relief during intercourse?? I hope all of you are findingsome relief. Candice
CommentCandice, I just want to respond to your question about KY Jelly. I was told by mydoctors that KY is the worst lubricant a woman could use. I had one doctor tell me that itshould be used to oil the chains on a bike. I use Astroglide and it seems to help me. Hopethis helps. Good Luck.
Commentcandice: Some people in past nooks have written to use crisco for lube!! I have used summer'seve lube, and it makes me feel absolutely awful! It makes me itchy, so maybe try theastroglide. Also, you can find a nonoxylate diet at branwen.com. It is really good, itgives low, moderate and high foods containing oxylates. Good luck to you and everyoneelse! have a good day!
CommentYou have to stay off the Pill for at least 6 months up to a year until you can be sureit doesn't work. Many women have found out that a great deal of their problems came fromthe birth control pill, so you should definately give it an effort. 90% of my problemswere gone 6 months after going off it. For birth control, use condoms that does NOT have any nonoxynol added to them. All thesperm-killing stuff can really irritate your vagina and cause a UTI.
Commenti have been suffering with pain and burning in the vulvar region for about one year. atfirst i thought it was nothing but sex has become painful almost all of the time, althoughsometimes it is worse than others. i told my doctor about my sensitivity and he said itwas probably from tampons. i am grateful for this site because i now see that many othrwormen have the same symptoms. i am still fearful that i may have herpes or somethingbecasue of the pain and itch but i don't think that it is possible. i am seeing my doctorin a few weeks. is there anything specific that i can tell him to make him aware of thiscondition?
CommentI have read in alot of womens comments that they feel better when they are taken of thePill. Does that also stand true for Hormone Replacement Therapy. I take Prempro. Cananyone give me any info about the Prempro and vulvodynia?
CommentI would like to know if anyone with pudendal neuralgia has ever tried the sacral nervemodulator/stimulator implant. If so, was it successful? I have tried just about everythingand am seriously considering attempting this treatment. Also has anyone else with pudendalneuralgia had any success with other treatments? My heart goes out to all fellowsufferers. We will get better some day.
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CommentHello, I just saw the question asking about the sacral nerve stimulator. I have nottried it, but am seeing a Dr. Jennifer Gunter at the KU Medical Center who is working witha urologist who uses the device on intersticial cystitis patients. There is some thoughtthat the nerve stimulator would be effective for vulvodynia patients. Most of my symptomsoccur in the pubic hair with some burning on the labia. I have had little discomfort withthe vaginal area. I truly feel my pain is caused by inflamed nerve endings. I can cross mylegs tightly and cause the the pain to begin. I am anxious to find out if I may becomepart of a test group. They can test without having to implant the device with minimalprocedures to see if any benefit is there. I will post to this site when I find out moreabout it. If anyone else out there has had experience with this please let us know. Thanks
CommentThis is my first entry in the guestbook. I'd like to say thank you to Dr. Glazer forstarting this, so that we can communicate with others who are in the same boat. My experience with vulvodynia started in July of 1994 when I was almost 28 years old.Started treatment with over the counter yeast medications and then went on prescriptionones, including a variety of creams and salves (some of which made me feel even worse, andnone of which helped at all. After seeing two gynecologists who kept trying to treat mefor your basic yeast infection, I finally made my way to a dermatologist, who wassurprised that the previous doctors had never thought to test me for an"atypical" yeast infection. That was the key word. She tested me for the"atypicals" and found that I had one called "torulopsis glabrata."(Not sure if I've spelled that right.) I was put on a treatment of Nystatin vaginalinserts and boric acid vaginal inserts, and finally was able to eradicate the yeastproblem. But, unfortunately, was left with a diagnosis of "vulvodynia." Mysymptoms include terrible low backaches, gastrointestinal problems, bladder irritation,including my stomach bloating out (feels like a bladder infection coming on, but I test"negative" for that), and your general itching, raw feeling in the vaginal area.That feeling is like "tightness, pulling, pin pricks, raw, irritated. . ." --those are a few ways I can describe it. I've been on a variety of treatments, most ofwhich haven't helped. I really don't want to mention all the things that I've tried thathaven't worked for me, as I wouldn't want to discourage anyone from trying them forthemselves. What doesn't work for me may very well be what works for you. So, the first thing I would suggest is to have your doctor test you for an"ATYPICAL" yeast infection. Apparently, that type of yeast (and their areseveral that are classified as atypical) don't necessarily "grow" immediately inthe culture; my doctor had my culture being watched for a week or two. Also, those yeastsare harder to get rid of. It took me several months to finally beat it. Guess they'refairly stubborn. But the Nystatin and the boric acid did it for me. My symptoms are not byany means gone, but definitely much improved. I've done the calcium citrate supplements, without much luck UNTIL I tried a brandcalled "PharmAssure" that I got at a "GNC" store. It's got calciumcitrate malate. That "seems" to help control the bladder pain. I've been takingit for a while and the bladder has felt good. Got slack for several days, and didn't takethe calcium supplement (and ate a blueberry muffin, which has lots of oxalates) and,bingo, bladder pain. Have gotten back on the calcium and the bladder is feeling better.(It's hard to know for sure, since all of my symptoms will flair up and down, with noapparent pattern. I've tried documenting what I've eaten everyday, what I've worn, thingslike that, to try to put some kind of pattern to it, but haven't had much luck. It seemsto have a mind of it's own. The other thing that I "think" is helping (as I said about the calcium, I'mnot sure -- i guess it could be a coincidence)is accupressure. Got myself a book onaccupressure and have been concentrating on working the "problem areas": pointsfor backache, bladder, "female" problems, swelling, and such. The book I got wasby Michael Reed Gach. I've not been doing my accupressure recently, and am now in aflair-up, so. . . could be a coincidence or maybe not. Will have to get back into doing myaccupressure routine, and see what happens. I wanted to share this information in the hopes that maybe what seems to help me mighthelp someone else. They're a couple things for you to think about. I hope that someday somebody can come up with a cure for this, because it is extremelyaggravating. And, I realize that as much pain and discomfort as I have from it, my casemust surely be considered "moderate" as compared to some of the others who havewritten. If we keep sharing information, perhaps some medical research person will finallyfigure this whole thing out. Let's not give up hope!
CommentDeb, I was wondering, when you had the "atypical" yeast infection, what were weresymptoms? Did you have yeast infection symptoms or did it you feel the same as now, justworse? I'm also taking Calcium Citrate supplements - the "Citracal" brand that dowork for some people, but don't really work for me. Does the "PharmAssure" brandhave vitamin D in it? And my last question deals with the accupressure book. What is the title of the book?It seems like something worth looking into. Thanks for sharing your vulvodynia experience in the guestbook. It gives fellowsufferers things to look into. Amy
CommentI was told about 2 years ago from my gyn that I have vulvodynia. In just changing somehabits (no jeans or underwear, hypo allergenic soaps, etc.) I was able to get some controlover it. But a week ago it really flared up, very itchy and sore in the 5 to 7o’clock region. I saw my gyn again, hoping it was an infection she could easily curewith medication. Of course she said it was my vulvodynia again. This time she said itlooks more like vulva vestibulitis syndrome (VVS). She said because she put a numbingagent on the area and it worked that there may be some hope that surgery may fix myproblem. Has anyone with VVS had surgery and did it work? Or is there anything I shouldtry for now that will relieve my pain. It has been over a week with constant burning anditching? I tried lidocaine, which is only temporary, and it usually made it worse after.Please Help! j9
CommentPersonally, I think that surgery should be the very last option. I have vulvavestibulitis and I'm on the low oxalate diet and calcium citrate pills, I've only been onthe pills for a couple of months so I am yet to see if they are working.
CommentMy experience began a year ago when I gave birth to my beautiful baby. I refrained fromsexual intercourse for 45 days after recovery. Then the first time I had sexualintercourse with my husband, it became very painful with a burning sensation, and the nextday, I was in so much pain, I could not urinate and my legs were hurting. At first Ididn't know what this was, all I felt was the burning sensation and how excruating thepain was, its like putting salt on an open cut. I went to quite a few doctors and theytold me it was yeast infection. I was prescribed all kinds of creams and tablets, did notwork. Finally I went to the OBGYN and I was diagnose as "vulvar vestibulitis"and she said there is no cure. What a thing to hear. I know this is not good for mymarriage and my sexual relationship and even to have another baby. What do I do? I wasreferred to another OBGYN and he prescribed to me an estrogen cream, that is not workingand I am still in this burning pain and the removal of the inside skin. I need someone tohelp me. Does anyone know someone in Toronto, Canada who I be referred to. My problem isstill here and needs to be cured. I sympathize with all suffers. Hope we can all behelped.
CommentAmy, Well, regarding the atypical yeast infection: I wasn't one who "normally" gotyeast infections; only one I ever had years before was right after a round of antibioticsused to treat a bladder infection. But, when I felt that something was "wrong"in July of 1994, I thought it was a yeast infection because I had more discharge thannormal, lots of itching, low backache, stuff like that. The itching was ALOT worse while Ihad the yeast infection than it is now. Right now, what I have is still some itching and"rawness" that flares up and down (but is NEVER as bad as with the yeastinfection). Still have the low backache, and now have the bladder irritation andgastrointestinal problems. But, even all of those problems will flare up and then backdown. They never go away completely, but I can definitely tell a difference at times. Justhave never been able to figure out what CAUSES the difference. As far as the calcium that I'm taking now, it's called "Calcimate Plus" by"PharmAssure"; it's got calcium citrate malate with magnesium, boron, vitamin D,copper & zinc. I'm pretty sure they make one just called "Calcimate" that'sJUST calcium (no extras). I know that I've been on two different versions of the product,because I didn't realize that there was more than one kind, and grabbed a different oneone day while shopping. I can use either one though. The accupressure book I bought was by Michael Reed Gach; it's called Acupressure'sPotent Points: A Guide to Self-Care for Common Ailments. I've really gotten alot from thisbook, even for other problems. Hope this answers your questions! Good luck to you! Deb
CommentAmy, Well, regarding the atypical yeast infection: I wasn't one who "normally" gotyeast infections; only one I ever had years before was right after a round of antibioticsused to treat a bladder infection. But, when I felt that something was "wrong"in July of 1994, I thought it was a yeast infection because I had more discharge thannormal, lots of itching, low backache, stuff like that. The itching was ALOT worse while Ihad the yeast infection than it is now. Right now, what I have is still some itching and"rawness" that flares up and down (but is NEVER as bad as with the yeastinfection). Still have the low backache, and now have the bladder irritation andgastrointestinal problems. But, even all of those problems will flare up and then backdown. They never go away completely, but I can definitely tell a difference at times. Justhave never been able to figure out what CAUSES the difference. As far as the calcium that I'm taking now, it's called "Calcimate Plus" by"PharmAssure"; it's got calcium citrate malate with magnesium, boron, vitamin D,copper & zinc. I'm pretty sure they make one just called "Calcimate" that'sJUST calcium (no extras). I know that I've been on two different versions of the product,because I didn't realize that there was more than one kind, and grabbed a different oneone day while shopping. I can use either one though. The accupressure book I bought was by Michael Reed Gach; it's called Acupressure'sPotent Points: A Guide to Self-Care for Common Ailments. I've really gotten alot from thisbook, even for other problems. Hope this answers your questions! Good luck to you! Deb
CommentHello to everyone. It has been a while since I checked in. I've accepted that thiscondition is not going away, and have been experimenting with ways of minimizing thesymptoms. Here's what works for me. Forget cotton panties. I don't wear panties at all, ormy symptoms reappear quickly. Instead I wear loose fitting leggings under loose fittingcotton pants. Air circulation seems to be key. Getting sunlight on the affected area,particularly when splits appear, helps a lot. Just keeping clean & dry wasn't enoughthough, I still felt itchy. So I tried some natural creams. What works best for me is aCalendula,Coneflower (Echinacea) & Comfrey cream. The one I use is from an Oregoncompany www.eclecticherb.com I have no connection with them, personally or professionally,I just want to pass on this info. One more thing. We ALWAYS use olive oil as a sexuallubricant, even when my "natural juices" are flowing. Thanks to theseprecautions, I'm able to have vaginal sex once every 24 hours without my symptomsreappearing. Any slack, though, and they're back. Good luck , A.
CommentI was diagnosed with VVS today after 3 years of symptoms and I can only say that I amoverjoyed that someone finally found out what was wrong with me. I'm sure the rest of youshare my experiences: endless appointments in the stirrups, doctors telling you to switchsoaps or (worse!) that you're being a hypochondriac. I'm just relieved it wasn't anundiagnosed STD. My doctor put me on Desoximetasone (topical ointment) and calciumcitrate. Has anyone out there had any success with these treatments?
CommentJanine, DO NOT have the surgery! After nine months of excruciating pain, I gave in and hadgland removal surgery in July of 1997, after a diagnosis of inflammed vestibular glands.Three weeks later, the pain returned. I found another Ob/Gyn who prescribed estrogencream, and that has worked wonders for me. However, my current Ob/Gyn doesn't agree withthe diagnosis, so I am out of medication. Are there any OTC creams that have worked,herbal or otherwise? I am currently searching for another DR. Anyone have a referral forthe Dallas/Ft Worth/ Arlington area? Also, I've noticed that several of us had months oftreatment for yeast and bacterial infections. Is this what causes vulvodynia to develop,or was it vulvodynia all along?
CommentIt has been over a year since I have checked the guest book! (Husband and I have movedover seas) I had my surgery a year and a half ago and that released a lot of the tensionbut my pain is still an every day battle. I am learning to live with it and am taking itday by day. I have been on Elivil a little over a year now. I have been working my way off(was at 150 mg each night) and now I'm down to 25mg every other night for seven days. I amexperiencing some bad side effects that are hard to explain since I have begun to wean.Has any one else experienced any with drawal side effects from weaning off Elivil? Thanks for any info. God bless and know he is there no matter what is going on in yourlife. Lisa
CommentHi everyone. I have been going to my new doctor at OHSU. She is WONDERFUL! Her name isDr. Goetsch and she reinvented the Volvoplasty surgery so that there is less bleeding,less recovery time (1 to 2 weeks), no dissfiguration, and better results. This surgery isonly for individuals who have strictly Vulvar Vestibulitis. I have Vulvar vestibulitisplus some muscle tightening and she says that surgery is an option for me. So I did someresearch and found an article that describes the surgery that she does. I'll have to findout the internet address so you all can read it. My husband and I are seriouslycontemplating it. I know I won't be completely cured because I have tenderness in otherparts of my vagina but the most painful part will be taken out. It is just an in-officeprocedure with local anesthetics so it's alot easier than the former surgery. Dr. Goetschhas a huge success rate also. I go in to see her on Nov. 28 to discuss this option. I willkeep you guys updated on how it goes. I had a thought the other night. I was wondering howmany of you were pads as opposed to tampons. I found that when I started on birth controlmy periods were alot lighter so I didn't change my pad as often. Around that time I alsoshaved my pubic hair down there (for my husband). I found that when I got vvs I would itchso bad during my period and I wonder if I am allergic to the Dry Weave material found inmost pads. I was thinking that maybe because I had no hair protection and I wasn'tchanging that often if that might have caused some irritation. So I am growing my hairback and switching to cotton top pads. I'll let you all know if that helps. Sorry this isso long. I hope everyone has more pain free days. By the way Dr. Goetsch is located atOregon Health and Sciences University.
CommentHeather and Tammi: Thanks so much for answering my questions. I saw the entries aboutCrisco but I have a hard time believing it won't irritate me. I guess I am just beingsuper careful. Well, I am going to try the diet and i will let all of you know how ithelps. I am going back to the Gynecologist in a few weeks and will mention the KY jellybit. Does anyone know of a good GYN in the BOston area. I just moved and need to find a newdocotr. Thanks and good luck to all!
CommentHere is the article on the new form of surgery by Dr. Martha Goetsch, that I wastalking about. http://www.vulvarpain.icomm.ca?goetsch_1.html Hope this helps someone!
CommentHere is the article on the new form of surgery by Dr. Martha Goetsch, that I wastalking about. http://www.vulvarpain.icomm.ca/goetsch_1.html Hope this helps someone!
CommentSorry I submitted that last one twice. The first internet address goes to the homepagewhere I found the surgery article. If you click on the Bibliography page you will findtons of articles on our disease so I guess its okay that I typed it in wrong. The secondinternet address is the actual surgery article. Sorry about the confusion. Have a goodday.
CommentTamara, I read the article and it is very interesting, but people should read it carefully. Iwill insert an excerpt after my comments. The doctor talks about differences betweenvulvodynia and vestibulitis. The surgery is suited to vestibulitis, but not vulvodynia.Read on: Vulvar vestibulitis is not the same as essential or dyesthetic vulvodynia, a disorderof cutaneous nerves, which is treated with amitriptyline. It is not the same as pudendalneuralgia or reflex sympathetic dystrophy, names offered to clarify vulvodynia or burningvulva. Patients with burning vulva have constant pain and no physical findings and mayrespond to amitriptyline. Calcium citrate therapy was associated with a cure in one womanwho had longstanding constant vulvar pain. I have not seen reports confirming this therapyas efficacious in a larger study. It is imperative to distinguish these entities becausesurgery seems well suited to treat severe vulvar vestibulitis, whereas it is totallyinappropriate in vulvodynia.
CommentI've recently been trying an over-the-counter arthritic pain relief cream that seems tobe helping. Although I have vestibulitis, most of my pain centers in a small area on theleft side of my labia -- spreads out through the vulvar region on worse days. I'mconvinced that this is some kind of nerve pain related to herpes (although some of themedical people I've seen scoff at this.) Anyway, the arthritic pain relief has been helping to minimize the burning. I put asmall amount on painful areas on the labia and further back -- not on the vestibular area.(That area gets Estrace, which also helps me.) The one I've tried is Arthritic Pain Rub made by Rite-Aid, but there are others withthe same active ingredient,10% Trolamine Salicylate (the same ingredient that's inAspercreme, which has been around for years.) The Rite Aid brand has Aloe in it, so Istarted with it. The label says you can use it up to 4 times a day -- I've been using it 2 times and itshelping. The cream doesn't burn (like capsaicin) or stink, like some over-the-countertopical pain relievers. The main doctor I'm seeing now for my VVD says it worth a shot anddoesn't see any down side to it.
CommentThanks Deb! I thinkI will try switching brands of Calcium Citrate - mine really isn'tmaking a difference, so maybe this other kind will.
CommentS Khan, I don't know of a physician in the Toronto area, but I saw on the NVA webpage,that if you call the NVA they can refer you to a vulvodynia specialist in your area. Theweb address is www.nva.org. I believe NVA stands for National Vulvodynia Association.
CommentAmy, You're welcome! I hope it helps! I, too, started out with a different brand, but itdidn't seem to help at all. This new brand seems to work much better on me. Hope it doesfor you, too. When you figure out if it helps or not, will you post a note on the guestbook? I'll beanxious to see if you have good luck with it! I'll be thinking good thoughts for you!
CommentIt has been approx. 1 yr. since I have written. I've taken some time to seperate myselfsince I started seeing my doctor 6 mo. ago. I would just like to share some of my newswith the rest of you. I was like many of you and thought that I should just learn to livewith it since I had it for about 4 yrs. But, I beg any of you who think this way to see ifany of this pertains to you. I like many of you had continuous itching and burning of thevulva, repeated yeast and BV infections, and swollen glands. Physical touch causes me towrith in pain. After having failure with 6 doctors I took a friends advice and decided tosee a vulvar specialist in Wisconsin. This is the best decision I've ever made. During myfirst visit I was diagnosed with the skin disease Lichen Sclerosis (this was the secondshe saw my vulva). Keep in mind that many doctors looked at this area and not once thought"skin disease". What makes it worse is that I even had a biopsy done about 2 yrsago saying nothing about it. My Dr. ordered the slides and said that it was completelyobvious that I had a disease. She started me on Estrace crm, then added a steroid crmafter 6 wks. I can't even beleive how much this has helped. Yes, I've been given manysteroid crms, but it was never instructed properly. The theory is that the estrogenreceptors in the vulvar are not working properly and this causes the skin to thin. Sincethe skin is thin it will not absorb the steriod properly. Along with this I was givenPaxil to help calm down the nerves (not stop the pain), and I'm on a continuos pill tostop my periods. Periods can irritate this condition. After being on this treatment I wentinto a follow up and found that my skin was healing significantly.(Bear in mind if youhave this condition it will not go away on its own, it only worsen without treatment.Without treatment it can cause skin atrophy, thinning of the skin (which is why manywomen's vulva's tear), and can cause the vaginal opening to close). No, I am not totallycured. At my f/u appoint. my glands were still very sore. She then did a colposcopy andfound that the sclerosis was also in the vagina. Which could be the reason the glands willnot go down. I just started a crm to use in the inside to help the disease subside there.In one month I should have the sclerosis under control inside and out, at this time If Istill have glandular pain I'm planning on getting my glands out. Sometime with no matterwhat you do the glands will not return to normal. I have talked to numerous people whohave had success with this doctor. She is also so warm, friendly, and understanding. Shebelieves that this is not something a woman has to live with. With a lot of confidance inmy doc, and many prayers, I'm planning on being rid of my chronic pain. This is the firsttime in the long time I have felt this way. Although the skin disease will probablyeventually flare up, I know what it is and how to treat it. I figure I have had it forabout 3 1/2 yrs. I feel lucky I found out before too much scarring was done. One otherthing, my Dr. also feels that if you have this someone else in the family does. She alsosee's this in a lot of fair-haired, fair-skinned people. After doing some research I foundout my aunt on my mother's side has it, and she is the only blue eyed blond in the family.Please take care. Be your own advocate. God Bless.
CommentThere was no choice for the age bracket in which I developed vulvodynia out of theclear blue. Your question should be modified. I was 42.
CommentCandice: I actually went to some doctors in Boston in May. They really helped me out and thepain is very miminal. I am on 4 different medications. They are located in the Boston UnivMedical Center. The number is 617-638-8959. The doctor(s) (they are sisters) names are Dr.berman. If you can not get a hold of them call the directory at The Boston UNiv( you willhave to call the directory assistance for that number.. sorry I do not have it) and askfor Irwin Goldstien. He has a seperate office (I beilive) But I know he specializes in thesame thing. Also for lubrication, I use Vagisil, whenever I am in pain and majority of thetime it goes away. Let me know how everything goes..
CommentHi everybody Has anyone wth VV ever had their estrogen levels tested by blood work? I wonder ifpeople have less than they are supposed to have. No matter what I do I am so dry, raw andirritated. I am hoping to try Estrace soon. Thanks everybody
CommentI have vestubulitis for 12 years this month, but have been symptom free forapproximately 3 months!!!!!!!! I rinse with tap water after every urination and applyCrisco solid (a light coating). I also take Calcitrate once a day and glucosamine sulfateonce a day. If I skip even one rinse there is return of symptoms within 30 minutes. Mylabial tissue is getting a little thicker (had thinning from prolonged steroid use). Ithink this is a slow healing process, but impressive after 12 years of useless teatments.Good luck! Keep trying-stay away from creams and surgery (personal opinion). Lisa
CommentHi Ladies, WOW, I don't know how long ago it's been since I checked the Guestbooks. Iput some comments in Books 4 & 5, and now we are up to 15!! I WAS a Vulvodyniasufferer for 2 1/2 years and have been free now for about 2 years. My symptoms startedafter a course of a tetracycline antibiotic. About 3 weeks after stopping the antibioticmy symptoms started. Except, I had the burning and irritation in my mouth at the sametime...a double whammy. I KNOW that was my cause. I would be interested to see how many ofyou had taken an antibiotic just prior to your symptoms appearing. My Dr told me that anallergic reaction to this medication is that somehow it affects the nerves in moist partsof the body. A number of her patients had got their vulvodynia the same way!!
CommentHi, A doctor has just told me that he believes my Vulvodynia is due to a defect in thegene that stimulates adrenaline production. The insufficient adrenaline can lead to manyphysical problems such as headaches, chronic fatigue, gastrointestinal problems,urinary/bladder problems, sleep disturbances, anxiety problems.....and vulvodynia. I thinkhe said the insufficient adrenaline interferes with neuro-transmitters? I thought Iunderstood the doctor at the time, but now I'm a little confused. Can anybody give me thelaypersons explanation of what adrenaline and neurotransmitters have to do withvulvodynia? If the doctor thought I had insufficient adrenaline, shouldn't he haveverified this through some test to determine my adrenaline levels? I was given aprescription for Elavil which, I quess, is supposed to boost my adrenaline production. I would really appreciate any explanation you all could provide. If someone knows of aguestbook entry where this was already explained, I'd appreciate being directed to that,as well. I'm usually a pretty bright person, but I think nervousness clouded my comprehension ofthe doctor's explanation. Thanks so much to all of you for listening (reading)!
CommentI recently discovered this fantastic web site and have been very interested to read theexperiences of all of you. Until now I did not have a name for my condition. I now believeI have vulvar vestibulitis. I have had it for over 6 years, having developed it late in mypregnancy. I have visited numerous doctors who never really believed me and could offer noadvice other than various creams which did not help at all. I had given up on finding asolution until I found this site. I was unaware of the range of treatment possibilitiesand am now enthused about finding one that works for me. I would be interested to hearfrom any other women who have developed vulvar vestibulitis during pregnancy. My twinswere born by caesarean so complications of a vaginal delivery can be ruled out as a cause. Lisa
CommentI will try to keep this brief ( as a sufferer I'm sure you know I could go on foreverabout vestibulitis!) I was diagnosed with the condition 5 years ago. Here in the UK itdoes not really seem to be treated very seriously and I have been offered no treatmentwhatsoever. I have only recently decided to look on the Net for info and was astounded andhow many people suffer. I have been following the low oxalate diet for about 4 weeks whichis quite hard for me as I'm a bit of a health freak and lived on Fibre and veg!! I havebeen having psychosexual councelling for 1 year which has helped but my goal is to be ableto have intercourse again ( I havent done so for 6 years) I have a wonderful partner whohas supported me through this, we have been together for 10 years and would so love a'normal' sex life. I find it very hard to get aroused but the councelling has helped. Ialso have accupuncture which has changed my life and has helped me to 'chill out' aboutsex. I have got an appointment at the hospital next week and would like to have some'ammunition' to take along. Can anyone offer me any advice on treatment that has beenbeneficial to them and if anyone has had succesful surgery I would love to hear from them.Any advice would be greatly appreciated. Thank you very much Sally sally.parker@talk21.com
CommentKeryn -I had just finished a massive course of antibiotics for a severe infectionbefore my VVS started three years ago. The antibiotics gave me a yeast infection ofmonstrous proportions, so I would definitely buy into the theory that the antibioticsmessed with my "balance." To All -I am in my twenties, have VVS, and DO NOT have psychosexual problems!!! Myhusband and I have a completely normal, healthy, enjoyable (except for the VVS) sex life.I firmly believe that VVS is a PHYSICAL problem. If we let people keep telling us thatwe're just hysterical women and that its all in our heads, we will never find a cure. Theconcept that all gyn pain can be traced to psychosexual problems is as outdated anderroneous as Freud.
CommentI ladies. I have had Vulvodynia for 15 years now and have never been able to get itunder control without medication. I am trying to get pregnant so I had to go off Elivilafter 18 months of success. I now have constant flare ups which makes it almost impossibleto have sex (or keep my sanity for that matter). Does anyone have any advice. I juststarted using A&D ointment with some success but I need all the help I can get. I am35 and running out of time.
CommentFor those of you with Vulvar vestibulitis, I just read an interesting article posted onWebMD titled Does Sex Hurt. http://my.webmd.com/content/article/1687.50227Check it out. Question, to those that have done biofeedback. How long did you have to gobefore you felt relief?
CommentCandace, there is a gyn in Boston who is very knowledgeable about vulv. vestibulitis.Her name is Dr. Stewart, and she is located at the Harvard Vanguard Copley Square officesin Boston. Her tel. # is 617-859-5250. She also has offices in Burlington and WestRoxbury. She is one of the few doctors out there who is quite familiar with VV, andspecializes in treating patients with VV. I have had some success with the differenttreatments she has prescribed. I highly recommend her, and hope that you, too will findsome success. I know the frustration of dealing with VV, as I have suffered from it forapproximately eight years. I have more info. to share with all of you, but I will have tocome back later to do so. Visiting this site is so helpful to me - reading opinions andexperiences with different treatments, references to new research, and the simple fact ofknowing other people understand what this is like. Thanks.
CommentTo Lisa M. I'm 26 years old and recently had my estrogen levels tested through bloodwork. Not only was my estrogen level depressed, all my hormonal levels were low. I'm ontopical estrace now and also hormonal replacement therapy. Showing a definite improvement,but still far short of no-symptoms.
CommentI'm just wondering what happened to the posting regarding the new website created by afellow vulvodynia sufferer? I didn't write down the information and it's no longerincluded in this guestbook.
CommentInteresting, huh? The obcenity filled post was deleted along with the one thatmentioned the new site. I'd like to know the site's address, too. I guess someone doesn'tlike competition for our pain. How incredibly petty. How incredibly sad. I hope whoeverwrote the address will do so again.
Commentwww.vulvodyniasupport.com Lets see if it stays up this time!
CommentPlease all go to the www.vulvodyniasupport.com website and sign in the guest book.Lauren is planning to send that onto Doctors and drug companies to get more exposure.
CommentWe need more and more exposure. www.vulvodyniasupport.com will help with that! I havequestions about the use of other antidepressants other than elavil for pain, anyone haveany luck? Ilona
CommentYou might want to try Neurontin-It helped me and doesn't have the weight gain effectlike Elavil. Good Luck.
CommentTo Ilona regarding other anti-depressants to try: some people that can't use Elavil canhandle Nortriptolyne -- it's another tricyclic antidepressant. My gynocologist had me tryZoloft for the pain, but it made me wacko--but she said she's had patients that had betterluck with it. Also, regarding the post suggesting Neurontin--just FYI, it's not ananti-depressant, it's an anti-convulsant. (Don't know if that really matters, but thoughtI'd clarify it.) Neurontin seemed to "take the edge off" the pain for me, butcertainly wasn't the answer.
CommentHi to everyone, I just discovered this website and by reading it I am feeling I am notalone. I was just diagnosed with some kind of "rare candida" after two years ofpain and suffering. Though they are still giving me the same prescriptions than before. Ihave been married for 3 years and I want to have children. I am really scared for somereason. Though the numorous doctors I have seen say that it is not going to affect mychild, I am still concerned...I would like to know if any of you have been able to havechildren even having this horrible problem and also if the children were born fine.. Thisis a great website, now I realized that I am not alone....
CommentDear all, I wrote a message but It was not posted. Anyway, I am not feeling alone anymore, it is hard for me to believe that there are so many women with this problem. I wasjust diagnosed with a rare kind of candida after 2 years of agony and pain. I have gonethough so many pills and creams and they have not worked out...Anyway, I have been marriedfor 3 years and I want to get pregnant but I am very scared!! Does any of you have beenable to have children during this painful problem and being able to have a normalpregnancy and the children were ok..All the doctors say that I should not be scared but Iam still concerned. All messages will be greatly appreciated. Thank you, Mary
CommentJanine, You had asked how long it took for biofeedback to help. For me, I started tofeel a difference after about one month, but it took 3-4 months before I felt really good.I was using estrogen cream and Desipramine (a tricyclic anti-depressant - Elivil made meway too sleepy) at the same time, so I don't know if it was the physcial therapy alone orthe combination of the three. I still do the exercise and am still taking the Desipramine,and I've continued to feel great - I have had a normal sex life for about 5 months now.
CommentI was recently diagnosed with IC because of frequency and severe urethral burning, butI also have extreme vulvar pain. It is constant and feels like my vulva is engorged andpainfully stimulated all the time. The physician said it was just a symptom of IC, but Ido not agree. Is there any way to distinguish IC from vulvodynia? Also has anyone beenhelped by taking Nacetyl glucosomine or 5HTP?
CommentI have had vulvadynia for almost 4 years. I have just recently started having severalgood days in a row. I take citrical 1x daily (1tab),1NAG (glucosamine), Effexor XR 37.5mgs (2xdailly) and lorazepam as needed for pain. I have recently started using Estrace cream, but not just externally. My Dr. prescribedme to use 1 applicator full at bedtime and apply it to the labia as needed. I haveexperienced the best relief since I have begun the Estrace therapy. I now use only 1mg ofEstrace internally and apply it externally daily. Hormones seem to be playing a part in this for me. I also adhere to the Low OxalateDiet, but I have been able to eat a few foods that always caused me pain recently. I hope that this helps someone suffering with this horrible pain.
CommentI have posted in the second guest book, back in June of 1997. I cannot believe how thisguest book has expanded. My story is one of success. I had ended up having surgery over 5years ago. I can remember how painful this disease was for me. The buring pain if foreveretched in my mind, but my body no longer feels it. I found help through the JeffersonCenter for Women's Specialities in Philadelphia, PA. However, my dear doctor was killed ina car accident this year in May. I almost died myself when I heard the news. From what Iunderstand the practice is still treating women. Dr. Howard Kent was my doctor. I wentthrough years of antidepressents, injections of antivirals, any treatment that was there,I did it. I finally opted for surgery in December of 1994. I'm still pain free until thisday. I think a lot of prayer helped to. I'm still a member of the Vulvar Pain Foundationto. It's been over 7 years since I found that organization. The National Vulvar Assocationis another foundation that offers women help to. Both are on the web. If anyone has anyquestions, please feel free to ask...Justine
CommentHello I need some advice. My partner is suffering from vulvar pain and its putting areal strain on the relationship. She does'nt think it is fair for me to deal with thiswith her. I just want to help.
CommentMy partner is suffering from allot of the symptoms that I have read here, It hurts meto see what she is going through. Our relationship has become strained and I want to doanything I can to save the relationship. Can somone out there give me some advice. Ken
CommentMy partner is suffering from allot of the symptoms that I have read here, It is puttinga real strain on the relationship. Can somone give me advice on how to deal with this. AllI want to do is support her. Ken
CommentI have a question for anyone on Elavil. I just started taking 25mg at night onSaturday. Around how long did it take for it to start working (if it works for you)? The first night, I became exhausted after I took the pill but now I don't seem sotired. If anyone has had success on this medication, please let me know. Thanks in advance
CommentLisaM, I was on Elavil for 3 1/2 months. It seemed to help at first (first 4 weeks). Itstopped being effective however soon thereafter. I was on 125 mg/day, and developpedscarry side effects (uncontrollable twitching). Had to discontinue taking it ratherabruptly. I am OK now, but the withdrawal symptoms were very bad. (Horrendous dreams,sleeplessness, diarhea, etc.) I must say that after stopping taking it my pain has notgotten worse. Oddly enough, I even fealt some improvement. I have decided that for me suchstrong drugs as antidepressants are not a viable treatment option. Best of luck, -Lena
CommentLena Thanks for your Elavil information. I wish you had felt better from it. I don't reallynotice any change but I just started taking the medication a few days ago. It must help some people since I keep hearing people talk about it.
CommentKen, I am sorry that you both are having to experience what you believe to be vulvodynia.But, she is lucky to have someone that wants to support her through this. I commend you onthat. You don't mention if she's already seen her gynecologist yet. If she isn't having anyluck with him/her, find a new doctor! (That was my mistake; I just trusted that my doctorknew "everything" so I stuck with him. BIG MISTAKE! I just stayed in alot ofpain for longer than was necessary.) If she tests "negative" for other problemsthat could cause this kind of pain, she needs to be sure she has a doctor who has someexperience with treating vulvodynia. Unfortunately, many of the doctors I went to neverheard of it. Hopefully, things are changing now, in that regard. She needs to see a doctorwho takes her pain seriously and doesn't give her the run around. Also, she should be tested for ATYPICAL yeast (not just the standard strain ofcandida). That was where I ran into trouble. My doctors kept misdiagnosing me and tryingto treat me with the wrong medications. Once I got the right medicine, I was muchimproved! If you will read through this guestbook, you will see that there are several options totreat vulvodynia. Some may not work for her, but others may help immensely. She should tryto educate herself on treatment options, so she'll be able to take that knowledge with herwhen she goes to the doctor. Your support will also help her tremendously. Vulvodynia is very hard physically ANDemotionally on a woman. I wish you both good luck!
CommentI have been a fellow sufferer for about 4 years now. Have tried most every option, withno success. I remember reading about vitamin c and that we should take low doses. But Icannot recall why. Also, did anyone find that birth control pills helped? I am so verydiscouraged, and so are my physicians. Thanks and best wishes to all, suffering immensely, Tami
CommentTO THE PERSON WHO WROTE TO KEN, You told ken that you were misdiagnosed and you hadrare candida. That is exactly what I have and they keep giving me the same treatment. Idont feel any improvement. What did they give you that you say you feel much better? Iwould like to know. The dixflucan and terazole did not work for me. Could you please giveme the treatments you got? I will appreciate your help and fast response. Thank you, Mary.
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CommentTo Tami, I went on Birth control pills to try to regulate hormones, because I felt better when Iwas pregnant. However, the birth control pills made me worse, much worse. I really don't know why, but thought I would share that information with you. I would be interested in how to ask the doctor about that rare form of yeast and whatexactly is the medication for it. Thanks.
CommentMary, You were requesting information on the type of yeast I was dealing with: it was calledTorulopsis Glabrata; guess it's a rare form. Anyways, my doctor (who is a dermatologist)put me on Nystatin vaginal inserts and boric acid vaginal inserts. I was on these thingsfor SEVERAL months, but they did manage to beat the yeast! EVENTUALLY! I hope thisinformation is helpful to you. Take care! I wish you good luck! Deborah
CommentHi Deborah, Thanks a lot for this information. Both the Dermatologyst and the gynecologyst keepgiving me the same medication and they keep testing me hoping that they will go away... Sothis is pretty useful. Did you get this "rare kind of yeast again" or you didnot get it anymore? Thank you for the quick reply And a piece of advice for Ken: Ken dont put preassure on your partner, just let her know that you still love her nomatter what and her problem has a solution. That is the best support you can give her, andhave a lot of patience!
CommentMary, You're welcome! I sincerely hope it helps you. After I finished the medicine, my doctor tested me several times for the yeast, but itwas GONE! What a relief that was. Truly shows you that doctor's don't always knoweverything; you've gotta just keep trying till you hit the right one! (First twoGYNECOLOGISTS couldn't figure it out! Go figure!) I check the guestbook frequently. Let me know how you make out. I'll be thinking ofyou. Deborah
CommentThanx for the ecouragment! I have all the patients in the world for my partner. I justhope she can find a good doctor for proper treatment.
CommentI have posted here numerous times over the past 4 years (That's how long I have hadthis crap) and I thought I would post again. First of all Taryn, I am 23 and have beenlike this since 19 so I know how you feel to be so young and in so much pain. I have nothad sex in 3 years...AT ALL...I have tried almost every treatment out there..including thesurgery which I shouldn't have had in the first place because I have constant pain...Wellthat of coarse didn't help, made me worse with scarring. I am currently trying Guaifenesinbecause I have FMS/CFS too...Does anyone have any experience with this medicine? Did ithelp you? I have only heard good things about it helping VV. Also, I wanted to say that Ihave been with my boyfriend for 4 years now..this all started after the birth controlpill, and he is still with me. We are getting married in April even though I am a mess. Sothere is hope for us to go on in life, even if it seems like we don't want to. I would doanything in the world to be better by my wedding...atleast a little bit better...I don'tknow what to do next if the Guaifenesin doesn't help me. I can't stand this pain anylonger. Anyway..Anyone with info on this med please email me. Hang in there everyone..
CommentSusane, My problems started also after the birth control pill..I never had a problem before (Iam 32 now) which pill were you taken and for how long? Thank you,
CommentHey everyone! After having urodynmics testing done and then seeing my specialist a fewwks later and having him poke around down there, then have sex a few days later and thenmy pap test a week after that everthing flared up. Got worse when my period started. Aftermy period was over I've been aplying benadryl cream once a day sometimes twice. Seems tohave cleared up for now. I think I find one thing that works, but then a few weeks laterthere's a flareup. Seems like it depends on what is causing the flareup and what remedy touse. Problem is have to try many different things before stumbling on the right one. Ohwell at least now I'm having a few pain free days here and there. That's better then ithas been in a long time. Take care! Chris
CommentMary, I was on OrthoCyclen. Two weeks after starting it I got my first yeast infection andthe burning never went away..Here I am 4 years later still burning..I was only on the damnthing for 4 months..I guess that was enough to do it's damage. How about you? What kind? Iknow quite a few women that the birth control pill started their pain. I wish someonewould research this more..The doctors just blow it off because my periods are normal...Iknow there is a connection.
CommentI would appreciate somone explaining the interaction of low oxalate diet and calciumcitrate-I've read some material on it but it is not clear to me. Why must the calcium betaken in such large doses (6 a day)? Thank you.
CommentHelp-how do I connect up with the egroup support group-how do I send a message out thatall could respond to? Thanks
CommentThank you Shannon and Diana. I am going to research these Drs. and then give them a tryI will let you all know how it turns out!
CommentFor over 3 years I have suffered from chronic pains down below. But it was only lastweek, whilst my local nurse was looking through my medical files, did she find a letterfrom my old gyn stating I had vulvodynia. The last time I seen this gyn was 2 years ago.Since then I have been silently suffering after he discharged me. But since finding thisletter I feel a whole lot better, knowing that I'm not going crazy! Since finding thissite I no longer feel alone, I'm not the only one and someone out there is listening.Thank you for making me feel this way - even if no cure is out there, I feel better.xxxxxxxxxx
CommentHi! My partner of 11 years found this website for me. He's more than a little motivatedto see me get better! I'm right in there with Taryn. While I feel better that there areother people out there like me, I almost think I need to go on anti-depressants justthinking about the long, drawn-out process to try and determine a cure. Especially ifthere ISN'T ONE. My problems with pain, burning, itching and skin splitting open andbleeding started after the birth of my daughter six years ago. My OBGYN at the timesuggested the pain with intercourse was "in my head." and due to fear ofintercourse after a pretty tough vaginal delivery. He suggested seeking counseling andeven a glass of wine before sex. I finally got so disgusted with him I tried a new doctor.I live in a small town at Lake Tahoe, Calif. and there are only two OBGYN offices in myarea. The new guy is great and has tried many things, including allergy medications,hormone testing, Estrace, etc. Nothing has worked yet. At my last visit I think it finallydawned on him that it could be vulvodynia. I am going back next week to see if he canfigure out something new to help. Coincidentally, I was recently diagnosed with panicdisorder. It's pretty freaky to me that these could even be remotely related. My symptomsonly occur with intercourse- not as constant as many of you- and I almost feel that I'drather live with it than go through the process of finding a cure. My sister is an OBGYNresident and has been helpful with info., but they only teach so much in school. She sayssurgery is a last resort and often does not work. Thanks for reading. I'll write back if Ilearn anything and am very receptive to ideas.
CommentNearly two years ago, when I met my boyfriend, I began to get pain during intercourse.It took months to get worse and it wasnt until six months ago that I formally admitted tomyself that something was not right. I went to two doctors, the second LUCKILY realisedand refered me to a local specialist. He was an arrogant guy and proud to be a specialiston such a condition, which he believed stemed from over use of Thrush/Candida creams andwas the receptors over reacting. He prescribed me a steroid type cream to be applied threetimes a day. He said I was one of the worse cases hed ever seen. Not having been given a convincing arguement to why that cream should work, and findingit extremely undignified to apply, I stopped using it. This is when I discovered Dr Christiane Northrup's WOMENS BODIES-WOMENS MINDS whichlooks at modern medicine with a view that our bodies intuatively know what is wrong. Italso explains that 80% of our bodys immune cells are mucosal cells such as in the vaginaand that the function of these cells are highly influenced by stress hormones. This made me think. Perhaps my body was telling me something that I didnt want to hear.Perhaps my boyfriend and I shouldnt be having sex. So we broke up- a radical step that Iwouldnt recommend. EXCEPT that three months ago I was screaming with pain in the doctorschair, and today I calmly said 'oooh it hurts a little bit'. Clearly I was on the mend. Why did I break us up though- couldnt I have just abstainedfrom sex for a while? NO. I knew it was more than coincidence that the condition arosewhen I met him. In fact I had one beautiful affair in the middle of the relationship withno pain at all. Ive submitted this because it is another possible path to try. And best of all it isdrug free and natural.
CommentNearly two years ago, when I met my boyfriend, I began to get pain during intercourse.It took months to get worse and it wasnt until six months ago that I formally admitted tomyself that something was not right. I went to two doctors, the second LUCKILY realisedand refered me to a local specialist. He was an arrogant guy and proud to be a specialiston such a condition, which he believed stemed from over use of Thrush/Candida creams andwas the receptors over reacting. He prescribed me a steroid type cream to be applied threetimes a day. He said I was one of the worse cases hed ever seen. Not having been given a convincing arguement to why that cream should work, and findingit extremely undignified to apply, I stopped using it. This is when I discovered Dr Christiane Northrup's WOMENS BODIES-WOMENS MINDS whichlooks at modern medicine with a view that our bodies intuatively know what is wrong. Italso explains that 80% of our bodys immune cells are mucosal cells such as in the vaginaand that the function of these cells are highly influenced by stress hormones. This made me think. Perhaps my body was telling me something that I didnt want to hear.Perhaps my boyfriend and I shouldnt be having sex. So we broke up- a radical step that Iwouldnt recommend. EXCEPT that three months ago I was screaming with pain in the doctorschair, and today I calmly said 'oooh it hurts a little bit'. Clearly I was on the mend. Why did I break us up though- couldnt I have just abstainedfrom sex for a while? NO. I knew it was more than coincidence that the condition arosewhen I met him. In fact I had one beautiful affair in the middle of the relationship withno pain at all. Ive submitted this because it is another possible path to try. And best of all it isdrug free and natural.
CommentI know that many people recommend using no soap on the vulvar region, however I feelbetter when I do use soap, especially during my period. A really, gentle, mild soap thatmy obgyn recommended is Aveeno. It's fragrance free and in fact, it's not even a soap atall - its primary ingredient is finely-milled oat flour. If anyone is looking for agentle, non-irritating soap to use, I recommend Aveeno.
CommentI was wondering how many Vulvodynia sufferers who post on this board are alsoPerimenopausal or Menopausal. I've been taking Black Cohosh to ease anxiety and it worksvery well. Lately though, I've had more vulvar burning and I'm wondering if the BlackCohosh is contributing to that burning. So, I've stopped taking it for a few days to seeif the burning eases up. Let's hope so b/c meno symptoms are horrendous also. I wish allof us pain-free days. Sue
CommentThis message is for Deborah. I was interested when I read about your atypical yeastinfection. I have been suffering from a severe yeast infection for 2 1/2 years now. I'veseen over half a dozen different doctors who keep trying the same treatments over and overagain even when I tell them that those treatments haven't worked in the past. I'm tired ofstarting over with new doctors who think they know everything and refuse to listen to me.Luckily, I have found an OB/GYN who will at least listen to me and is willing to try mysuggestions. Therefore, I was wanting to know more about the treatment that finally workedfor you. I know you said that you used Nystatin vaginal inserts and Boric Acid inserts forseveral months, but could you be more specific? What was your rotation schedule? How longdid you use the Nystatin before switching to the Boric Acid and vice versa? And for howmany months did you keep this up? I am desperate to be "normal" again and to geton with my life. Any information would be greatly appreciated.
CommentDear Deborah, This is Mary. I finally went to my dermatologist and she said that if the difluxcandoes not work, they are going to give me the boric acid inserts and the nystatin. So Iwill try the same thing that you did but unfortunately I can not start it until they havethe results of the culture again that they did today. Too much burocracy! they want tomake sure I dont have it but who else better than me to tell them that I still feel thesame way!! So we will see. I hope that this helps me as much as it helps you. Thanks a lotfor your response, it has given me hope Mary
CommentHi Suzanne SOrry took me so long to answer you back. The birth control pills I took were two:OVCON-35 LEVLEN The fist one I took it for 7 months and I asked the doctor to change it since I gotreally depressed and the second one I took it for two months. That was enough to ruin mylife. Since then, I have always had problems. Finally they had detected this atypicalYeast after two long years. I also know there is a connection between the birth controlpill and this horrible problem.
CommentHi Suzanne SOrry took me so long to answer you back. The birth control pills I took were two:OVCON-35 LEVLEN The fist one I took it for 7 months and I asked the doctor to change it since I gotreally depressed and the second one I took it for two months. That was enough to ruin mylife. Since then, I have always had problems. Finally they had detected this atypicalYeast after two long years. I also know there is a connection between the birth controlpill and this horrible problem.
CommentLADIES: I am 22 and have had dyesthetic vulvodynia since August 1998. Like many of youI have no idea what caused this. I was on ortho-tricyclen unitl Jan. of that year. I havenever had regular periods. That was my main reason for being on it. Before I was on thepill I would get my period 2 or 3 times a year. Well in the beging of this year I tried adifferent king of pill to regulate my periods. When I went to the dr.s in Boston, theytold me to get off of it cuase my testostrone leverl was very low. So I did and I havebeen using cream that they have given me. They seemed to help, but I got sick and tyiredof it and have not been using them that much. HERE IS SOMETHING ALL OF YOU WANT TO THINK ABOUT.. I recently went to the chiropractorwith my husband. The Dr. began to ask me if I had headaches. All I was thinking was I donot want my body cracked liked that. (I kinda of knew the Dr.) He examined me by bendingmy body all different ways. He told me to bend down to toward my toes, I could not go asfar as I should without feeling a little bit of pain. Then I bent my neck a certain way, Ihad a little bit of pain doing that also. He said it seems like you are having nervepain...(I thought to myself the pain I deal with everyday is nerve pain) Well he took somexrays for me. I came back the next day to realize that my spine was all messed up and Idid have pain in my neck and low back. (I was not going to tell him about my everyday paincause I figure it was pointless and I only met him a few days ago, but I decided after allthe pap smears I had and all the crap I have already dealt with I thought it was worth atry) I told him about it and gave him a paper with information. He then said I do notthink that I can help you with that pain. I then got my body cracked for the first time.(It did not hurt). I went back for the next treatment the following day.. He said at the time I have heard about this it was called a different name. Thistreatment may or may not help. After the second treatment I began to feel relief. All hewas doing was correcting my bones in my spine and neck. That was what was causing thenerve pain in those areas. I also believe that is causing my vulvodynia. I had threetreaments and I has sex with my husband since the first time I have had this WITHOUT PAIN!I have only had pain about 2 or 3 tines today for a short bit. The pain has not gone awaycompletely and I still have painful sex, but I have only had 4 treatments and to correctmy bones I have to go 6 weeks, three times a week. The dr. showed me a diagram of the spine and the nerves and what nerves cause pain incertain areas and what organs are deal with that are of pain. Well low back pain (you donot have to have it all the time or very often) causes menstrual problems and frequent orpainful urination (I have both and the dr.'s did not know why..) And this area also dealswith the sex organs and the bladder. I have made my conclusion that this has caused my pain and my problems all along. Ibelieve that this will make majority of my pain go away or cure me and hopefully regulatemy periods. If any of you have any questions please feel free to email me. If you live in MAine andwould like to be reffered to him let me know.
CommentFinally! I've looked everywhere for a place like this! Others that know our pain,frustration, and sometimes - hopelessness. On my good days I know that there has to be anatural way of healing this condition. I was diagnosed with a condition called"squamous vestibular papalmatosis", several months ago. I felt relief anddisappointment all rolled up in one. The OB/GYN told me that he had seen this conditononly once before in his practice, and that there really was nothing that could be done.Well, I walked away scared that I would have to live with this pain forever - but becamedetermined that I would find a natural way to heal or at least relieve symptoms. I've hadthis condition now for over 3 years, with the diagnosis just coming a few months ago. Mostdoctors, as many have said before me, seem to misdiagnose. I'm like others where theredoesn't seem to be a set pattern to when it flares up. Somethings that seem to help so faris : never washing with soap in the genital area, only using tipid water and my hand, nota cloth, rubbing is so irritating; aloe vera gel gives some relief, using nonlatex condomsfor intercourse; and when it's really flaring up, I spend several minutes a number oftimes each day just sitting in a basin of cool water, sometimes adding baking soda to it.I have found so much info that I'm hoping to put into practice here from all of you -thank you! I'll be back soon, what a wonderful way to not feel alone in this condition.One comment to Ken who's partner suffers from this condition - what a wonderful thing youhave done. Reaching out to help her and yourself - my husband has been so very supportivealso - I think that the best thing that he has done and can continue to do is to keeptelling me that we will find something that will help. He tries to keep me thinkingpositively, when there's hope - you endure. Deb
CommentHello every one again (3rd time i think), I just want ask if there is any one withchroinic skin inflamation and REDNESS and swollen vulva and had no help from biofeedbackand steroid cream? thank you for any suggestions all the best to you all
CommentHello every one again (3rd time i think), I just want ask if there is any one withchroinic skin inflamation and REDNESS and swollen vulva and had no help from biofeedbackand steroid cream? thank you for any suggestions all the best to you all
CommentMary: I wish you the best of luck! Keep us posted as to how you make out. I finally beat this yeast out of sheer stubbornness: I wasn't going to accept the"we can't find anything wrong with you" response from my other doctors. Don't give up hope! Jennifer: I will go home tonight and try to find all my prescription forms from thatround of treatment so that I can give you an idea of how long I was on the boricacid/nystatin combination. I'll write back to you tomorrow - I promise! Deborah
CommentElavil question again, To those of you who found Elavil helpful, around how long did it take for some relief?I started it about 10 days ago and don't know if that is way too soon. Estrace question again My GYN told me that Estrace has only helped her patients that were perimenopausal orpost menopausal. However, I noticed from all the web sites that Estrace is being used bypeople younger than that. If you are in your 20's or 30's and Estrace has worked for you,please let me know! Thanks! LisaM
CommentTo LisaM. I started taking Elavil eight days ago. My doctor told me it would take a month to feelany effect, but that may be because he prescribed a graduated (and low compared to whatI'm hearing from others) dosage. I started on just 10mg for the first week, 20mg for thisweek, and will take 30mg per day thereafter. If you're taking a higher dosage, maybeyou'll get relief sooner. I'm hoping to get relief, but avoid side effects with the lowdosage. Good Luck to you...hope it works for both of us!
CommentHello! First time contributing; what a relief to find such a helpful website! I'm arelatively short-time sufferer compared to some of you ladies, I'm entering my six monthof this condition. If any of you can answer my questions, I'd be most grateful. I have never suffered from a vaginal infection in my life, but I've had two bladderinfections in the past nine years. I recognise the pain associated with them. I developedone in May of this year and took Keflex for it. Within 11 days I went from a gal who hasregularly used a pantiliner daily because of a healthy amount of discharge to NOTHING ATALL. This was accompanied by extreme pain and redness in my vulvar area. My family doctorthought it was yeast, tried the meds., no improvement. A culture showed e-coli growth,acourse of Cipro fought the infection but made me terribly ill. The soreness of my vulvacontinued. Boric acid suppositories made me extremely ill (pelvic pain and nausea).Irregular periods began, as did a return of a *tiny* amount of normal discharge. Came downwith another e-coli infection in Sept., GYN. didn't notify me so I went to my familydoctor two and a half weeks later for another culture, e-coli was gone! Developed anotherbladder infection during my period in Oct., went on Macrobid. It cleared up the infectionbut I'm still suffering form the same pain I've had since May. My new GYN. has taken bloodfor hormone levels, everything is normal! She has prescribed a creme called Mycolog, haveany of you used this creme? I don't want to use it if it will be detrimental. Sex andurination aren't painful for me, I just have this pain in my pelvic area and a burning,itching sensation in my vulva. My main concern is if any of you found your dischargeaffected by this condition. I believe if I could have my normal discharge return, thingswould get better for me. Do any of you know of a good doctor in the Southern California(Orange County) area? I think I need to see someone who is experienced in diagnosing thesecontiditions and who will perform the appropiate tests. Thanks to all, I wish you the very best, Sandee
CommentHi, I have been talking with my doc at the KU Med Center and the subject of Botoxinjections was mentioned as a possible study to be conducted for our condition. Botox ismade from the poison botulism and use in very low, very controlled amounts is used byplastic surgeons to reduce wrinkles. THe poison paralyzes the muscles/nerves and allowsthe skin to relax. I would recommend gong to www.lycos.com and search botox injections. Itshould cross reference quite a number of articles. Take a look at article number 5"Deadly Poison Helps Low Back Pain" and number 24 "The Science BehindSubstance P". They are also using botox to give relief to migraine sufferers. Ibelieve there my be potential for us to receive some benefit too. I will be in contactwith my doc in the next few weeks and report back anything I find out. If anyone else hasheard of this please let us know. I know this is long but it is the first new thing I haveheard about that seems to have some science backing it up. I believe we can leave no stoneunturned and no ideas not considered. Thanks, Jean
CommentJENNIFER: You were wondering about the boric acid/nystatin treatment my doctorprescribed for me. . . My dermatologist diagnosed me with an atypical yeast called "TorulopsisGlabrata". She presribed for me: Boric Acid vaginal inserts (600 mg) -- one (1) capsule vaginally each morning (shecalled this prescription into my pharmacy; they special-made the boric acid capsules forme) AND Nystatin vaginal inserts (100,000 U) -- one (1) tablet vaginally at bedtime eachnight So, I was using these products together: the boric acid in the morning, the nystatin atbedtime. The best I can tell from trying to reconstruct my prescription forms is that I was onthe nystatin for about 4 months (it was like 16 weeks) (1 tablet every night). After I finished the nystatin, my doctor had me remain on the boric acid -- I'M NOTSURE, but I THINK it was for another couple of weeks. EXCEPT, IF I REMEMBER CORRECTLY, Ithen used TWO boric acid capsules a day (one in the morning, and one in the evening). I wish I could be more specific, but this was several years ago, so the memory hasfaded a bit! (I've been through so many different treatments, I feel like a walkingdrugstore!) But, I hope this helps you out. Run it by your doctor, and see if he/shethinks this program might work for you. I guess there are SEVERAL different types of"atypical yeasts," so I'm not sure if the nystatin/boric acid will work on allof them, but your doctor should know that. I'm also attaching a couple of web sites with reference info about boric acid. I guessthat you can make the boric acid capsules yourself, but they CAN have side effects, soplease be sure you ALWAYS set up a treatment program with your doctor. (As I said earlier,I DIDN'T make my own capsules; I preferred to have a PRESCRIPTION called in by my doctorand made by my pharmacist -- (I had ENOUGH problems; I didn't need to create any moreirritation or problems!) :) http://www.healthwell.com/healthnotes/Supp/Boric_Acid.cfm Keep us posted on your progress. Deborah
CommentDeborah, Thank you very much for all of the information. I am currently working on aprescription for Lamisil that my doctor wrote for me. It has helped more than anythingelse so far, but I can still tell it's there. If I finish the Lamisil and I'm still notcured, then I will be sure to discuss your treatment with my doctor. Thanks again!!
CommentDeb, I tried the PharmAssure Calcium Citrate Malate that you had mentioned in your entryfrom 10/20. (The regular calcium citrate hadn't worked for me either.) I've been on it forabout 2 weeks now. I think it may be helping a bit. Thanks for the recommendation! The other thing is that I read Shannon's entry from a few days ago. She had a lot ofgood information in it. I had heard once before about how spinal alignment can be a causeof some women's vulvodynia. I guess that the spine being misaligned can pinch certaingroups of nerves and cause all kinds of dysfunctions. When I looked back at your 10/20entry to get the calcium citrate info, I noticed that you said you had other problems inaddition to vulvodynia - low backaches, gastrointestinal problems, bladder pain. Have youheard of ppod - pelvic pain and organic dysfunction? Ppod is a disorder characterized byvarious combinations of symptoms of chronic pelvic pain, and various disturbances ofbladder, bowel, gynecologic and sexual function - vulvodynia included. Sometimes the onlysymptom of ppod is vulvodynia. There's a really interesting website that a fellowvulvodynia sufferer referred me to - it's www.ppodsyndrome.com. It might be worthwhile tolook at if you haven't already. Take Care, Amy
CommentAny of you that have used boric acid capsules did you have any reactions to them. Iblistered so bad that the blisters would weep and when they broke open it would feel likeI just peed in my pants. I have extremely sensitive skin and do react to alot of differenttreatments. Just wondering if anyone else had reactions. Better days to us all. Chris
CommentHi , I just checked out the PPOD web site and thought it looked interesting until Itook the questionare for a self diagnosis. I only checked three symptoms and the pointtotal was enough to put as a likely PPOD sufferer. Reading about the treatment wasconfusing until you get to the cost part. It was very clear it is very expensive. Soundslike a chiropractors scheme. It's just my opinion, I could be wrong. jen
CommentHi, I was just wondering if anyone has linked any of their symptoms to herpes. I knowthat the first thing our doctors do is rule out STDs and I had all the tests - allnegative too. But I occasionally get irritation under my pubic hair and and sometimes a"pimple". I know that herpes can sometimes involve the nerves as well so Istarted thinking that some how that might be an underlying cause for some of mypain/irritation. I, of course, would rather not have that be my diagnosis, but I am justtrying to get some answers!?! Does anyone else have similar symptoms and also think nerves are tied in? Thanks!
CommentGreat website! It's been awhile since I visited here, but I have been having moreproblems with vulvodynia these past few months. Starting this year, I have started to havevestibulitis problems, including red, swollen areas that are quite painful to touch. Ihave been having lots of yeast infections as well and can't seem to get rid of them. Havehad major problems with yeast infections since I was 13. I am 22 now. I am on a verylow-sugar diet which prevented yeast for about a year or so, but the yeast is morefrequent. I need to start taking acidopholis and garlic tablets again. Also have verypainful periods, heavy, tired, feverish. Does anyone else with vulvodynia have severeproblems with menstrual pain and other symptoms I described? I will be moving to Lincoln,Nebraska in January. Does anyone know of a good gynecologist in the Lincoln or Omaha areathat they can recommend to me? Please contact me by email. Thank you.
CommentJENNIFER: You're welcome! Hope your doctor is able to help you soon. I know what itfeels like to be in pain and feel like no one can help. Hang in there! AMY: Thanks for the tip! I'll be sure to check that website out!
CommentI am going to repeat my post as of about 4 weeks ago(?). I have been taking effexor37.5mg twice a day and calcitrate 1-2 times a day, glucosamine sulfate 1-2 tablests a day,and rinsing EVERY time I urinate (with tap water). Sometimes I apply a thin layer ofCrisco solid shortening if my skin feels dry down there. I have been essentially symptomfree now for about 5 months. I have had two minor setbacks that responded nicely to onedose of diflucan. This is after TWELVE miserable lonely years with vulvodynia andvestibulitis. I urge all of you to try this before using any other creams and definatelysurgery. Thanks for reading and good luck--Lisa
CommentHi, Lisa, just so I understand completely, do you have primarily vv or a generalizedvulvodynia involving the entire pubic area. Thanks, Jean
CommentThis message is for Lisa who was inquiring about using Estrace crm. if you are younger.I am 25 and have used estrace for 6 mo. It has helped me tremendously. My skin was sothin, and raw before I started it. I wrote a long message about my treatment about a monthif you want to read about what my full treatment is. The theory is that the estrogenreceptors are not working properly, which in turn causes the skin to thin. Once my skinthickened, which it did after about 3 mo. of treatment, I added a steroid crm. The steroidcrm. will not work if your skin is not healthy. I'm using the steroid crm. because after 4yrs. I was diagnosed with lichen slcerosis. Hopefully this will help you out.
CommentMary & Suzanne, Just read your posts and wanted to chime in. I also think the pill was responsible formy VVS. I've gone on the pill twice, and both times I became very depressed and thenstarted having burning. The first time was pretty mild, and went away after about 4 years(I was on the pill for 4 weeks). This time around it is a lot harder to deal with. I wentoff the pill about 6 months ago (again, I was only on for about a month). I'm hoping thatI can recover again. I think there is definitely a link between the two. Erica
CommentThis question is for Deb: I was wondering if you have gone back for a test to see if you're suffering from thesame yeast you were battling a few years ago but maybe it's in smaller quantities now? I'mcurious because my Gyn. prescribed Mycolog to treat my symptoms, which has the sameingredient (Nystatin) as the suppositories you used. Just some general thoughts: I've decided to give this creme a try, I hope to report back with some positive news. Irealize from reading the posts here from so many different women that our symptoms seem tostem from different causes. Some ladies have obvious nerve damage, other seem to sufferfrom severe allergies. I'm so frustrated that my symptoms appeared after using Keflex,because I've used several different antibiotics in the past with quick recovery and no illside effects. A day hasn't gone by since May that I haven't regretted taking that courseof Keflex. I only hope more research is going to be conducted on the effects ofantibiotics on women, because we seem to be suffering from some pretty upsettingconditions following the use of them. I thank God my children have been able to fight themajority of their illnesses without the help of antibiotics, I hope this will continuethroughout their lives. Sandee
CommentHello, I have a group called interestitial cystitis and chronic pain . I have severalpeople in there that have Vulvodynia and would like to know does anyone else have thatproblem? Having IC also. Thank you URL
CommentI have now had five treatments from the Chiropractor. And most of the day I go withoutpain.(I have had one day without pain). The pain I now get is not as bad. I can notbelieve how much relief I have gotten. I will keep you all updated.
Commenti am 29 years old and was diagnosed with vulvodynia 2 months ago. my symptoms areitching, occasional pin prick stabbing pains and slight burning. the worst symptom is theterrible pressure i feel in my bladder. i have no frequency, but it just feels like i haveto "go" all the time. anyone else? does anyone know of a competent doctor in the EASTERN PENNSYLVANIA/MARYLAND region? ilike in york, pa and am having a hard time finding a good doctor who knows what thisdisease is. my current doctor said i have 3 options...1) doxycylcine and premarin cream 2)do nothing or 3) surgery. he doesn't give me much hope in the medical profession. amy
CommentAmy, a wonderful place to begin would be to see the vulvar pain specialist inPhiladelphia who works at the urology department of Graduate Hospital. She is an NP andher name is Susan Spadt. You can get the number from information
CommentSANDEE: Just responding to your question about the atypical yeast. After I finished mynystatin/boric acid combo, my doctor did retest me (a couple times if I remembercorrectly) for the yeast, but it was gone. I had asked her to do this because I wasexpecting to feel "perfect" again once I got rid of the yeast. (Who knew I'd beleft with the title "vulvodynia sufferer?") But, anyways, my symptoms, while notgone completely, were GREATLY reduced. I have flareups: usually all at once, too. I mean when my lower back starts to ache(feels like a combination of having menstrual cramps and the pack pain from having slepttoo long, you know what I mean?), I usally ALSO get more discharge and itching andrawness. They seem to go hand in hand. Also, feel worse when I have my period. ANYONE ELSENOTICE A CHANGE IN THEIR PERIODS WHEN THESE PROBLEMS FOR YOU STARTED??? Mine is fairlynon-existant now. One or two LIGHT days, and it's done. Strange for ME. Not the way I usedto be at all.
CommentAMY: Vulvodynia sufferers have LOTS of different options. I've NOT had the surgerydone, but I would DEFINITELY get more than one opinion (and research your other optionscarefully!) before I'd do surgery. I, too, have the bladder pain. Has your doctor recommended the low oxalate diet/calciumtreatment method to you? Talk to him about that. There's lots of info on these guestbooksabout that; also lots of info on the web.
CommentAMY: Vulvodynia sufferers have LOTS of different options. I've NOT had the surgerydone, but I would DEFINITELY get more than one opinion (and research your other optionscarefully!) before I'd do surgery. I, too, have the bladder pain. Has your doctor recommended the low oxalate diet/calciumtreatment method to you? Talk to him about that. There's lots of info on these guestbooksabout that; also lots of info on the web.
CommentHi Deborah, I have the same problem when my period comes. Two days before and during my period, mysymptoms get a lot worse. There is a lot more burning and itching. I recomend you to takean over the counter pill call "uristat" so when you have to urinate, it does notburn the skin that much. You get them over the counter and they are red.
CommentMARY: Thanks for the tip! It is so nice to be able to come here and "bounce ideas off each other" andjust "talk" to someone who understands. We're all in the same boat, so to speak,and it's nice that we can be here for each other. Something really strange happened to me recently. I found out a co-worker(!) alsosuffers from vulvodynia! What are the odds of that?? Wonder if I took a "survey"here, how many others I would find! Seems like it gets easier and easier to find a fellowsufferer. Sure wish the medical community would hurry up and find out what actually causesthis and how to cure it for good!
CommentHi, Does anyone use the Real Time Chat option? I have found it really hard to get into.It keeps telling me I have not registered and when I do it over, it tells me they willsend an e-mail to confirm and they never do. It seems like a lot of the guestbook entriescould be easier addressed and quicker to respond to some of the questions and answersgoing between individuals using the guestbook. Just a suggestion; especially if youcontacted through e-Mail and designated a time to be on Real Chat at the same time. I justhope my feeble brain can figure out how to get registered. Thanks!
CommentMy name is Tami Hinden. I am an acupuncturist at the Sound Shore Medical Center in NewRochelle New York. I am conducting research on the efficacy of acupuncture in thetreatment of vulvar vestibulitis syndrome. I am seeking volunteers formally diagnosed withvestibulitis to participate. Volunteers will receive two, one hour acupuncture treatmentsper week for a total of eight weeks. All services are offered at no cost to volunteers. Ifyou are interested or know anyone who may be, please have them email me at the addressabove. Thanks for your help. Tami
CommentHi ladies. I am sorry for all of your pain. It is very frustrating! I was hoping to doa bit of comparsion to help differentiate cause and treatment options. I am 25. Myproblems began when I got a severe yeast infection about a year ago. I used an OTCmedicine and it seemed to go away after about a week and a half. Except after that,intercourse with my boyfriend was very painful (burning, swelling) especially with contactwith semen. I went to the GYN for a full workup (which was fine) except that he said I hada bacterial infection that was causing my problems--he put me on antibiotics, but after3-4 weeks I was still burning during intercourse most of the time. Luckily, this partnerand I broke up shortly there after (scum bag) and I didn't experience pain (or sex) for3-4 months. When I started being intimate with my current boyfriend, everything was great,no pain whatsoever. About 1.5 months later, however, I got another yeast infection,treated it myself, but again felt the horrible burning swelling with sex. New doc said Istill had yeast present and put me on diflucan and tetrazole? for a few weeks. Since then(six months ago), I have had pain with sex most of the time, been back to the doc 3 timesand he said NO yeast or bacteria and he doesn't know what is wrong. Also, the most recentepisode has been accompanied by mild burning, itching and slight stinging stabbing pains(outside of sex) Found a new doc who put me on 2 week oral anti-fungal and againtetrazole. I think this cream has made me worse. Anyway, I am trying citracal,glucosamine, and vitamin E oil. I was hoping someone with similar symptoms and origin asmine has some advice or insight. Also, just out of curiosity, how many of you have beendiagnosed with HPV or any other viral conditions (herpes?)
CommentDeb- I'm sorry to hear you were left with the symptoms of vulvodynia following yourtreatment. You certainly have contributed some helpful info here, though! It's interestingabout your co-worker. I really believe more women are going to be diagnosed with ourparticular form of vulvodynia in the years to come. It would be so nice if a cure wasfound, and what about more clinical studies to study the symptoms and their causes? Itseems as long as we're having to rely on antibiotics and antifungals for our health we'regoing to develop these life-altering diseases. I wonder sometimes just how many women weretested before these products go out on the market. I think the drug companies should sharesome of the responsibility for treatment and research. I'm still frustrated though aboutthe high dosage my doctor perscribed for my course of Keflex. According to many web-sites,I was taking twice what is generally recommended. I pray and hope my body will recoverfrom the damage done to it. Now for the women out there who are in the same boat as Deb and I, I was wondering ifyou think our form of vulvodynia will one day be included in the list of autoimmunediseases. I'm asking this because my aunt, mother, brother and sister all suffer fromdiseases related to a over-active immune system. I was wondering if I would develop any,and now here I am with a condition that leaves the majority of the medical professioncompletely puzzled. Wonder when some developments will be made in healing our immunesystems? I believe this would be the answer for our unexplained condition.
CommentI just discovered this board after doing some research on the web. I am convinced Ihave vulvodynia, even though I haven't been diagnosed. Since August I have had threeantibiotic courses including Levaquin, Penicillin and Flagyl. I have also have a hx ofsebaceous cysts on the vulva which my MD has removed in the office over time. Theantibiotics were prescribed after I complained of pain, reddening of the area, burning,etc. after she drained these cysts. For 5 weeks now I have these symptoms on a dailybasis. I do not have an infection. I will try some of the suggestions such as Citracal andglucosamine. Meanwhile, I'm looking for an MD in the Long Island New York area who isfamiliar with vulvo dynia. Would appreciate it if anyone has a recommendation. Thanks somuch for this website.
CommentHas anyone found a good, compassionate Gyn. in the San Diego area? Please post if youhave. Thanks in advance.
CommentI've just spent about two hours reading some of these postings and crying through someof them, too. Some of them sound like I could have written them and some of them aresimply scary. About five years ago, my pap smear came back abnormal. I always get yearly paps andthey were always normal. I know now that it should have been re-tested within threemonths, but then I did what the doctor said. He did a colposcopy and said that I had HPVbut not the strain that had warts. I specifically asked him if I had warts and he said no,that there were many strains of HPV. He gave me the choice of a LEEP procedure or a newtreatment he had been looking at using EFUDEX cream. I asked him which he would recommendfor his wife if it was her and he said the Efudex. He must not like her very much. Anyhow,if any of you know about Efudex, it's not even meant for that part of the body. It's forskin cancers on the outside of your body and hasn't even been approved for anything else.It's been since then that the problems started. I quit going to him (surprise) and havebeen through two other doctors. I'm going to my third next month. Nobody listens...I'mtold it's a yeast infection or bacterial vaginosis...beta-val (steroidal cream) andPremarin Cream mixed work pretty well...I've also started using ice packs...I take rubbersurgical gloves and fill them with crushed ice...wrap them in a fairly thin washcloth anduse that as a pad...feels really nice...I'm also going to make an appointment with thisdermatologist that my dad really likes...she seems to think she can treat this...one otherthing...my daughter is almost three years old...from about a week before she was bornthrough the 14 months that I nursed her, this was absolutely gone...as soon as I quitnursing her, it's started back...and it's not just a vaginal problem...it goes past theperineum to the rectum...I can just barely wipe and I break the skin...a couple of otherthings that I've noticed in your postings are the mentions of birth control pills andstrep infections...I did take birth control pills around the time of the treatment for theabnormal pap but I can't remember what kind they were and when my oldest was born (in1990) he was diagnosed with beta-strep...I was never treated for it or tested forit...when I was pregnant with my daughter in 1997, I was tested for it but it wasnegative...also everything seems the best (no pain) the week after my period when I'movulating and have a discharge...as soon as that is over, I dry up and everything startshurting again. You have no idea how good this feels to be able to tell someone what I've been goingthrough and have them understand! Thanks for hearing me out and some of the suggestions that I've read. Good luck to youall. Angie
CommentI WENT T O THERAPY FOR MY VULVADYNIA AND IT WORKED WONDERS. I WAS PAIN FREE FOR 7MONTHS. UNFORTUNATELY I CANNOT GO BACK AS MY INSURANCE CARRIER(BLUE CROSS/BLUE SHIELD SENTME A LETTER THAT THEY REVIEWED MY CASE AND CAME TO THE DECISON THA I NO LONGER NEEDEDTHERAPY. I COULD SURE USE IT NOW! CURRENTLY I HAVE BEEN SITTING IN A SITZ BATH WITHDOMBORO SOLUTION AT LEAST TWICE A DAY AND USING LIDOCAINE 2%. IT HELPS FOR ABOUT 1/2 HOURTHEN THE PAIN BURNING BEGINS AGAIN. I CAN ONLY DESCRIBE IT AS A BLOW TORCH BEING HELD ONMY OUTSIDE VAGINAL AREA. WOULD ALUM BE ANY HELP AS I KNOW THIS IS USED FOR MOUTH ULCERSAND IT HELPS TO SHRINK THE TISSUE. ALSO I HEARD SEA SALT IS HELPFULL. I AM CURRENTLY GOINGTO DR. AHROLD WEISENFELD FROM MCGEE WOMANS HOSPITAL IN PITTSBURGH. HE DIAGNOSED ME AND HADME ON ELAVIL FOR A FEW YEARS WHICH DID NOTHING BUT MAKE ME GAIN WEIGHT, THEN HE SUGGESTEDTHERAPY(WHICH WAS A GOD SEND) AND THAT HELPED. BUT IT'S BEGINNING TO REOCCUR NOW AND ICOULD USE SOME ADVICE TILL I CAN GET BACK TO SEE MY DR. IT IS VERY HARD TO GET AN APPT.WITH HIM IN AN EMERGENCY. THANK YOU, SINCERELY, KELLY BELL
CommentAngie I had a LEEP spring of 99, which resulted in nerve pain and eventually thisvulvodynia. I wish I would have known that then that there are things you could try foryour abnormal pap. Go to this site for info:
CommentFor LS -- Dr. Willems at the Scripps clinic in La Jolla has a vulvodynia specialty andclaims a good success rate in treating it.
CommentHi all, Does anyone know of a good doctor in the Phoenix, AZ area that has successfully treatedVV? Are there any support groups in this area? Thanks!
CommentRebecca, You have one of the best GYNs treating vvd in Phoenix. Women travel from allover the country to see him. In fact, I have been considering flying from Washington stateto see him. It is Dr Gordon Davis. I have only heard good things about him.
CommentCC, thanks so much for that website...I'm still really confused about HPV...accordingto that website, if that's what I had, then my pap smears should still be abnormal, andthey've all been normal except for that one...anyhow, the website was a big help...stillgotta check it out more.
CommentHi everyone! Ive been having symptoms of vulvodynia for about 3 to 4 months now. Ivebeen doing alot of research on my own. Ive been suffering with pelvic pain andendometriosis for 11 yrs and have had 10 laparoscopies! I thought my pelvic pain was bad!now i have this terrible clitoral pain, pain in the walls of the vagina, burning---- justput the final nail in the coffin of my sex life. Im 31-- single and im devastated at thethought of never being able to have a relationship with a man-- but not only that-- i cantconcentrate-- i cant work- i cant excersise--- i feel suicidal most of the time. Ive beenreading about the nerves that supply the genitals-- in particular the pudendal nerve--this nerve supplies sensation to the vagina, clitoris, rectum, and the skin-- so alot ofour symptoms center around this( i have rectal pain and irritation there too). There is nosign of irritation on my skin. I am guessing this is a nerve problem-- the nerve ishyperactive and irritated by alot of different things. Could be that the muscles in thepelvis are in a spasm and are compressing the nerve, or a cream of some kind caused thenerves to turn on and not shut off-- or maybe in my case-damaged from previous surgery--orconstant yeast infections turned the sensitibity of the nerve up and then everything wenthaywire? Im just guessing here-- im figuring a pinched nerve in the spine can lead to thepudendal nerve to feel pain( itching is a form of pain u know-- neurologically). So imwondering-- why are we being givin all these topical useless creams that irritate usmore-- why cant we get an anesthetic injection into the nerve to stop the process. Orchiropractor to release the nerve-- or physical therapy of the pelvic floor muscle torelease the spasm thats irritating the nerve. The nerve is turned on and it has to beturned off so the signals can normalize--- how though? Ok this is what im going to try---first -- if this is a chronic candida problem i will go on a anticandida diet and takenatural herbs and supplements to kill it off-- second i will go to a pain center where ananesthesiologist?neurologist whatever will deal w the nerve itself-- injecting it etc. Icould try acupuncture for the same reason too. Then also a physical therapist andbiofeedback to get the muscles going and maybe a chiropractor. Well these are just myguesses-- im going to start trying them. I wish you all alot of success and my heart goesout to all of you. Oh by the way-- some single girls asked about dating-- i was wondering-i know some guys of all ages have problems with their penises and cant have sex-- i knowone right now who is 24! cant we set up a dating service for girls w vulvodynia and menwith this other problem? They are suffering the same also-- we all need love--even if itdoesnt entail sex. Im from New York and found a specialist in connecticut that deals withvulvodynia and uses both natural and traditional therapies if anyone is interested.
CommentDeb, Regarding your message of 11/20, I noticed a definite change in my cycles when myvulvodynia started. I now have spotting on about 80% of the days between my periods! It isonly a very light spotting, but it is still there, and often it is irritating and causesme to swell. I am seeking treatment to stop this. I wonder if some women's vulvodynia is caused by hormonal changes in the body. I knowmy hormones are off, and so many people write in saying that they think there is aconnection between birth control pills (which is nothing but synthetic female hormones)and the onset of their symptoms.
CommentHi I just wrote before but i was just thinking about something-- I was reading thatyeast causes an inflammatory response because it releases histamines(like an allergy)-- sohas any one tried antihistimine-- like benadryl either orally or in a cream form as wellas going on a long term anti candida diet with maybe some antifungal oral meds-- i thinkthe creams being supplied by doctors are causing more problems-- i would stay away fromthem. Just a thought-- thanks-- email me if you want to talk.Im thinking maybe the yeastbecame resistant to all the meds and maybe changed form or something-- it may take monthsof diet and maybe some natural herbal antifungals to get it in control in the system andthen maybe taking an antihistimine.
CommentHi I just wrote before but i was just thinking about something-- I was reading thatyeast causes an inflammatory response because it releases histamines(like an allergy)-- sohas any one tried antihistimine-- like benadryl either orally or in a cream form as wellas going on a long term anti candida diet with maybe some antifungal oral meds-- i thinkthe creams being supplied by doctors are causing more problems-- i would stay away fromthem. Just a thought-- thanks-- email me if you want to talk.Im thinking maybe the yeastbecame resistant to all the meds and maybe changed form or something-- it may take monthsof diet and maybe some natural herbal antifungals to get it in control in the system andthen maybe taking an antihistimine.
Commenthttp://www.4healthysolutions.com/
CommentI had a rough sunday yesturday. Financial problems getting to me, my husband has towork to many long hours for the holiday season so I miss him, and of course my problemwith vvs. I got very depressed all of a sudden yesterday and just broke down. Thoughts ofending my life entered my head though I would never do that. My husband came home fromwork but then he had to go back or he was going to lose his job. I went to my parentsbecause I didn't want to be alone. I feel better now. My husband told me he loves me somuch and to never leave him because he can't live without me. He told me I was notinadiquate as a woman. We were able to make love last night almost pain free for the firsttime in two weeks with the help of numbing stuff. I cried. It's so nice to have asupportive family and a husband who loves me and wants to be with me no matter what.Thanks for hearing me out ladies. Have a good day!
CommentHi everybody, Has anybody tried a pill call DOXEPIN?? It is pretty good and in two days I have felt alot better!! the only problem has been that I got an allergic reaction in my face. (myface is red and itchy) has anybody tried this pill and experienced this side effect? Anyway, hang on in there and Tamara I am sure someone will find a cure for this ilnessand I am glad you have a nice husband to support you!!
CommentMary, please be careful with the new medication if it's causing you an allergicreaction. It could be serious!!
CommentMary, I second the last opinion. A red itchy face IS an allergic reaction. Your firstreaction can be minimal such as this, additional allergic reactions could be lifethreatening. Call your dr./pharmacist right away!
CommentHI, Thanks for your opinion. (you did not put your name) I have called my doctor and stopedtaking it and I am waiting for further instructions. I am still not sure if this has beencaused by the pill since it is only in my face. We will see, anyway, if some actually tookit, I would like to know how it worked. Thanks!!
CommentI HAVE HAD VULVODYNIA FOR 1 YEAR AND I HAVE BEEN TESTED FOR A YEAST INFECTION WHICH MYDOCTOR SAYS I DID NOT HAVE. I DID TEST POSITIVE FOR A HPV INFECTION AND I DON'T KNOW IFTHIS COULD BE THE CAUSES OF MY BURNING. I AM TIRED OF TRYING TO DIAGNOSE MYSELF THROUGHTHE INTERNET AND FIND MY OWN REMEDIES FOR THE IRRITATION. I AM ALSO GLAD I AM NOT THE ONLYONE SUFFERING. I JUST FEEL LIKE A NEED SOME TYPR OF MEDICAL CONFORMATION TELLING BE THISIS NOT LINKED TO SOME STD. I AM PROBABLY STRESSING MYSELF OUT WONDERING ABOUT IT ALL THETIME. WELL I GUESS I HAVE SAID ENOUGH. THANKS FOR LISTENING.
CommentI HAVE HAD VULVODYNIA FOR 1 YEAR AND I HAVE BEEN TESTED FOR A YEAST INFECTION WHICH MYDOCTOR SAYS I DID NOT HAVE. I DID TEST POSITIVE FOR A HPV INFECTION AND I DON'T KNOW IFTHIS COULD BE THE CAUSE OF MY BURNING. I AM TIRED OF TRYING TO DIAGNOSE MYSELF THROUGH THEINTERNET AND FIND MY OWN REMEDIES FOR THE IRRITATION. I AM ALSO GLAD I AM NOT THE ONLY ONESUFFERING. I JUST FEEL LIKE A NEED SOME TYPE OF MEDICAL CONFORMATION TELLING BE THIS ISNOT LINKED TO SOME STD. I AM PROBABLY STRESSING MYSELF OUT WONDERING ABOUT IT ALL THETIME. WELL I GUESS I HAVE SAID ENOUGH. THANKS FOR LISTENING.
CommentHi. I've been diagnosed with vulvodynia for several years now. Recently, however, I'vestarted experiencing "tingling" sensations in my arms, legs, and face, which,according to my research on the internet, could be a symptom of fibromyalgia. Also, justfeel sort of "achey and tired." I've also heard that vulvodynia and fibromyalgiacan kind of go together. Don't know if this is true or not. Anybody else experiencing this? I'd appreciate hearing from anyone who has experienced this, as this is adding moreworry to my life. Thanks.
CommentDoes anyone have a recommendation for a naturopathic doctor in Charlotte, NC?
CommentHi! This is my second time writing here. I'm so thankful for a place like this. Knowingthat I'm not alone in this awful condition is comforting in itself. Tamara, I'm so sorrythat you had such an awful day(all though it sounded like the night turned outGOOD!). Ifind myself feeling very depressed at times. Lately the itchy,burning,rawness hasn't beentoo bad - but this feeling of an irritated bladder is really starting to get to me. I'mhoping that it will subside soon. Does anyone know what to do for this? Someone mentioneda low oxilyate(sp) diet, and calcium? Can anyone give me any info on that? Where do I findthis diet? Mya - I read your last two comments - I think that what you are saying reallymakes sense. I'm going to check into some of what you said myself and research for somesolutions. I think for the most part, natural is better, and I will try this approachfirst. Hope for all of you a good evening.
CommentDebra, Try Uristat. You can buy these pills over the counter and you wont feel that bad whenyou urinate. They are dark red. It is for temporary relief
CommentThis is to Dr. Glazer, do you know of a Dr. in Springfield Missouri that treatsVulvodynia? I also have fibromyalgia. I have burning and raw places, also pain from myunderwear touching me, I thought it was maybe the hair getting pulled in elastic of mypanties but soon realized I have Vulvodynia, but I will not go to a Dr. unless I can findone that treats this and knows about it, because I have already had Dr's who think I amcrazy because I have fibromyalgia ( they don't believe in it ), I don't think I could takeanother rejection from a Dr. for Vulvodynia. I also had endometriosis and a totalhystorectomy. I have allergies and Chronic diahrea. I take a lot of medications thatsometimes help and sometimes don't. My pain form the fibro is chronic and I have thoughtof suicide before. It hurts to walk and sit. I also have problems standing because of thefibro so its darned if do and darned if I don't. I have been on MS contin for fibro painwhich helps cut the pain of the fibro but not the Vulvoddynia. I also take prozac andxanex for fibro. I take ambien a night to sleep and High blood pressure medicene. I takeestrace and allergy drops. I also take prilosec because I have bad acid reflux andsometimes trouble swallowing. I also worked in methyl ethyl ketone for many years with myhands in the stuff every day and I am convinced that this has contributed to all myproblems. I've been in two bad car wrecks and I think that this could have caused part ofmy fibro problems. I am also a survivor of sexual abuse. I think this has contributed tothe fibro and chronic pain. I have had my gall bladder and appendics removed. Thefibromyalgia had fused my rectum my bladder and my appendics together. I haave panicattacks and depression also, but I guess you can see why. anyway thats my story and Iwould be very grateful if I could find a Dr. or you could help me find a Dr. inSpringfield Missouri who reats Vulvodynia. Thank You Dr. Glazer so much for this wonderfulplace you have created where we can come and talk to others that have the same pain, Itmakes us feel like were not so all alone. By the way I've also tried all the natural stuffand herbs and vitamins and diet changes to try alleviate some of these things and it hasnot helped. I am presently going through physical therepy for Bursitis that I've had forover a year in my shoulder. I also do daily stretching exercises and have takenfibromyalgia self help classes and pain injections and water therepy along with trying tokeep moving so I don't get so stiff that I can't hardly walk. Thank You May
CommentMay, I tried to email you but it wouldn't go through. Is your email addressed postedcorrectly? Sue
CommentTo Rebecca- Thanks for the Estrace information on 11/17. I started using it a week agoand I haven't had as much pain urinating the last 5-6 days. I am hopeful that it will helpwith the redness and swelling. Have you taken it consistently for 6 months? I had taken Elavil (25mg) for a month and that didn't help with anything so I am notgoing to continue it. To Amy- I also want to tell you to go to Graduate Hospital in Philly. I just went toNurse Practioner Susan Spadt last week and she was terrific. She works under urologist,Kristene Whitmore. It is worth the drive for you. To C- Thanks for suggesting I go see Susan Spadt. I saw her last week when I was inPhilly. She is very helpful and full of information. Lisa
CommentJust wanted to know if any of you went to the NY Center for Vulvodynia and was Dr.Glazer of any help? Adelle
CommentAMY: Thanks for responding to my 11/20 post regarding the change in periods. I'mgetting to the point now where I have so many different symptoms, it's hard to know whichare vulvodynia related and which aren't! I know what you mean about hormones and the pill. I wondered about that as well, andhave just gone off of my birth control pills to see if it helps me. Probably a good ideato give my body a break from them anyways!
CommentLisaM, yes I have used Estrace for exactly 6 mo. I use an inch in the a.m and p.m. Myevening dose I mix with a 1/2 inch of a steroid crm (which is to help my lichensclerosis). My tissue is almost completely back to normal. I also take Paxil in themorning. The dr. I go to has you take this to help block the nerve pain. I think it hashelp with some of the daily aching I have had. Unfortunately my glands are not respondingto any treatment. They are continuously swollen. I am having surgery at the end ofDecember to get them removed. The dr. I see has done many successful surgeries for this,so I'm praying this is it. They have been like this for 4 yrs.(probably due to my skindisease that has been misdiagnosed for 3 1/2 yrs). Hopefully this will help you out.
CommentLisaM, yes I have used Estrace for exactly 6 mo. I use an inch in the a.m and p.m. Myevening dose I mix with a 1/2 inch of a steroid crm (which is to help my lichensclerosis). My tissue is almost completely back to normal. I also take Paxil in themorning. The dr. I go to has you take this to help block the nerve pain. I think it hashelp with some of the daily aching I have had. Unfortunately my glands are not respondingto any treatment. They are continuously swollen. I am having surgery at the end ofDecember to get them removed. The dr. I see has done many successful surgeries for this,so I'm praying this is it. They have been like this for 4 yrs.(probably due to my skindisease that has been misdiagnosed for 3 1/2 yrs). Hopefully this will help you out.
CommentDEBRA: I, too, have problems with my bladder. (The pain flares up and down, sometimes feelingrather "normal" and other times feeling as though I have a bladder infection.) Here's where you can find the low oxalate diet: http://www.branwen.com/rowan/oxalate.htm As far as the calcium, the brand I tried first was "Citracal" - guess ithelps some people, but it didn't seem to help me. The brand I've seemed to have more luckwith is "Calcimate Plus" by PharmAssure. I got it at a GNC store. (That one has"extras" in it (like vitamin D, etc.); I think they also make one just called"Calcimate" if you don't want any other vitamins included.
CommentTo Diana, Thanks for the recommendation, but I've actually been to see Dr. Gordon Davis inPhoenix. I was not impressed with him, unfortunately. He took one look at my vulva, wavedaside tests done by another GYN that indicated lichen sclerosus, and proclaimed that I hadVV, without having performed any tests. He then gave me some anti-fungal medication and anestrogen cream, none of which had an effect. He said then that surgery was the onlyoption. I didn't like that option, and have been reading this website frequently to getinformation on various natural remedies. What kinds of success stories have you heardinvolving him?
CommentSue yes my email is posted correctly because somone else emailed me from the same postand they got through. Try again. thanks May
CommentMay, I've tried to email you several times and it just won't work. If you'd like totalk, you can email me first and then I can reply back to you. Hope you're feeling bettertoday. Sue
CommentRebecca: I too was diagosed a long time ago with Lichen Sclerosus and then later toldby a specialist that I didn't have Lichen Sclerous at all, but Vulvodynia. A biopsy hadconfirmed Lichen Sclerous and the Q-tip test was used to diagnose the Vulvodynia. Thespecialist questioned my biopsy results. The Estrace cream was working very well for meuntil recently when I had a terrible flare-up for a month. I was in such agony andcouldn't see myself living with this disease for the rest of my life. Anyway, I hope youfind some relief soon. Sue
CommentTo all- I have just started taking Urocit tablets (prescription). It is potassium andcitrate. I find it more helpful than the Citracal in fighting painful urination. Rebecca- Good luck with your surgery in December. Thanks again for the Estrace info. Iguess what makes this so confusing is that what works for some people, doesn't work forothers. I am really hoping that the Estrace will help. Lisa
CommentSue, I just wanted to ask did you use a steroid crm. called Temovate along with theestrace? I was just wondering because the steroid is actually what helps the lichensclerosis.
CommentRebecca, when diagnosed with Lichen Sclerosis I was prescribed a Testosterone creamwhich worked pretty well. Now that I supposedly just have Vulvodynia, I only use Estracecream. I'm also menopausal which doesn't help matters either. Good luck. Sue
Comment1. it has something to do with antibiotics.2. get tested for HPV-human papilloma virus3. test for Chlamydia. 4. stop all creams or yeast treatments. let heal- elavil works-also in low dosing it is harmless 10-25 mg. give at least 2-4 mos to work. time will heal.
CommentTamara: What cream did you use to numb the area for intercourse? My doctor told me tofind a cream with lidocaine in it but I am having a problem finding one? Any suggestionswould help. Thanks for posting your info here. Every bit helps!
CommentI too have vulvodynia and have had it for over 20yrs...but was just diagnosised with itapprox 1yr ago. I thought I had a sensitivity to yeast when in fact it wasvulvodynia....I'm happy to say that I take 100mg of Eval a day as well as calciumcitrate.. I am pain free although it has caused me to gain some weight. The only advicethat I can give is don't give up trying ...I didn't and I'm living a fairly normal life
CommentSally - could you tell me what "Eval" is? I'm assuming it is a prescriptionfrom your dr., but what drug family is it from, or is it natural? Thanks!
CommentHello to all of you ladies. All this time I was sure that I was the only person alivethat was experiencing such horrible discomfort. I actually have started crying readingthrough several of your experiences. I think I have vulvadynia; at least that's what I'vebeen told. However, it seems most of you are just complaining about burning sensations. I,too, burn, but I also have other feelings; mainly tingling and tickling sensations. When Isay "tickling" I don't mean "itchy", it's just a feeling likesomething is there that shouldn't be. My problems started in January of 1997. I hadstarted taking birth control pills 2 months earlier. I really blame my problem on that.Most of my friends were on the pill and experiencing no problems at all. My boyfriend of 4years and I always used condoms and then I guess I wanted to seem like I was"cool" and asked my obgyn for a prescription. The first month I seemed fine andthen the next month I noticed I was hurting during sex and was really sore and puffyafterwards. I figured I had to get used to the hormone. About 4 months later I decided toget off of it and made another dr. appointment. He told me I had the worst yeast infectionand bacterial vaginosis infection he had ever seen. He gave me 2 Vagistat creams and aprescription for an antiobiotic to be taken intravaginally. Everything seemed great for 2weeks, then BOOM, I started hurting again. I thought it was probably yeast since it can behard to get rid of. After a week when it didn't help, I went back to the dr. He took aculture but said that I had bacterial infection again. He wanted me to wait for the labresult to figure out exactly what type we were dealing with. The lab result came back as"Normal vaginal flora". So he wanted me to come back in to get checked outagain. This time I had bacteria and yeast. He gave me an oral antiobiotic and Terazol.This finally cleared me up on the inside, but left me with external discomfort. I stayedaway from the doctor for about 6 months but was getting depressed because of the constantdiscomfort. I was really worried because I was getting married in less than 6 months andwanted to be cured. Well, he ran a test for STD's which all came back negative. The hegave me a steriod cream to use for a month, when that didn't work he tried another. Thenhe did a biopsy and all it told him was that I had severe skin inflammation. He gave up onme and sent me to some hot shot professor who said it was all in my head. The A-holedidn't even bother to examine me. So, back to my doctor who recommended a cancerspecialist, which really freaked me out. This guy said he thought I had HPV and did acolposcopy on me. My entire vulva turned white and he took a biopsy. The result was thesame as the first one. He then still believed I had HPV so he gave me this Aldara cream touse 3 nights a week for 12 weeks. It turned me so raw, and did not help in the least. Sonow he decided I needed surgery to remove a portion of my hymenal ring which is where allmy pain is centered at. I can honestly say that the surgery took away some of my symptomsand made the rest a little less disturbing. Unfortunately, I still am in a lot ofdiscomfort. He told me maybe I needed to see a physical therapist. I scoffed at that idea,and decided to visit a dermatologist. She was great but didn't cover my insurance plan onemonth after I went to her. She had suggested that I was having an allergy to yeast and putme on Diflucan every day. It seemed to make me feel so much worse. Since I couldn't go toher anymore, she gave me the name of an obgyn who she said worked with biofeedback. Thisdoctor told me I don't need biofeedback because that only helps those who actually havemuscle spasms. He gave me Estarce cream to use every night. It seemed to start helpingafter about a month, but then a month later, it didn't. Then he prescribed Elavil for meto take and said to give it 3 weeks to take affect. This didn't help me at all. Well, 8weeks ago, I had surgery AGAIN to remove a little bit more of my hymenal ring. This isgetting to be ridiculous. I am still hurting just as much as I was before the secondsurgery. He believes the problem lies with my nerves. If that's the case, I think theElavil should have worked. Also, why did all my biopsies show "severeinflammation?" If my problem is the nerves, I shouldn't show any physical problemswith my skin. Also, don't your nerves "fire" periodically. I mean I am inconstant discomfort ALL DAY EVERY DAY. I am so sorry I wrote so much. I just hope someoneout there also experiences constant discomfort so I don't feel so alone. (Not that I wantanyone to feel bad) I try to tell myself to keep my chin up, and I want all of you to dothe same thing. Someone out there is going to find a cure for this problem sooner orlater. We just have to keep positive and have happy thoughts. God bless.
CommentWondering if any have suspected the bleaching of our pads and tampex as a source ofthis nasty dis-ease? I didn't notice the itching and pain until after the months of heavybleeding from fibroids, requiring months of pads and tampons. Bleaching is used for ourkids diapers and our toilet paper and "sanitary napkins." Do women in otherparts of the world suffer too? What does it do to us women? They say bleach cause dioxinsin the waters near pulp mills...this kills fish. What does it do to humans when in suchclose contact for so much time. Thank you for this sounding board. I too thought i was alone!!
CommentI was wondering if anyone can offer me an answer. My dermatologist suggested that maybethe cause of my external discomfort was the fact that I had a hypersensitivity to yeast. Ihad a yeast infection and my female doctor told me I had 4 types of yeast so I couldn'tuse any over the counter meds. He gave me a prescrption for Terzol( don't know if Ispelled it right) Apparently the infection went away, but I never quite felt right. Thedermatologist put me on Diflucan for a few weeks everyday. it didn't help. I've seen TVcommercials for Diflucan and it states that it is used to treat Candida. Does this mean itshould help all yeast infections or hypersensitivities , or is there other types of yeastinfections out there that are resistant to Diflucan? The dermatologist never tested me foryeast hypersensitivity; she just thought that's what it was. Any suggestions? Thanks
CommentI have some questions about Elavil/amytriptiline, so I'd appreciate input from anyonewho has used this drug. 1) how long did you take it before you got relief? 2) what dosagewas the most effective? I started taking amytriptiline about a month ago, 10 mg at first and I just bumped upto 20. I have felt some relief, primarily mental, but a little physical too. But there'sstill a LOT of room for improvement. I was just curious about other women's experienceswith this drug. . .from what I've read so far it seems that I'm taking a very low dose. Thanks ladies, I hope you have pain-free days, Ruth
Commenthello, do you know if there are any side effects when combining birth control andantidepressants? any information that you have would be greatly appreciated... withgratitude..... andrea
CommentHi everyone!! I know that it's been quite some time since I've posted on the board and I'm trulysorry for that but I've been quite sick for some time as well as spending time being acaregiver to my 91 year old grandma who passed away back in Sept. In addition to the vulvodynia I have the following conditions: endometriosis,Polycystic Ovarian Syndrome, osteoarthritis in my left knee (had that since I was about16), Irritable Bowel Syndrome. My question to all of you is this. Is there anyone on the board that has theendometriosis and the Polycystic Ovarian Syndrome at the same time as vulvodynia? If so Iwould love to be able to e-mail with you to get some additional support for what it's liketo live with all 3 of these conditions at one time. Some days I feel like a freak eventhough I'm not and that these are just the conditions that I have. Also for anyone who would like to have an e-mail pen pal off the board please know thatI'm available at any time. Take care everyone and I will try to write again soon. http://www.geocities.com/HotSprings/Falls/4659/kristyspage.html
CommentLori, I sympathize with you. It is very frustrating to have this problem. Especially, when weall know that if men had this disease there would have been a cure by now. I have had vulvodynia for 12 years now, it started 3 years into my marriage. I am stillmarried to the same man, but our relationship has never been the same. I have pain almostevery day as well. It doesn't last all day long thankfully. I have to be careful to drinkat least 8 glasses of water everyday. I also use a prescription of xylocaine ointment(5%),you can get it from any kind of doctor. It numbs the skin, so most of the pain is gone fora while. At times, the xylocaine doesn't completely help, but it is better than nothing. I am on an anti-depressant, currently prozac. I was on paxil for a long time, but aftera while it stopped working or I got more depressed (I am not sure). I have been through biopsies and laser surgeries as well and nothing has helped me. Iwent to countless doctors that told me that it was all in my head, just find anotherdoctor. Eventually you will find one that will try to help you. I am trying to get myinsurance to cover biofeedback, because that is my last hope. Just post where you live and ask if anyone knows of a specialist in your area. Good Luck.
CommentTo all- Has anyone had any success from taking a low dosage of Neurontin? It is supposed tohelp with reducing the pain because it is supposed to help the central nervous systemblock the pain. Please let me know! Thanks, LisaM
CommentHi Julie, Terazole and Difluxcan are not the only alternatives to treat Candida. Not all theYeast infections are the same, I had rare candida for quite a while and it took a longtime to get rid of it (apparently I did but the symptoms are still there). So there arequite a few people that has sent messages that had rare candida. So talk to your doctorabout other treatments. Good luck, Mary
CommentTo LisaM I took Neurontin for a while and got no relief from it. But I have tried otherthings that haven't worked for me, but have helped others. If I were you and a doctor isrecommending it, I would try it. You have nothing to lose by trying it. Something thatworks for me, might not work for you and vice versa. Hope this helps.
CommentTo Ruth I took Elavil for about 1year now. Very low dose, 20mg.at night 10mg inmorning. It takes about 4 ot 8 weeks to notice an improvement. I also take Calcium Citrateonce a day. It seems to have helped me a great deal. The only draw back from the Elavil isweight gain. I have gained about 30lbs. since taking the Elavil. I am going to try to stoptaking it but if the pain gets too bad again I guess i will have to be happy with theweight.
CommentTo all: Regarding the PharmAssure Calcium (from the GNC store): I wrote earlier about thecalcium I seem to be having good luck with: Calcimate Plus by PharmAssure (which hascalcium citrate malate with Vitamin D, Magnesium, Zinc, Copper and Boron).) There is also a version called "Calcimate" by PharmAssure (contains thecalcium citrate malate with Vitamin D only).
CommentMarilyn...I hope you get the chance to try biofeedback...it worked well for me. I havetried everything out there and nothing worked. I was opposed to surgery, my doctor hadtold me that most of the time the pain returns worse than before. So like you biofeedbackwas my last option at the time. Just hang in there, if you get the chance to trybiofeedback stay with it, it takes some time to start feeling relief but it is definatelyworth the wait. Good luck to you...Shannon
CommentMarilyn...I hope you get the chance to try biofeedback...it worked well for me. I havetried everything out there and nothing worked. I was opposed to surgery, my doctor hadtold me that most of the time the pain returns worse than before. So like you biofeedbackwas my last option at the time. Just hang in there, if you get the chance to trybiofeedback stay with it, it takes some time to start feeling relief but it is definatelyworth the wait. Good luck to you...Shannon
CommentShannon--or anyone else who has had biofeedback--I am looking into biofeedback as atreatment option but was wondering if you could tell me what your history and symptomsare/were so I can see if that sounds similar to what I am going through and mighttherefore work for me! Thanks so much for your help! Shannon
CommentWell, I just got back from my second Gyne. appointment, and am feeling very frustratedby the lack of answers she was able to provide, as she seemed more occupied in getting meout of her office so she could leave for her trip that afternoon. That combined with thefact she admitted she was "guessing" I had a problem with yeast, and she statedDiflucan is "the only" medication for yeast ( regardless of what I've read onthe Internet that Nystatin is remarkably safe and effective), has convinced me I must finda new specialist and FAST! Please ladies, I'm really desperate to get this properlydiagnosed. I do not want to take Diflucan if I have atypical yeast, as it's only effectivefor Candida. I realize the majority of yeast infections are caused by Candida, but I havenever experienced a yeast infection before in my life, and every time I have takenantibiotics I have been O.K. (that is, before the course of Keflex back in May--that's whyI'm thinking I may have a problem with one of the "other" yeasts. Has ANYONEseen a good doctor in Southern California, preferably in the Orange County area. I need aspecialist to take samples of my discharge and look at it under a microscope right therein the office, not send a pap out for a culture and keep his/her fingers crossed. I hateto vent but this is ridiculous. I felt like I couldn't ask my Gyne. about any of thesetechniques because she didn't seem interested at all, she just examined me and"guessed" it was yeast. I need to know if it is and the sooner the better! Ifany of you out there can help me locate a specialist I would be most appreciative! Sandee
CommentI have an appointment with Dr. Kenneth Crabb, who I found listed on this website, in amonth. Has anyone else been treated by him? What was your experIence? Also (in case thisdoesn't work out. . . I'm sure everyone knows how that goes) does anyone know ofgynecologists in the Chicago-central Illinois-or MInnesota Twin Cities area who have beensuccessful in treating vulvodynia? Thanks ladies, your input is greatly appreciated!! Ruth
CommentI have been reading all of the posts and I am amazed at the number of other people outthere who are just like me. I was sexually abused as a child, and was diagnosed withvaginisimus at 18. Although the vaginisimus has gotten better over time, the painassociated with intercourse never got better. After a few years of marriage, at the age of23 I decided to do something about it. After a year of therapy with a psychologist andanother year with a sex therapist, my sex therapist recommended seeing a specialist at thelocal University hospital. Immeadiately he had a diagnosis for me, vulvar vestibulitis. Itried the steriod creams for a while with no success, so in June of this year I underwentsurgery. Not only has the pain on insertion virtually disappeared, I have not had a single"yeast infection" since the surgery. Prior to the surgery I would get yeastinfection symptoms each time I had intercourse. I still have some pain with deeppenetration, but overall the surgery was a success. It was an outpatient procedure lastingabout 30 to 45 minutes, and the recovery time was actually very fast. Within about fourweeks I attempted sexual intercourse on my own and noticed a big difference. Althoughsurgery is not for everyone, I wouldn't rule it out. The only thing that has not changedsince the surgery is my lack of desire. Due to all of the painful sexual experiences in mypast, I have never enjoyed sex, and as a result never desired it. My physician has givenme a prescription for a ky jelly like substance that contains testosterone. I have notbegun using it, but I would be interested to hear how everyone else is dealing with theirlack of desire (if they are experiencing it too). As I work full time and go to schoolfull time, some of it may be due to pure exhaustion, but not all of it can be explainedaway. Thanks for all your posts, they give me a lot of encouragement.
Commenttest
CommentI have suffered from extreme pain in my pubic hair area (on the top of my vaginal area,below my belly button) for almost three years now. It appeared out of nowhere when myfirst child was approx. nine months old. It feels like nerve pain. I wear anywhere fromtwo to four pairs of support underwear everyday to keep it comfortable. The underwearworks like an ace bandage I guess. Some days it hurts so bad I catch myself alwaystouching myself down there and people will look at me strangely. Tomorrow I am going to apain clinic for a cortizone (sp?) shot. I hope that helps. Does anyone else suffer frompain in that area that can offer suggestions to me. Should I try a chiropractor? What dochiropractors do? Also, after the birth of my second child and a stage 4 episiotomy, I was unable to haveintercourse, literally could not stand the pain of penetration. This went on for about 8months of going back and forth to my doctor saying "it still hurts". During thistimeperiod, just to give you all details, I was breastfeeding and had started the depoprovera shot. I finally got fed up and went to Boston to see my aunt's ob/gyn. Sheimmediately diagnosed me with VV after doing the Q-tip test. She gave me two options:numbing cream or surgery. I chose the surgery. Miraculously, as the surgery date wasapproaching, the condition disappeared. I had stopped breastfeeding and the depo shot acouple of months prior. My gyno feels that the condition came on as a result of thecombination of breastfeeding and the depo provera (breastfeeding causes dryness and thedepo provera is estrogen free I believe). Anyway, obviously I cancelled the surgery andwas happy to be recovered from almost exactly one year of hell. Well, I thought it wasover. I delivered my third child this past July 19th. No episiotomy this time. We waitedsix weeks till we had intercourse - it was ok but a little sore but to be expected. To behonest, we didn't use birth control at that time out of sheer forgetfulness!!! Shortlyafter I started the micronor birth control pill (estrogen free and safe to take whilebreastfeeding). I finished one pack and started my second. My husband and I hadintercourse (not a frequent event in our house with a 4 year old, two year old and a 4month old - we are so busy and tired!) about two weeks ago and I just simply could notbelieve the absolute sheer pain I was in after intercourse. It was all I could do to justcrawl into bed and lie there while my vagina throbbed endlessly. The next morning I got amirror and did a self-check and my entire vaginal area was as red as a tomato and swollenand still so painful and it hurt to urinate and wipe myself. I was literally devastated. Iimmediately that morning threw away the package of birth control pills. You cannot tell methat it is a coincidence that I am again breastfeeding and taking a form of birth controlthat is estrogen free and this happens again. Anyway, that was about two weeks ago.Obviously, I am not on any birth control right now - I am going to be fitted for adiaphram (any opinions on that???) next week. I told my husband (not that we have sex veryoften anyway due to the kids, etc.) that I will not put myself through that again. I feelok down there as of right now, the rawness has gone away, etc. The nerve pain, which is what I am going for tomorrow for the cortizone shot, I haveevery minute of every day and I am so tired of it. I would love to be able to wear nice,sexy underwear again. Instead, every morning I put on my old lady Hanes support underwear,two to four pairs, before I go downstairs to start my day. Please e-mail me or write back in the guestbook with any comments or thoughts. Also, a couple of questions after spending some time reading the endless entires in thecurrent guestbook: What do most of you take Elavil for? nerve pain ? What is Diflucan? What are some foods that people should stay away from that have high oxylates? pleasegive some examples. I really don't understand the concept of a low oxylate diet. What also in the purpose of calcium citrate? What does it do and how does it help? I actually posted these almost exact questions almost a year ago and I don't thinkanyone respoded at that time. Please respond if you can. Thanks so much. I feel so badly for all of you suffering day to day with pain. It really brings youdown. Sometimes when I am so busy with my children and that pubic hair area is botheringmy terribly or I feel uncomfortable because it's not quite the most comfortable thingwearing numerous pairs of support underwear, I'll just be so depressed. I feel for you andthink this web site is great for everyone to be able to reach out. Thanks
CommentErica, Use your search engine (my favorite is google.com) to research the questions youposted. Try going to vuvodyniasupport.com and/or this site for links for info. You haveasked so many questions, it is unlikely any one will answer all of them. I will answerone, however, diflucan is a prescription antiyeast medication. Normally taken only onetime, it is often prescribed for "us" as a possible answer, sometimes daily orweekly, often long term. Also, Many women claim a hormonal link. There are many causes forthis pain. Hang in there. Ilona
Commentcorrection: http://vulvodyniasupport.com/ This one is about the oxalate therory: http://www.vulvarpainfoundation.org/ Here's another There are alot more out there Ilona
CommentI have been reading your messages and they have been a big help emotionally. I have hadvulvadynia for one year. It began with bacterial vaginosis and ecoli. After takingmetrodizanole (sp?) and flagyl, I had permanent irritation. Mostly burning of the vulvawith some stabbing pain. Plus I get tickly sensations on the mons area. After two obgyns,I found an obgyn that knew about vulvadynia. Dr Fowler, at the Phoenix Mayo Clinic wasvery kind. He put me on diflucan for a few months and a hypoallergenic regimen but thisdid not relieve the pain. He said it could take 6 months for this regimen to work. Thatwas a year ago. Each time I visit, he makes a wet slide in the office to check for yeastbut doesn't find any. I am also going thru menopause. My periods are light and occur everythree weeks. What I've noticed is that there is no pain during my period. This leads me tobelieve it may be a hormonal problem. I tried 10 mg elavil for 5 weeks but stopped becauseI did not like the drowsy feeling. It did relieve the pain but not completely. However, ifI don't find a cure and the pain remains, I think I will return to elavil. I am going tosee another obgyn, Dr Gordon Davis, in one month. I read one entry saying he wasn't muchhelp but I am going to see what he says. I am also seeing a naturopathic doctor. Thenaturopathic doctor's assistant told me she had seen Dr. Davis and her 9 yr pain muchimproved after surgery. I think she had vulvar vestibulitis (pain upon entry). She saysshe still has some pain if she eats/drinks the wrong foods (ie: wine). She gave me twowebsites: www.arizonadoctors.com www.nva.org (she joined this organization and gets theirnewsletter) I'll write again to say what these two doctors recommend. Thanks again foryour letters!
CommentThis message is for Ruth who was wondering about a specialist around the Chicago/TwinCities area. I have found a wonderful vulvar specialist who I have been seeing for about 8mo. Her name is Jessica Thomason, she practices in Milwaukee. The Clinic is called WOMENNOW HEALTH CARE, (414) 961-5496. She has helped me more in the last 8 mo. then any otherdoctor has in last 4 1/2 years I've suffered from this. I've tried many different doctorsin the Twin Cities to no avail. I hope this helps you. You just need to have a Dr. write areferral to go to her. You won't regret it. I drive 5 hrs. to see her from Minnesota. Ifeel like she is my light at the end of the tunnel.
CommentThis is for Erica, who posted questions about elavil and citracal. Elavil (amitryptiline) is a tricyclic antidepressant which, in lower doses, is supposedto help relieve chronic pain. If you want to know more about it, go towww.physiciansdeskreference.com and enter Elavil into the search engine. You have toregister for this service, but it is a good resource. Citracal (i THINK . . someone jump in and correct me if i'm wrong) binds itself tooxalate crystals in the urine and prevents them from causing irritation. hope this helps Ruth
CommentHi all, Has anybody tried Xilocaine cream? It is supposed to relieve the burning but for me isnot working. Has anybody tried it?
CommentHello Ladies! After reading just guestbook 15 I feel very lucky to be a guy! Why am I here? I'm amassage therapist.........now WAIT A MINUTE!!! Let me finish. I recently took on a newclient who happens to be an OB/GYN resident who has had vulvodynia for the past two yearsand wanted to do some research into to find out if I could help. You see, I specialize in two forms of bodywork, Myofascial Release (MFR) andCranioSacral Therapy (CST), which are two wholistic bodywork modalities. I was impressedto see Dr. Glazer's comments in finding that in most cases that he'd seen, muscularabnormalities were found. I'm wondering how many of you can trace back to symptomsbeginning at or shortly after a physical trauma, and by that I mean childbirth (c-sectionor vaginal), motor vehicle accident (MVA), a fall sustained in the pelvic area (no matterhow outwardly severe or minor you might think, and regardless of how long ago), physicalabuse (rape, incest, etc.), or literally anywhere? Also, I would be interested in knowinghow many of you have scoliosis? Obviously I'm approaching this from a soft tissueabnormality or dysfunction. If I may explain a little physiology to you it might turn a light on as far as whereI'm going with this. Surrounding every single cell, nerve, muscle fibril, blood vessel,and bone is what is referred to as FASCIA, which comprises the connective tissue systemand is a continuous 3 dimensional web that goes from head to toe. Have you ever skinned achicken and seen the shiny white, tough covering over the meat? That's fascia, and it hasa tensile strength of ~2000 sq.lbs. When you/we are injured, the brain attempts tominimize further injury by engaging that fascial system to clamp down on EVERYTHING at thepoint of injury. Ever slept wrong or had a whiplash injury and you can't turn your headfor days? The problem arises when that fascial system doesn't release it's grip on nerves,muscles, blood vessels, etc. and areas that weren't originally affected by the injurysuddenly start to experience pain, or your periods become erratic or cease altogether, youbecome constipated, you start to gain weight and no matter what you do you can't lose it,you become incontinent, you develop fibromyalgia, intercourse become painful if notimpossible, or you develop vulvodynia! I know all of you have at least one of those, ifnot more, right? Think of the fascial system as a sweater or a stocking that gets a snag(trauma) in it, and it goes untreated (bodywork). That snag slowly works it's way up thatsweater or up/down that stocking. That's where MFR and CST come into the picture byremoving those fascial restrictions, allowing your body's normal physiological functions(blood flow, nerve innervation, etc.) to return and the condition to disappear. Now I'm not going to tell you that by just having a couple of sessions of MFR or CSTwill cure you. For one, it's against the law, and secondly, no two people are exactly thesame. I'm suggesting a non-invasive alternative for you to explore as an adjunct to whatyou may already be doing (if it's working), but more especially, as an alternative tosurgery. But I would consider myself somewhat of a soft tissue expert. THE most damningcause of dysfunction in women is SCAR TISSUE! Not only episiotomies, c-sections,hysterectomies, gall bladder removal, endometriosis, etc., but ANYTHING that leavesespecially a deep scar and compromises that fascial web. For more information on bothmodalities check out the following websites: www.vll.com/mfr/ and www.upledger.com/therpben.html Being an alternative therapy caregiver, I have also become familiar with otherpossibilities: 1) MSM (methylsulphonylmethane) - in pill or powdered form. See websites:www.worldimage.com/ (some of the best info) and www.dancingwolf-inc.com/ (among the bestprice) 2)Bee Pollen - yep, the little pellets that come right off the bees legs. Has everyvitamin, mineral, enzyme, co-enzyme, and amino acid the body needs. I know people who'vebeen able to stop taking insulin and were no longer diabetic after taking it........withtheir doctor's knowledge of course. This MIGHT address some of the glandular related postsI've read. 3) Oxygen Therapy - See website: www.cat007.com/o2.htm Read the books: Oxygen Therapiesby Ed Cabe, ISBN: 0962052701 and Hydrogen Peroxide by Conrad LeBeau, ISBN: 1887831029 Of utmost importance is to trust your gut instinct, become informed yourself, and nevergive up hope! God Bless you All!
CommentMarilyn -Thank you so much for writing to me. You have been dealing with this for sucha long time!! It's so frustrating, isn't it? I really hope that biofeedback therapy workswonders for you! You'll have to let me know what they do to/for you. That is one thing Idon't understand. My thoughts and prayers are with you. Erica, You posted some questions. I'm no doctor, but I'll try to answer them as best Iknow how! Someone already answered the one about Diflucan. 'And' yes, I think most peopleuse the Elavil for minimizing the pain from the nerves. Apparently it's supposed to numbthe nerve endings so that your brain doesn't perceive the "message" of pain andtherefore it doesn't "exist" so to speak. I had used Elavil for a little over amonth but didn't notice any benefit. I called and spoke to my doctor this Tuesday, and hesaid it was because he had started me out on only 10mg. They usually increase your dose,I'm guessing until they find a milligram that doesn't cause anymore discomfort. As far asthe diet goes, I know that coffee, chocolate, peanut butter and peas are no-no's. I had alist at one time, but that was really the only foods on the list that I ate. I actaullygave up coffee and hot chocolate cold turkey and did not notice any change. Then I starteddrinking them again, and still didn't notice any change. My guess is that when a persongoes to the bathroom, if they have too many oaxylates (sp) in their urine, it can causeintense burning. I imagine at one time or another, all people have too many but if someunderlying factor is present, the situation becomes aggravated. Julie -my doctor told me that there are many types of yeast that are resistant toDiflucan. I have another appointment with him the end of January and he told me he'swilling to do a culture to check for atypical yeast. All women have a certain amount ofyeast, it's like in a range, and when you get too much you get an infection. Once theinfection is gone, you may be on the high end of the "normal" range and thus youfeel irritated because you still have more yeast than you've ever been used to. I have a question -how do you know for sure whether or not your pain is caused bynerves? My doctor still feels that is what I have. Good luck everyone!!
CommentHello everyone! It's been a year and 1/2 since I was diagnosed with vulvodynia. I haverecently moved to the Boston, MA area and was wondering if anyone could recommend a gooddoctor in the area? Any leads would be GREATLY appreciated!!!
Commenthttp://pub33.ezboard.com/bnewbeginnings1910 Please visit our on-line support forum for advice and support ;)
CommentGyno. thinks I have lichen sclerosis. Diagnosed with vestibulitius for 3 years now. Shelooked in my mouth and noticed I had long ulcers, which I have been getting for about 4years now. I don't even notice them anymore. She said it was lichen sclerosis. I am goingto go see my dermatologist to confirm. I'd love to hear from lichen ladies this is new tome. I am about to begin estrace cream. thanks
CommentMary, I use Xilocaine cream, and love it! Maybe you don't have a strong enoughprescription? I'm on the 5%, it stings at first, but then goes away and intercourse has nopain whatsoever. Hope this helps and take care! Melissa
CommentI have had symptoms of vestibultis since i was 15. 3 weeks after i became sexuallyactive. I heard that this disease happen with mostly caucasian women. I am asian. At thesame time i was feeling this pain, i was tested and had a bladder infection at the sametime. An infection that wouldn't go away for years. I kept getting recurrent UTI. Andthought that that was probably causing my pain down there. I am diagnosed withvestibulitis. I am only 18 yrs old and know that I had this since I was 15. I'm stillseeking treatment. If there is anyone young as me who suffer this, please feel free todrop me a message.
CommentI have had symptoms of vestibultis since i was 15. 3 weeks after i became sexuallyactive. I heard that this disease happen with mostly caucasian women. I am asian. At thesame time i was feeling this pain, i was tested and had a bladder infection at the sametime. An infection that wouldn't go away for years. I kept getting recurrent UTI. Andthought that that was probably causing my pain down there. I am diagnosed withvestibulitis. I am only 18 yrs old and know that I had this since I was 15. I'm stillseeking treatment. If there is anyone young as me who suffer this, please feel free todrop me a message.
CommentTHIS MESSAGE IS FOR CHUCK: Thank you for taking the time to write in our guestbook. What you have to say is veryinteresting. I am interested in learning more about the bee pollen. What did you mean thatit might address some of the glandular related posts you had read? Just curious aboutthis. I have become very interested in learning more about "holistic medicine." Ihave come to understand how so many "seemingly unrelated" pains in the body canbe tied together. I would be interested in knowing if you figure out a way to help vulvodynia suffererswith massage therapy. Thank you. Deborah
CommentI just saw a very good Dr. I wanted to share some new ideas with you. First, a littlebit of prehistory. I have had vestibulitis for 1.5 years. Most of the treatments failed.Elavil helped only in the first month, and then I was back to having flareups. I have beengradually getting better, but it just would not leave me alone completely. So far the bestthing has been time and the occasional use of tampons, at times when secretions areincreased (ovulation, menstruation.) This Dr. I saw has treated many patients. She foundthat in the case of Vestibulitis, Elavil does not work very well. She suggested that thevestibule area (which shares the same embryological origin with the bladder lining) canbecome irritated by the normally acidic vaginal secretions. That is why some peoplecomplain of bladder problems occurring concurrently with having vestibulitis. It is likethe skin which normally should handle acidic conditions, becomes inapt in doing so.(Similarly to stomach lining getting burned by the stomach juices without mager irritantsbeing present). In my case, the Dr. suggested to wait a couple of months to see if thereis further improvement. Since I have been improving on my own, she proposed I may try adiet that excludes acidic foods (tomatoes, alcohol, apples, vitamin C, nuts, avocado,nutrasweet, coffee, chocolate, plums, tea, cranberries, grapes, spicy foods, etc etc), andlimit an intake of foods that contain Tyrosine and Tyramine amino acids. If my conditionwill not improve, I will consider having her to remove a pice of skin on both sides of thevaginal opening (the size of a finger nail). The new skin that grows in it's place shouldbe healthy. It is a quick and simple procedure with a reported success rate of 60-90%. Therecovery time is about 10 days-3weeks depending on the size of excision. I also asked herhow preganncy may effect this condition. She suggested that estrogen levels certainly playa role. When a woman is pregnant, the estrogen levels are low. So, some MAY feel animprovement. However, right after the birth, when a new mother has to breast feed, theestrogen levels are very high, so some feel more pain and irritation. I will post again ina month or so with an update.
CommentTo anybody that has gone to a physical therapist for vestibulitis: What do they do?? I have vestibulitis on my right side only. What is weird is that if I touch my rightside right below my hip area, it is extremely sore. I wonder if that is related or not tothe vestibulitis. If anybody else has this, please write back! Thanks, LisaM
CommentThis message is for Melissa: Thank you for your message. I will ask the doctor to give me a stronger prescription.It definetely stings at first but does not work better after that. Thank you!
CommentRe: Xylocaine Candice: Xylocaine 2% gel is available without a prescription (in Canada anyway), butyou have to ask the pharmacist for it. The 5% ointment is prescription. Mary: The problem might be that the strength is too low, or it could be that you'reallergic to Xylocaine or one of the ingredients in the base. Some women who find that thegel/ointment irritates them have better luck with the 5% compounded in vitamin E oil. Youwould have to find a special compounding pharmacy in order to get this prescription filledthough.
CommentI've been suffering with this problem for many years and have tried many many things.At this point I feel I'm about 90% over it and looking for something to handle that final10%. Over time I've tried many many things. Doctors have been have no use whatsover I havenever heard a doctor use the term Vulvadynia and most have just been perplexed orsuggested I get psychotherapy. To complicate matters I have not only that disorder but awhole complex of problems, bladder problems, IBS, muscle pain, but by far the mostdevasting pain has been the vaginal pain which in the past got so bad as to make my everywaking moment a torture. The first thing I found that helped at all was something calledHomeopathic Tissue Salts and I still use them to this day, especially one called Mag. Phoswhich relieves cramping. I used to take that tissue salt every 15 minutes all day long.What I thought was a burning pain was really predominatly a cramping pain and thatrelieved a great deal of it after a while. Tissue salts have also been good for havingmany problems, its good for chasing the "bump under the rug" that seems to wantto shift from one problem to the other. Another thing I've found exceptionally helpful isto use Nutribiotic Skin Cleanser and Tee Tree Oil Inserts by Thursday Plantation. I usethese everyday if necessary. My symptoms had been so bad in the past as to nearly give mea nervous breakdown and these things have at least resulted in major pain reduction.Recently I've read about some Amino Acids Glycine, BCAA and Arginine which are supposed tonormalize oxalate excretion in the kidneys. I think its helped some but its not a bigchange. I'm also trying Calcium Citrite. It can help at times but I haven't found it to beagain, of any major help. Yoga and relaxation are also very good and working throughpsychological issues is a very major help. If I get over this completely I feel likewriting a book. I hope this helps somebody. I'd hate to see anyone suffer as much as Ihave.
CommentThis is to Lisa M-- I have the pain on my right side as well--sometimes it's just the right side of myabdomen--the skin feels bruised a bit, like someone smacked me pretty hard. I also feelthe pain in my hip joint and the right side of the pubic bone. Really odd, and reallyannoying. Sometimes it makes it so I don't even like to wear elastic undergarments. I justthought I'd add that to your posting. I wonder how many other's have this pain?
CommentIs there anyone out there that could help me with a male 5 year old that refuses to"poop" in the potty? If so, I would be so grateful.....
CommentAlthough I already signed the guestbook I don't know when they get posted and afterdoing so I realized there was so much more to say. Maybe I just feel relieved beyondbelief to find a place where somebody would understand what I have gone through with thisthing. I feel I've had enormous improvement but still suffer from attacks of it, a verylow grade version of it, that really is more like discomfort than pain. There have beenperiods when I've completely recovered. I keep trying to figure what to do next. I've hadto be very careful about my diet. Does anyone else have this experience.?For years I couldeat no fruit or bread, or grains. I just subsisted on vegetables and meat. This was veryhard but it helped a whole lot. The hard part was that my friends and in-laws just treatedme like a lunatic because they didn't understand what I was going through. I think foodsensitivies have been a big part of my problem but with homeopathy some of them have begunto clear. For the first time in years I've been able to eat fruit which I love. I thoughtfor a while I had the classic Candida problem but somehow I just didn't fit with that. Icould follow that protocol to the letter and it didn't make any difference, however Icouldn't eat any sugar at all. Now I can eat some sugar but I really have to be careful. Iwent to a homeopath for a couple of years and I had some improvement but she was usinghigh dose homeopathy and I felt overwhelmed by that. When I quit going and started usinghomeopathic tissue salts in very low does I started gradually getting better. I'm curiousabout this low-oxalate diet, that seems to have a little bit of an effect for me, but notthat much. In homeopathy there is a condition called "gravel" which means smallcrystals of oxalates, phosphates and urates are excreted causing pain and discomfort andthe kind of remedies that treat that have been of some value to me. In reading everyone'sentries I don't see a lot of people using alternative medicine. Personally, I've foundthat most herbs aren't of much use in this problem. The only thing in that sphere I'vefound that works is Pau D'Arco with Calendula Skin Salve by Alta Health products and as Imentioned in my previous entry Tea Tree Oil Inserts by Thursday plantation and NutribioticSkin Cleanser. All these things help me a great deal. Its my opinion from dealing withthis for a long time, that its not just one problem but a complex of problems probablyhaving to do with a muscular problem ( as in fibromyalgia), a nerve component thrown in,and probably an allergic or immune component and in my case definitely a psychologicalcomponent. Thats why I have more faith more wholistic approaches which can try to dealwith everything all at once. Right now I'm working with accpressure, yoga, breathwork, andmeditation. If you get something like this it puts you on a spirtual journey really thatchanges your life. I can really feel for anyone who is out there suffering terribly withthis. If nothing is helping you might try getting some tapes by Ticht Naht Hahn onMindfulness. It tries to teach that even if you are suffering there are still things youcan appreciate in life.
CommentHi I'm new to this board, and I've read all the messages. I'm having a really hard timeas I'm not sure what I have. Last Sept. I started taking Accutane and one week later wasthe start of a yeast infection. I stopped taking Accutane after 2 weeks. For two months,I've been perscribed all the lotions & potions & creams, until my GYN suggested Igo back to the dermotologist for some answers, as the last smear was neg for yeast. I havethis burning rash on the labia m, that would not stop. Dermo has perscribedprednisone,2tab for 5 days,then 1 for 5 days, then 1/2 for 10 days. He also gave doxepinfor 30 days for the anxiety I've been experiencing. I'm in my 2nd week & see someimprovement, burning is a little less painfull & the rash appears to be shrinking abit at times or maybe wishfull thinking. Over the past almost 3 months, I've had sextwice, they were the only good days I've had, but did not experience pain during sex, onlythe next day from being raw. I'm so confused at this point. Most messages indicate painfulsex or pain upon touch. I don't seem to be experiencing this, only this horrible rash,which does get painfull. My dermo tells me that it could have been brought on by theAccutane or I could have had a reaction to all the creams & lotions and that he willdo everything needed to fix this. After searching the net and finding some helpfulsuggestions in dealing w/this kind of discomfort, I found this board. At first it scaredme that so many women are in such pain & that this is now happening to me , but nowI'm relieved that I can talk to this board and maybe get a read on what's happening to me.Sorry for the long message. By the way, I had Bartholyn Cyst surgery in March, which was ajoy, other than that no other problems. Thanks
CommentI 41 years old and have been married for 21 years to my husband David. We have withthree beautiful children. My husband and I were married young (age 20) and neither hadsexual partners prior to marriage. I began experiencing burning in 1990, three years afterour son was born. I had had yeast problems occasionally during pregnancy and while on thepill for a few years before, so never doubted it was anything else until it kept going onand on. After a year of no results from treatment, I switched doctors and got a diagnosisof "vulvar vestibulitis". At that time, it was in the literature even less thanit is now. My doctor did a biopsy and said they typed a sexually transmitted virus--HPV.He was so convinced of the results of the test and I thought at the medical profession neweverything, so as a result I went through months of doubting my husbands faithfulness--which seems ridiculous now. However, it was emotionally tormenting. Then I was convincedthat I got it from a toilet seat. My doctor suggested laser surgery and showed me picturesof women who had had the top layer of their skin removed. I said no thanks. He suggested Igo to Johns Hopkins where a doctor was performing a surgery at the time. I never did. Ijust went through a series of trials with topical steroids and vaginal interferoninjections. All under the premise that it was viral. Nothing worked. In 1997 Dr. David Foster moved here from Johns Hopkins (the guy my doctor had spoke of)to Rochester (New York) to the women's clinic at Strong Hospital. I felt my prayers wereanswered when I learned from the NVA that he was one of the doctors on their board. I haveseen him for the last 3 or 4 years now and it has taken this long to get a firm diagnosis.The surgery he does, would not help in my case. Although I still have not had abreakthrough I am grateful to be with a doctor who deal with this everyday. This is hislife's dedication. The good thing was that he immediately dispelled the myth that it wasviral. He said many women were wrongly told that they had HPV. After trials of lidocaneinjections, many topical medications, physical therapy and bio feedback, Dr. Foster hasruled that mine is not classic vulvodynia, but pudendal neuropathy. Mostly because my painis on one side during intercourse, with burning is all over, not just in the vestibule.The frustrating thing is that although we now it is never damage, the treatments for themhave not helped. Nerve blocks do not stop the pain when vaginally injected haven't helped.I have tried anti--depressants, anti-seizure drugs and most recently a heart drug--all ofwhich are used for this type of pain, but none has done much and the side effects areworse than the disease. I went to one of the pain clinics in our city and saw a doctor whowas actually an anesthesiologist--(can't spell). I was referred there because Dr. Fosterhad me have an MRI which revealed a torn disc in my lower back (L5, S1).After chroinc (butnot major) back and hip problems on the left side all of my life (sciatic--sp?), I thoughtthere must be a connection. My chiropractor and a neuron surgeon said the back and thispain could be connected. But the pain clinic doctor has ruled out a connection between thehip and vulvar pain. Personally, I think my back has to some how be related to this. Howcould those nerves effecting my tail bone, not also be causing pain in the pelvic area?But no test so far has confirmed that (I also had a discogram.) The anesthesiologist does,however, confirm what Dr.F said-that my vulvar pain is damage to the pudendal nerve. Hegave me a cortisone injection in my back, but he did not want to do any more or lidocaneinjections in the back because my back is not bad on a daily basis and it could cause newback pain. He diagnosed my tail bone as having some type of spasm and since the injectionsI have that pain in my thigh. ( That's why your case sounded so much like mine.) He's theone that told me to ask Dr. Foster to send me to a neurologist for a spinal cordstimulator. Dr. F instead works with a urologist who uses them to treat insistal cystitis(spelling) which is also connected to vulvodynia. I also have burning when I urinate, soit makes double sense that I see a urologist next. -I'm not sure you wanted to have this much detail about my sitiation. The bottom line: no one knows the source of this type of pain, nor how to cure it. Whenthey say it is chronic, that means it may always be. Yet when I fear that is the cold,hard reality I am reminded to "hope against hope". I am a born again Christian,and if it were not for God's sustaining grace I would have lost my mind, perhaps ended mylife and seen the end of my marriage by now. My husband went through a time where hedoubted he wanted to live in a "sexless" marriage (sexually dysfunctional is abetter term because we do have sex in a distorted kind of way). But God has changed hisheart and healed the bitterness and resentment that both of us have harbored at times. Iam grateful to know a loving God. That doesn't mean I don't have bad days. Believe methere have been some dark ones overthe last 10 years, but God always gets me through andsustains me with His peace. So far this month I lost 3 days of work--several for a urinary tract infection that Ithought was a flare up and one due to that stupid heart medication that made me sick to mystomach. I don't drink caffeine any more and it has helped. I think there is a nutritionalconnection. At least I know this: my body perceives stress more when I am hyped up oncaffeine. I have fewer muscle aches as a result of not drinking it. Decaff makes me burn,I'm convinced. I use topical lidocane a lot during the day.It helps. I do run, to answer your exercise question, but have been very lazy in the last sixmonths. Exercise makes me feel better all over. God Bless!
CommentI had vvd for several months earlier this year. It would occur just before my periodand then go away after it. Finally I saw a doctor and she prescribed me amitriptyline.This worked for several months and I only got slight flareups when I was stressed. Butlately I've noticed that the pain returns now and then. It's not as bad as it used to beand it's not internal. It's mostly that I have a sort of small lump towards the backleft-hand side of the vestible that most of the time doesn't cause me pain but lately hasbeen getting sore. Sometimes it has a red dot on it and the area around it is red too andthat's the source of the pain. What I was wondering was if the vvd was somehow caused by the heat? All winter I wasfine but it's been very hot recently and that's about the only explanation I can think of.In that case it was probably pointless taking the antidepressants as they weren't reallytreating my vvd. Also when I last went to the doctor she said that my vulvar lips were slightly stucktogether and causing some irritation. So I was wondering if maybe that could have happenedagain. And my last attack occurred AFTER my period and if I'm coming up for one again it'sBEFORE. So I don't know if the hormonal reason is still valid. I'd really appreciate some feedback on this. Especially from anyone who thinks thatmaybe the weather is something to do with it. I know that sounds silly but like I saidthat's about all I could think of. I haven't been stressed recently or anything.
CommentQuestion for Leslie Hi Leslie, I have a question for you: did you have the children before you started with theproblem? I asked you this because I want to get pregnant and it is becoming reallydifficult for me emotionally and of course physically. I have had on going buring and painfor two years. Apparently it was rare candida, now it is gone but I still have burning andpain. And I really want to have children but I am afraid I will have a difficult pregnancyor the baby will have problems. Could you give me some feedback on this topic? I wouldreally appreciate your experience..
CommentI have vulvadynia. I am currently taking an antidepressant for the pain, but began alsotaking Ultram. Anyone use Ultram along with Antidepressants? I read that there is a chanceof seizure. Please post if you have any info.
CommentHello everyone, this is my first time posting and I haven't read all of the guestbooksso I hope I don't sound too repetitive. I'm 23 years and have finally figured out that Ihave a form of vulvodynia. I'm posting this because I truly believe that this conditionhas been over simplified, or is much, much to broad for us to truly comprehend. I've readseveral cases where women believe that th VV started because of diet or drug therapy. I'vehad vulvar sensitivity from the time I was a small child and believe that I was actuallyborn with the condtion. I've never been able to have sexual intercourse and experiencecyclical pain that worsen right before menstruation. The burning/stinging/itching aspectof my VV didn't start until I reached puberty, and it's a mystery I'm still trying tosolve. I would like to say however, that I have been able to have a sex life withoutintercourse. I know this is a sensitive subject for many women, but I want to put it outthere. Even if your vagina cannot be penetrated, you still have a clitoris that mostlikely will respond positively to stimulation. I've been able to reach orgasm severaltimes, and have learned alternate ways to enjoy sexual activity--please don't give up anddon't believe you can't "please a man" because of your condition. You have theright to enjoy sex your way.
CommentHello Everyone, I have spent several days trying to read as many entries as possible in the guestbooks.The information and support here is truly amazing. Excuse if I repeat old questions. I have one main question: how many women have VVS or vulvodynia in conjunction withcervicitis, cervical pain, or even HPV? My story is this: I suddenly "got" VVS 3 years ago, or noticed some pain andburning. It was found that I had a bacterial infection. Antibiotics were given. Paindidn't go away. More antibiotics. Vaginosis comes back. Then cervicitis is noticed, andmild dysplasia. When it was finally recognized that infection was not the cause of my pain(something I had known or felt already) I was given lydocaine and steroids for the VVSwhich, thankfully for me, was mild compared to the things I have read here. Even so, thesetreatements didn't work. Sex is painful, at times very much so, but usually just mildly soand very uncomfortable. Libido drops, dryness sets in, more problems. As my many"infections" seemed never to fully resolve, I was tired of the antibiotics.Without realizing it might be helpful to the VVS, I was on anti-depressants for 9months...and slowly the VVD vanished or at least GREATLY diminished (although I didn'tknow this, being in between sex partners at the time--I also went off the pill.) So, I have in total: VVS (very mild or in "remission" status at the moment,although still a bit of burning at times and with urination), recurring bacterialinfections, and a very friable cervix that bleeds when touched and has mild dysplasia. Sexis painful again, but because of my cervix (which is made worse by my retroverted uterus,I know, and the endowment of my lover). I am trying to figure out what the interrelation (if any) of these various problems is.From the vulva to the cervix my vagina has some serious issues, so to speak, and what isrecommended to help one often hurts the other. Does anyone else have this particular conjunction of cervical pain, possible HPV (whoknows with this "catch-all" diagnosis), and VVS? If so, any suggestions forplaces to do more research or techniques for management?? Thank you all so much, Angela
CommentHI Anne, You say you took doxepin. It brought me a lot of relief but I had to stopusing it because I noticed I got horrible pimples in my face. Did you get any kind ofreaction to it? Thank you, Mary
CommentHello, I have written here twice before. I am 24 and suffer from this crazy condition.It started out 3 years ago as vestibulitis,, I tried Imiprimine which helped for a fewmonths. Then the condition came back full force, all over 24 hour pain. I have been inphysical therapy for four months now. Very expensive.... I am feeling better. I still havegood days and bad days. Sex is still a rare occasion in my relationship. Anyhow, I was wondering how many other women suffer with CHRONIC constipation? If so,does it affect your Vulvar pain? E mail me, THank you, Steph
CommentI have had Vulvodynia for 8 years now. I am 26 years old. Like everyone else, I havehad some terrrible flair ups, unsuccessfully seen multiple doctors, and am depressed dueto it. I recently used Terazole for a yeast infection and now have a painful burning flair up,which brought my vulvodynia back to where I was 3 years ago. I went to an excellent dermatologist who had me feeling better 3 years ago, but she isno longer in practice. Can anyone reccomend a doctor who specializes in this in theNY/NJ/CT Metro Area- hopefully someone who takes insurance. I am from Rockland County, NY. I am recently married and am really so sad that I am not enjoying life again. Thanks for listening.
CommentTHIS MESSAGE IS FOR STEPH: I'm just responding to your question about chronic constipation. I, too, have problemswith that. I've never really put it together with an increase in vulvar pain, but then,I've not been able to find much of a pattern at ALL with vulvodynia. It seems to have amind of it's own! Anyways, the thing that is helping me VERY much to deal witht the constipation is acereal called "Uncle Sam Cereal." You can see what it looks like at thefollowing site: http://low-carb.com/low-carb/unsamcer10oz.html It's absolutely LOADED with fiber. And, amazingly enough, it actually TASTES GOOD! (Iwas expecting it to taste like cardboard, but it doesn't!) I'm able to get it at my grocery store. But, apparently, you can order it online, also. Hope this helps! Deborah
CommentAfter seeing a multitude of doctors and enduring every kind of treatment forvulvodynia,none of which worked, I finally found Dr. William Legder at N.Y. PresbyterianHospital (the same hospital as Dr. Glazer). He is the head of the OB/GYN department andhas done gene research in this area. Instead of putting me on an anti-depressant or having me use some kind of harshastringent, he prescibed 25 mg. of Flexeril, a muscle relaxant. While the only realdrawback to this medication is that it makes you tired, it's easy to overcome by taking itat bedtime. Your symptoms gradually disappear over a period of a month and then you stayon the medication for an additional month for maintenance. Dr. Ledger's experience is that you may have a "relapse" in a few months, butthat one week on the Flexeril usually clears the symptoms permanently. This doctor is a reseacher and has treated thousands of patients and has found Flexerilto be the drug of choice...so, please suffer no more...get your doctors to prescribeFlexeril. I don't know the mechanism by which it works, but it does work. From what I understand, vulvodynia is a type of chronic pain syndrome, but it doesn'thave to be a lifelong sentence if you take Flexeril. I'm living proof and I was one ofthose people that thought I would never be cured.
CommentI have a question for Susan. Hello Susan, You said your doctor put you on 25 mg of Flexeril. . . How long did youhave to stay on it? Was it for a few months, and then if you got a flare-up, take it forone more week? Please advise. Also, is this only helpful if you have muscle problems?Thanks.
CommentPlease tell more about the Flexiril. Does Dr. Glazer recommend this as well? It makessense to me that this would help, but it is the first I have heard of this. Do certainfoods bother your symptoms? Have you heard of the Low Oxalate Diet? Sometimes I think it'sfood and other times I think it's stress. Please post as soon as possible.
CommentPlease tell more about the Flexiril. Does Dr. Glazer recommend this as well? It makessense to me that this would help, but it is the first I have heard of this. Do certainfoods bother your symptoms? Have you heard of the Low Oxalate Diet? Sometimes I think it'sfood and other times I think it's stress. Please post as soon as possible.
CommentI noticed that many of the women who describe pain during sex said that it startedafter giving birth. I found this website which seems to think that a possible cause forthat pain is from a tipped or retroverted uterus. The pain occurs when the penis hits thecervix or uterus during sex. The website states that some women are born with it, but manywomen develop it after giving birth. I hope this insight helps some of you. See www.inletmedical.org
CommentHere are some of the things which have worked for me: * Sertraline at 50mg a day (underthe trade name here of Lustral). Amitriptyline just made me put on loads of weight anddidn't tackle the pain anywhere near as well. However I have just come off the Lustralafter about 10 months as my hubby and I want to try for a baby in a few months time - ifwe can ever have sex again, of course! I've also come off the Pill for the same reason andhope that may help. * Cotton sanitary towels. Got mine from the States, fromwww.eskimo.com/~babytown. Much better than any paper products, even those which are madefrom non bleached paper. * Toilet paper which is non bleached and non coloured * Hugewhite cotton knickers for those days when you have to wear underwear! Wearing them manysizes too big stops the elastic irritating (something that's affected me only since I hadvulvodynia). Okay, they're not the most attractive things in the world, but they help! * Iam sure some of you will recoil in horror at the thought of using anything other thanwater to wash with, but I use aromatherapy oils in the water on those rare occasions whenI have a bath, and so recently decided to see if I could use oil to wash with when Ishower. And I have found grapeseed oil to be really useful! Just a couple of handfulsleaves me feeling cleaner than using water alone and leaves a soothing layer of oil on theskin which makes it much more comfortable when I dry myself. P.S. I also have polycysticovaries - anyone think they may be connected in some way?
CommentI started going to an acupuncturist recently to alleviate the pain I have during sexualintercourse. (i.e. vestibulitis) She suggested taking acidophillus. I took one pill andbroke out in hives and a bad case of vulvodynia( raw, itching, burning feeling on my vag .lips. Can anyone suggest any remedies? I am too afraid to go to another doctor who willtreat it as another yeast infection. Thanks.
CommentJen B. You could try bathing in Aveeno oatmeal. It's very soothing. I hope this helps.
CommentThis is for Deborah. I just bought some glucosomine and PharmAssure Calcimate Plus.WasJust wondering how much you were taking. If you were taking the prescribed amts on thebottle or more. Chris
Commenthttp://www.geocities.com/~debbie_fox/adhesio.htmPlease check out this website for some interesting information on something I had neverheard about that can cause pain similar to some vvd pain. I heard about this conditionfrom another woman who is seeing the same Dr I am for what started out as hormone relatedissues. He became interested in the fact that both of us had vvd and started thinkingabout what could be causing all our pain. While showing this other woman how to clean theclitoris properly he discovered clitoral adhesions. He cleaned the one side and will dothe other side next week. She was painfree on the side he worked on! I also want torecommend this Dr to any one living in the Puget Sound area. He is not a vvd specialistbut he is kind, caring, willing to listen and wants to help. He is really into women'shealth issues. He has written several articles and books and thoroughly researches thetopics he is interested in. I truly believe he would make this his next cause if he heardenough vvd stories and saw other women suffering with vvd. He actually gave both of us hisemail address and told us to email him articles that we thought might help him to help us.Finally a local Dr who cares AND wants to help. If any one wants to know more about thisDr, please let me know on this list and I will get back to you. Diana
CommentHi Mary In response to your questions concerning Doxepin, no, so far no breakouts on myface. I'm taking 10mg per day, if that makes any difference. I've only been taking it for2 weeks now and feel fine w/it. As far as this rash goes, I'm starting to think it'shormone related. The day before I got my period, I was burning so bad and the rash wasreally red. Once I got my period, it seemed to almost vanish. Now after a few days I canfeel a little bruning feeling comming back. I'm so afraid of this comming back full force.Will keep you posted. I've also been taking calcitate, apholophillus, B vitamins, YeastFighters, by Twin Labs, + E. for about 1 month. Does anyone just have this"rash" which seems to be most painful when it gets red on the labia m area.However, no pain w/intercourse. This does not sound like VVS, or is it. I posted here on12/12/00. Going back to dermo on 28th w/hopes of further relief. Thanks
CommentThat article (the one Diana posted the link to) was very interesting. I recently had avvd flare-up recently and went to my doctor and what she found was a slight adhesion in myvulvar lips (though not in the clitoris.) The adhesion was at the 6 o'clock point. This iswhat she found the first time I went to her with vulvar pain and she separated it and thenI was fine for several months. But lately I'd been having a few flare-ups and couldn'ttake it any longer. And that is what she found again. She said that sometimes these adhesions are there from birth. Also, like that articlesaid, sometimes they just happen for various reasons. My doctor prescribed me someestrogen cream (which is mostly used by post-menopausal women and I'm only 24!) to useexternally in the area as that helps separate the adhesions and I am already feelingbetter. Before I went to the doctor (silly me waited almost 4 months before seeing her) I usedto have pain only around my period but since then my flare-ups have just come and gone,without a real link to my period. Also I guess the way my vulvar was at different times ofthe month affected the adhesion in different ways. But I'm glad that I seem to have found a source for the pain and I'm hoping with thistreatment (and a lot of praying!) it will help solve my problem.
CommentI have a small fold of skin on my vulva that looks like a little bump. The doctor saysit's nothing to worry about and is just a piece of skin but I've been reading somearticles on vulvar cancer recently and can't help but worry. But I'm only in my early 20sand it isn't something women that young usually get is it?
CommentDear All Can anyone recommened an insurance company that covers biodeedback? thank you all
CommentTHIS MESSAGE IS FOR CHRIS: Regarding the Pharmassure Calcimate or Calcimate Plus: I am actually taking LESS thanthe bottle says. I eat/drink alot of dairy products and am also taking a multi-vitamin, soI don't want to OVERDO the amount of calcium/vitamin D, etc. that I'm getting. Remember, you CAN overdo it on vitamins, so be careful. Hope this helps! Deborah
CommentHi, I have had vulvodynia for 30 yrs now off and on. I finally after all these yearsknow it names. I had Dr. Solomon test me for oxalate and sure enough I have high oxalate.At least i know what causes the irritation now. I tried the calcium citrate but had a badreaction to it so am now trying the diet which helps some. My dermatologist said to trySBR lipocream to help as a barrier cream so I was wondering if anyone has tried it and ifit has helped. Just curious........
CommentMary, where do you get SBR Lipocream? Is it an over the counter product?
CommentSEEMS LIKE I'M THE ONLY GUY TO POST HERE BUT THIS IS OF CONCERN TO ME. MY WIFE HASSUFFERED FOR ABOUT ONE YEAR. SHE HAS HAD THREE EPISIOTOMIES THE LAST ONE SEVEN YEARS AGO.WE DISCOVERED A SMALL PAPER CUT LIKE TEAR AT THE BASE OF HER VAGINA. THE TEAR WOULD OCCURDURING INTERCOURSE AND HEAL WHEN ABSTAINING. SEVERAL CREAMS AND NO RESOLVE LATER WE SOUGHTA SPECIALIST WHO RECOMMENDED ELIVIL. MY WIFE DECIDED AGAINST IT AND HAD SURGERY. HERDOCTOR REPAIRED A RECTOCEL, A BULGE OF THE RECTUM INTO THE VAGINA; REMOVED SCAR TISSUE ANDREATTACHED MUSCLE. ONE MONTH LATER A SMALL TEAR HAS APPEARED, WE DID NOT HAVE SEX. SHETAKES GRAPEFRUIT SEED EXTRACT TO PREVENT YEAST INFECTIONS. SHE DID USE BORIC ACIDVAGINALLY TO GET RID OF A YEAST INFECTION PRIOR TO SURGERY. LOW OXILATE DIETS EXCLUDENUTS, CHOCOLATE BERRIES , BLACK TEA AND SEVERAL OTHER FOODS. I LOVE MY WIFE AND ALTHOUGH ITHOROUGHLY ENJOY MAKING LOVE I DO NOT WANT TO SEE HER SUFFER. I BELIEVE THAT WITHSUFFICIENT RESEARCH MORE AND BETTER ANSWERS WILL BECOME AVAILABLE. DO NOT SUFFER INSILENCE, TALK TO YOUR DOCTORS SEEK HELP. A COMPASSIONATE PARTNER WILL UNDERSTAND. GODBLESS YOU ALL AND DON'T GIVE UP.
CommentCan someone recommend a specialist in Madison, Wisconsin or somewhere nearby? I wouldalso be curious to hear more from anyone who has tried Dr. Glaser's protocol. thank youall for sharing your stories.
CommentFRANK: Thanks so much to you for your note of encouragement. Your wife is a very lucky womanto have such a supportive husband. My husband, too, has been very supportive, and I'm verythankful for that. I'm sure it means the world to your wife, as well. Bless you.
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CommentI just located this site and am so happy and relieved to share my feelings with others.I have has vulvodynia and vulvar lichen planis for 4 years now. I started with painseveral days after the delivery of my second child. After 9 months of depression, and notany answers, I finally located Dr. Jessica Thomason in Milwaukee, Wisconsin through theNVA. They also have a newsletter which is reasurring and beneficial. Please just rememberthis in not in your head and help is available. Do not give up!
CommentI just located this site and am so happy and relieved to share my feelings with others.I have has vulvodynia and vulvar lichen planis for 4 years now. I started with painseveral days after the delivery of my second child. After 9 months of depression, and notany answers, I finally located Dr. Jessica Thomason in Milwaukee, Wisconsin through theNVA. They also have a newsletter which is reasurring and beneficial. Please just rememberthis in not in your head and help is available. Do not give up!
CommentTHIS NOTE IS FOR DEBORAH, from 12/11: Sorry for the delay in getting back to you. The messages I saw concerning glandularimbalances led me to post because gladular imbalances can sometimes be traced to some typeof deficiency, vitamin, mineral, amino acid, enzymes, or co-enzymes which ultimatelyaffect how effective and effecient our physiological processes function. It's been notedthat bee pollen possesses all of these needed ingredients and in just the right ratiosthat the body needs them to be in (smart little guys, those bees!). It would only seemnatural that by supplementing our diets with bee pollen, that as these depleted elementsbecome replentished, our bodies begin to operate more as they should. My step-father hasbeen able to reduce his insulin dosages by almost 70% since starting bee pollen almost ayear ago! In your original post, you said: "I would be interested in knowing if you figureout a way to help vulvodynia sufferers with massage therapy. " It's important youunderstand that I'm not your regular feel-good type massage therapist. I specialize in twoforms of bodywork, CranioSacral Therapy (CST) and Myofascial Release (MFR), both of whichaddress the connective tissue (fascia) system of the body. By addressing this specializedsystem, we also address the emotional component that almost always accompanies thephysical component, to provide a true whole body approach toward helping the body healitself. I merely act as a facilitator, following where the body leads me. The techniquesthese modalities employ allow that to happen in many cases. You can reread my original post dated 12/8/00, or visit my website at Hope you all have a wonderful and joyous Christmas! God Bless, Chuck
CommentERROR CORRECTION: I misspelled my own website address! Should have been: http://www.ahandsonapproach.com/ Sorry for the confusion.....
CommentI have been suffering intermittently with acute vaginal pain for the last two/threeyears. Earlier this year, I saw a Urology specialist, who didn't find anything wrong. Overthe last month I have visited a Gynacologist, who was unable to make a diagnosis! The lastdoctor has referred me onto another, suggetsing vistibulitis.....After finding your website, I am reassured that I will find a diagnosis and will be able to avoid furtherattacks. The comments re: Always pads are particularly interesting, as these are myprefered brand, but not any more.
CommentCHUCK: Thanks so much for taking the time to respond back to my questions. I do appreciate it! Deborah
CommentHi, To whoever asked about the SBR lipocream it is not a prescription I had mypharmacist order it for me it only cost $20.00 for a large tube.
CommentCan anyone recommend a doctor in the Miami area.
CommentHi..This is my first visit to this website. I am 34 and have many symptoms that appearon the site. I have been to three different OB/GYNs who keep trying to treat me for yeastinfections/chemical irritations. I am currently pregnant (3 months) and am sufferingimmensely with the itching and burning sensations. In fact - for the last year I have onlyhad sex TWICE because of the pain (and YES I DID GET PREGNANT!!!) I have tried eliminatingALL dyes, perfumes, scented products, etc. with SOME relief, but now it is back with avengeance. DOES ANYONE KNOW OF ANY NEW YORK (ESPECIALLY LONG ISLAND) DOCTORS THAT CANTREAT THIS CORRECTLY?? Also - can anyone recommend ANY non-irritating sanitary napkins orare tampons better? Any info would be appreciated!! THANK YOU!!!
CommentI find that when I have my flareups (which aren't that often these days thank god) andthey coincide with my period, tampons are better as if I use pads the flow seems toirritate me. At least with tampons you don't get that problem. And another tip is to cutthe string shorter as it can sometimes cause irritation if it's rubbing against soreareas. Mind you not all women can use tampons when they have vvd so I guess I'm one of the"lucky"(hah!) ones.
CommentWARNING CONTRIBUTERS! Be advised that anything you put in this guest book will beaccessible to anyone by a simple search of your name. I made the mistake of putting somepersonal information in the first book and have begged our good doctor to remove it forover a year. So far it's still there. I had no idea it was going to be public information!
CommentLISA and JONNI (and everyone), Just wanted to let you know that I just started going toa PHYSICAL THERAPIST who knows a lot about pelvic floor muscles and a little aboutvestibulitis. I get pain in my left buttock and leg and sometimes in my hip. Turns out oneof my legs is a little longer than the other and has shifted everything around - my hips,pelvis, pubic bone are all "uneven." No one knows for sure if that is alldefinitely related to the vestibulitis, but I think it is definitely worth looking into. Ihave found that my whole area down there is all tensed up so I am hoping that the therapyI am doing will begin to help. I'll keep you posted of any significant changes.
Commenthttp://www.geocities.com/~debbie_fox/adhesio.htmI posted this website about a week ago and I just wanted to post it again to let all ofyou know how important this information can be. I just got back from my Dr and was checkedfor clitoral adhesions. I honestly didn't believe I had them but wanted to know for sure.Well I do have them and I don't know for how long. I was just checked 2 months ago by aGYN and he didn't discover them. The Dr I saw today says they might have been there thewhole 2 years I have suffered from vvd. I have had numerous pelvic exams in the past 2years and no one ever found this until today. In fact this is the first Dr who everchecked my clitoris in the 30 years I have been having pelvic exams. We need to make Drsas well as other women aware of this.
CommentRebecca, I saw Dr Thomasen as well. I was on the same treatment program as you. She toogave me my life back. The treatment took about 9 months for me. I did not have the glandsremoved. I still have an occational flare up and swelling, but nothing like the state Iwas in. That was 4 years ago!!!
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CommentThis commment is for Susan. Did flexeril completely cured you. For how long have youbeen pain free. For a total of how many months did you use the drug. This is this is thefirst I have ever heard of this drug, so please if you can email me some information. I am18 years old and have been suffering this for 3 1/2 years. Does this drug work only if youhave muscle problem, this drug seems like it's the answer to my prayers, so please if youcan post up a comment or email me. Thank You
CommentDear Doctor Glazer: My thanks for creating this website, HOWEVER, it isorganizationally impaired. There are many excellent ideas for healing suggested by writersthat are impossible to find as there are SO many guestbooks now. If possible, could youplease create a new page which only highlights potential pain relief? It is important toshare our stories but even more important to find information quickly that may eliminatethe pain. For example, I wrote a year ago that myself (and 6 other women) have becomecompletely pain-free after having Active Release Technique (ART) treatments. FYI: thistreatment is somewhat like physiotherapy/massage but much more effective. Unfortunately,because there are so many new users to your website, information such as this is beingburied in the guestbook pages. You have done a great service by providing this outlet,please consider creating a "pain-free" story page. Again, my thanks.
CommentTo Melissa151@spam.org(?): Dr. Elizabeth Stewart is a Boston doctor who specializes intreatment of vulvar vestibulitis. I have been seeing her for approximately two years, andit has been helpful. I don't have her telephone number with me at the moment, but you canreach her at the Harvard Vanguard Medical Center in Copley Square. I think Dr. Stewartalso has an office in West Roxbury. Good luck!
CommentI was just diagnosed yesterday with vestibulitis - at first, I was relieved to finallyknow what's been wrong with me, but I am growing more and more concerned as I read aboutall of the pain that so many of you are experiencing. I have a normal life until Iexperience flare-ups, which have been (mistakenly?) treated in the past with Monistat,Diflucan, Metro-Gel, and Flagyl, depending on whether yeast or bacterial infections werediscovered. My OBGYN finally tired of my constant emergency appointments and referred meto another OBGYN who specializes in Infectious Diseases. He first diagnosed me withchronic yeast infections, which he treated with boric acid suppositories, a steriod cream,and a weekly Diflucan for 6 weeks. Yesterday morning I awoke with a terrible flare-up,which prompted my visit to him. (My pain is mainly at night and really bad first thing inthe morning, when I feel very dehydrated.) I have so many questions after reading thisguestbook - any answers would be very helpful! 1. Does this condition get progressively worse? I feel that it is relatively manageablewith my doctor's help, but I am very concerned that it could get worse after reading someof your extreme cases. 2. I have severe upper back, shoulder, and neck pain which causes headaches as well. Mydoctor does not think that I have fibromyalgia b/c I have a slight curvature to my spineand my pain is relieved when I exercise to strengthen and stretch those painful areas. (Ihave been told that the curvature and all of these aches and pains may stem from fallingand bruising my tailbone 10 years ago.) 3. I have researched the low oxalate diet on branwen.com, and I will try that approachand ask my doctor about the Calcimate Plus. 4. My flare-ups begin with urinary pain and urgency. I used to have frequent urinarytract infections, but I haven't really had trouble with them since having myabnormally-small urinary tract stretched several times about 4 years ago by a urologist.I'm thinking that biofeedback might be helpful b/c I seem to have had muscular issues inthat area for years. 5. I have been on the Pill for 10 years, and my periods got much lighter about a yearago. My original OBGYN dismissed my concern and said that was normal after long-term useof the Pill. However, I wanted to mention it for Deb, who asked if anyone else hadexperience lighter periods after onset of VV. Deb, your symptoms seem remarkably similarto mine! Thank you all for listening - I look forward to further insight! God bless!
CommentTO: ANNIE I HOPE YOU GET MORE SPECIFIC AND HELPFUL ADVICE BUT HERE IS MINE. MY WIFE HASHAD PAIN FOR ABOUT ONE YEAR, RECURRENT YEAST INFECTIONS AND MANY COURSES OF OVER THECOUNTER CREAMS. YOU MUST REALIZE AFTER READING MANY OF THESE POSTS THAT THERE ARE MANYDIFFERENT CAUSES FOR SUCH PAIN, DISEASE, HORMONE IMBALANCE, GENETICS AND ALL THAT IS YETTO BE DISCOVERED. MY WIFE USED BORIC ACID TO CLEAR UP THE YEAST AND TAKES GRAPEFRUIT SEEDEXTRACT IN JUICE TO STAY YEAST FREE. TRY TO IDENTIFY IRRITANTS AT HOME AND IN THE WORKPLACE. SOAPS, DETERGENTS, PERFUMES AND ANY OTHER CHEMICALS THAT EITHER TOUCH YOUR SKIN ORARE INHALED. CONSIDER SEEING AN ALERGIST AND DON'T GIVE UP. THE RIGHT GYNO WILL BECOMPASSIONATE. I'VE WRITTEN HERE BEFORE DO NOT SUFFER IN SILENCE, COMPLAIN. HOPEFULLY MORERESEARCH WILL BE DONE. GOOD LUCK.
CommentI am not a doctor, nor do I have a cure, but I can tell you right now that I have beenliving with this disorder for a long time. I know that I have tried everything!!! Can Itell you now, that I am fine. I have no problems. I've been writting to this site for along time,like I said before, stay away from soy. Yeah, I am not a doctor, nor do Idiagnose, but I am "good". I feel great. I have been trying to figure "thisproblem out". I really do believe that soy is the problem. I know that I've writtenabout this before, but I am as sure as ever. I have been on a natural diet for a long timenow, and I have no problem with vulvodynia. I wish you would believe me. I no longerinclude anything with soy "in it". Gosh, I think this is it. I don't know whatelse to say. Why can't something so simple be a problem? It is with dogs! Why are we sodifferen? Oh yeah, I forgot, are we not animals? Anyway, is not soy something so usedlately that we don't question it? No, we don't! If soy can increase our estrogen, what canelse happen? Yeah. Anyway, I've been on Dr. Adkins' diet for about two weeks, I've had noproblems. Not to say Dr. Adkins' rules or anything but it says something. I am not eatinganything that has been modified! I eat natural things. I don't eat anything with soy init! Just like I've said before, "soy is bad". You eat natural nothing happens! Iam no longer inflammed, itchy, red, sore, whatever! Please try this! I think that this isthe key. Please make sure to rule out everything else! I really think that this is it. Iknow that many of you will not believe me, or even try, but don't you think that it isabout time you try something a little less extreme? I do, and I did! Please give soyelimination a try. I'm sure you will agree. You will improve! Love Jessica
CommentSo you know, it isn't because I've been on the Atkins' diet for very long, it isbecause I've been eating simple foods for a long time. I don't eat anything that is notsimple, or natural. I got this idea when I went on the cabbage soup diet. I am not heavy,but like anyone, I like to keep myself looking "good". I just think America ismissing something. It is eating healthy! Too many people buy such "crap foods".Don't you agree? We are too busy to buy basics. Why do you think this is such a problemall of a sudden ( or since we as Americans discovered the profit from soybeans?)? Huh?I'll be interested in hearing what you all have to think about this. Have any of you triedto eliminate soy from your diets? I know one other person has, but I haven't heard fromher since. Well, good luck! I would love to hear about your feedback! Thank you, and loveagain, Jessica
CommentThis is to Mary: I wondered if the SBR Lipocream has helped you. I hope so. Sue
CommentHi this to Sue who asked about if I have started to use the lipocream what withChristmas etc. I have not used it yet. I am rinsing with water like the other ladies aredoing and I must say it helps some. I also watch my diet no high oxalate foods and thishelps some also. Thanks Sue for asking...Mary
CommentThis is for STEPH, CHRISTI, ANNIE, & FRANK: Steph from 12/15, Christi from 12/22, and Annie from 12/28: All of you ladies mention 3 things that are inextricably tied together. Steph mentionedCHRONIC constipation, Christi mentioned a leg length discrepancy and Active ReleaseTechnique (ART), and Annie mentioned an injured tailbone, fibromyalgia, and a spinalcurvature. What ALL of these symptoms and conditions have in common are fascialrestrictions. Christ and Annie hit it right on the head with structural imbalances, andSteph, I'd be willing to be that if you went back some time before your symptoms started(could be years) you might remember some type of injury/trauma you took to your pelvicarea.......coulda been a fall off of a bike, down stairs, off a horse, motor vehicleaccident (MVA), slip in the bathtub/shower, or something. Fact is, it all comes back toFASCIA, the tough (2000 lb/sq.in. tensile strength) connective tissue that surrounds eversinge cell, nerve, muscle fibril, and blood vessel in the body! First off, the colonpasses through the pelvic floor musculature, guess what happens when the muscles of thepelvic floor are hyper-constricted around the colon? Constipation. Guess what happens witha leg length discrepancy (could be caused from any of the aforementioned accidents,carrying a kid on a favorite hip all the time, driving in rush hour traffic with constantpressure on the brake pedal which would push the right hip higher than the left, etc.),the whole pelvic floor and everything above it is going to be compromised. And Christi, Ihate to say it, but after visiting a couple of sites on ART, it is EXACTLY what those ofus trained in the Barnes' method of Myofascial Release and Upledger's CranioSacral Therapyare trained to detect and treat, so please don't think that pelvic imbalances can only betreated with ART......I'd prefer to say that now there are 3 modalities that aresuccessful in treating it! Annie, by far, you have the most direct answer for your problems with recognizing thetailbone injury. Because the Pudendal nerve originates from Sacral Nerves 2,3,&4, itmakes sense that an injury to the tailbone (coccyx) could have anterotated the coccyxforward and up to where it's putting constant pressure on the pudendal nerve (whichinnervates the anus, perineum, vulva, labia, and clitoris) which could quite easilyexplain your symptoms in a nutshell, not to mitigate your situation any less than theothers on this site. But I would stress that if ANY OF YOU can remember a pelvic injuryoccuring prior to your symptoms (regardless of the time frame), I would definitelyrecommend finding an advanced practitioner in ANY of the aformentioned bodywork modalitiesas a possible means to find a solution to your dilemma! I would like to know if yourspinal curvature occurred before or after your coccyx injury. As for the fibromyalgia,it's nothing but a name that allopathic medicine put on chronic fascial restrictions, butdidn't know what to do with it except give pain meds and muscle relaxers for. People LOVEto be able to put a name on their symptoms, if for no other reason to finally say,"This is what I've got!" The only problem is what to do with the name once youhave it! Finally, Frank. Just a friendly lesson in netiquette. Every time you post to this listyou do it in all CAPITAL letters, which means you are shouting! Which, given the caringshown in your posts I don't think is the case, Please turn your Caps Lock *OFF*. It alsomakes your posts harder to read! Thanks a bunch...... I think you ladies are very lucky that Dr. Glazer is progressive enough to provide thiswonderful venue for you to share your experiences and anecdotes. It is very rare to see adoctor of allopathic origins to recognize soft tissue dysfunction as a CAUSE (most areonly taught to treat a symptom), but then provide a method (the Glazer protocol) as ameans to treat and REMOVE the cause, which is the ONLY way to remove the symptoms. My hatis off to Dr. Glazer!!! Please do not hesitate to write me directly if you have any deeper questions you wouldlike addressed or check out some of the links on my website: BTW, I just became aware of a website that addresses alot of the muscles in the bodyand how to strengthen them. Unfortunately there is nothing specific to the pelvic floor,but perhaps if enough of you write in a request it, they will add the pelvis in itsentirety. The site is: http://www.planetkc.com/exrx/Exercise.html Have a safe and Happy New Year!!! Regards, Chuck Olson, RMT
CommentTo all those of you out there sharing your pain! Thank you! I have just now begun toreach out. Now that I know there is hope! I suffered for three and a half years withsevere vaginismus,vestibulitus, vulvodynia,etc, the result of a terrible birth experiencewith my son, where I incurred extensive cutting and tearing. I tried everything. Biofeedback, creams, inserts, message therapy, everything. I went to every doctor andspecialist around. I spent tons of money, and all to no avail. My marriage and my selfworth suffered immensely. But there is hope. I know every case is different but if you arelike me you feel you have nothing to lose, and you are maybe even about to give up. Three months ago I began an exercise class. I went because my friend said it's a greatstrenghening class for abs, but and thighs. It is. But it has also miraculously healed theentire pelvic floor of my body, causing the muscle spasm (vaginismus)to stop completely,and the vestibulitus to heal completely. No lie. No more pain. I have no pain duringintercourse, and this improvement took place literally over six or eight weeks. After allI had suffered. I had really been unable to have sex, so I didn't believe it at first!Neither could my doctor! The class is sort of like yoga, but with lots of lunging and lower back strengthening.I will get the instructor's email for anyone interested. Please let me know, and don'tgive up hope.
CommentHi...I'm not going to bore everyone with the problems I've had because every entry onhere has explained it eloquently. I have vulvular vestibulitis, and I have gotten a lot ofrelief from taking calcium citrate. I've found that having a consistent dosing schedulehelps. I feel as if my body has grown accustomed to having the pill at certain times ofday. I would encourage anyone who is trying calcium citrate to give it six months beforeyou try something else. The pills gave me some relief immediately, but it took me a longtime to achieve a pretty stable result. Now, I have the occasional flare-up (often aroundmy period), but I'm 80-85% better (knock on wood!). I have some questions, though, and ifanyone could e-mail me with the answers, I'd appreciate it. 1. I've read that youshouldn't take supplements that contain Vitamin D. Is this true, and if so, why? 2. Doesanyone know anything about the relationship between formaldehyde (common in carpeting andother household materials) and vulvodynia? Thank you so much!!!!!!
CommentHi Chuck sorry about the overuse of capitals I don't type very well, didn't mean to berude. I'm sure your approach can offer some ladies relief, I do believe after reading somany of these posts that there may be many causes and eventually many treatments. Couldsome of these problems be due to injury, allergy, hormone imbalance, genetics kicking in,toxins? Too many variables. More research is needed. We saw the top Dr. in Ct and he saidserotonin levels were to blame. He advised high doses of elivil. My wife said no and herewe are. She did need surgery to correct some damage from childbirth, however the surgeryand new scar did not resolve the tearing.I support and love my wife and wish the same forall the ladies suffering from this terrible illness. I pray that you all keep a positiveattitude, try with caution some of the remidies you see here. Some women seem to getbetter, there is always hope. Good luck Chuck sounds like you are doing some good.
CommentThis is my first entry. I am 39 and JUST found out that I have VVS or vestibularadenitis. I have pain during intercourse, and then severe pain, redness, burning,swelling, and sometimes lesions (sores) for several days afterwards. I am currently 3 1/2months pregnant. I knew something was wrong with me before we got pregnant but my Dr.didn't know what it was. (I was only checked for herpes which was negative.) Finally Idecided to see Dr. # 2 who diagnosed me with VVS. I feel that I should contact aspecialist after reading everyone's entries. I feel so lost and upset. DOES ANYONE KNOW OFA SPECIALIST IN THE BALTIMORE, MD AREA ?? DOES ANYONE KNOW IF ANY TREATMENTS CAN BEADMINISTERED DURING PREGNANCY?
CommentThis is for Melissa and Frank, Melissa; what I know about vitamin D is that the body has to have it to metabolizeCalcium, which is one reason why most calcium supplements include vitamin D with them. Thesun naturally caused vitamin D to occur in the body, but for those up north who may notget as much sun as those in the south, you need some way to supplement the vitamin D too.Don't know why you were told it was bad, other than too much of anything can be bad, whichcould be said of calcium too. Frank; you asked: Could some of these problems be due to injury, allergy, hormoneimbalance, genetics kicking in, toxins? Too many variables. The unfortunate truth is that any of these could be a contributing factor, with injuryleading the pack most definitely. One thing that hasn't been mentioned too often is theimportance of drinking alot of water each day. Now I know everybody HATES to hear that,but the fact is, our bodies are 86% water. If you don't rehydrate your body with at least6-8 glasses of water a day, TOXINS build up in the liver and the intestines draw themoisture out of the food we eat, which then causes dehydrated food to pass through (ortry!) our intestines, which translates into CONSTIPATION! We you are constipated, thewaste products are no longer passes through the body's digestive system but are absorbedby the body itself, which can lead to gout, general malaise, and symptoms offibromyalgia........just to name a few! So get a cheap little faucet water purifier andstart drinking more water girls!!! I must say that Tamsin's comments on exercise were encouraging too (but also somethingthat we don't want to hear or have time for) because it underscores what Dr. Glazer and Ifeel are at the bottom (no pun intended) of alot of pelvic floor dysfunction, muscularweakness and dysfunction. One word of clarification that has been brought up offlist. Pelvic floor work maysometimes involve the need to work internally as well as externally, especially in caseswhere episiotomies, hysterectomies, c-sections (see a pattern here?) or other severe softtissue damage has occurred. The same could be said for men who've had radiation treatmentsfor prostate cancer, where not only was the prostate irradiated, but everything around it,often times leaving men impotent, incontinent, chronically constipated OR diarrhetic. Theonly way you can directly treat these muscles is intervaginally or interrectally. Oneother reason why it's so important that when looking for a bodyworker, that they have BEENTRAINED in internal work and are very familiar with internal anatomy. One word of caution,unless you are VERY COMFORTABLE and TRUSTING with your therapist, you should ALWAYS have awitness (whether an office assistant, husband, good friend, etc.) present when doinginternal work. If the therapist you're working with disagrees, it's time to find anothertherapist! Know your states guidelines too. Usually the State Board of Health will knowthis. Regards, Chuck
CommentThis is a comment for Kimberly that posted on 01/01/01 -- I was treated by Dr. StanleyMarinoff for vestibulitis following childbirth. He runs the center for VulvoVaginalDisease and Disorders in Washington DC. You could get his phone number from informationI'm sure. It would be worth your drive -- I had three years of pain and frustration alongwith many medications and creams -- he did surgery and it was 100% successful.
CommentTHIS MESSAGE IS FOR CHUCK: Would you know of any reputable therapists in the Charlotte, NC, area? I hate to justpick somebody out of the phonebook! Thanks!
CommentI am just coming out of two months of pain, and would like to tell about the following,which helped me enormously: 1) Aloe vera gel. You can buy it at the health food store.When I was very irritated, it burnt for a second when I put it on. Then it felt very cold.It took away the pain and swelling. It felt like I was sitting in a cold pillow! It helpedme get through the day and the night. Try to get the purest gel you can (the leastpreservatives and additives). 2) Chamomile tea. This helps enormously with the urinarytract symptoms. Three cups a day or more and I felt a lot better! (Don't drink if you areallergic to ragweed.) 3) Clearly my problem has been from yeast. If you think yours istoo, contact Marjorie Crandall. She is a Ph.D. researcher who is working on yeast problemswith an emphasis on vulvodynia. She can mail you an info packet for $20. You can call herat 310-375-1073 or go to her website at Yeast Consulting Services. She recommendstreatment with oral anti-fungals like Diflucan. I am not going this route -- I havelocated an excellent doctor who will treat me with alternative medicines/therapies. ButDr. Crandall's packet really helped me understand what is happening in my body. Then Icould make my own decision about treatment. Please e-mail me if any comments. Good luck,ladies!
CommentHi everybody, I have been away for a while on vacation. I am from Brazil and I went back home. I havesome interesting news for you: I went to see the doctor there. I was diagnosed once again with rare candida.Theinteresting part of this is that I have also intestinal candida not only vaginal candidawhich is a lot harder to get rid of. My doctor told me that is not normal that somethingelse is wrong in my organism so he sent me to an inmunologist that is a also an allergist. He found that my defenses were really low. The candida is an "opportunistgerm" which means it comes when the body is not in good condition. He gave twotreatments: One for the candida of 6 months of duration Fluconazol twice a week(difluxcan) and a suppository once a week. Also a cream for my husband since he probablyhas it. And then a treatment to get stronger again. The candida wont leave unless you havegood defenses. A lot of vitamins and better food. Change of lifestyle etc. He gave me some hope and contrary to what I heard here, THERE IS A SOLUTION. So girlhang in there. I know all the cases are different but the fact that there is no cure forthis is anacceptable. (sorry for my spelling but two weeks of vacation was enough to ruinmy English) So good luck and let me know if you have any questions.
CommentHello- I am currently trying to get treated for vestibulitis by an acupuncturist. My pain ismostly upon entrance of a penis. Has anyone had any success with acupuncture? Did theacupuncturist treat the vagina directly with needles? Any insight would be much appreciated. Feel free to e-mail me privately.(jenbarenholtz@yahoo.com) -Jen
CommentMy brother is bi-polar&cannot receive any proper treatment.He suffers reallyextremely bad from this illness. Can you help with information on this illness and similarillnesses.This would be much appreciated in regards to helping my brother.I want to seehim live somewhat of a normal life. Thankyou!
CommentLadies, please pay attention to this. Doctors have been hurting us and not listening toour vulvodynia/itching burning troubles. Take the matters into your own hands. GEt off theantibiotics!! Watch your sugar intake for a couple months. Eat a couple helpings a day ofgreen leafy vegetables. Take vitamin e and c and acidopholus Try some acupuncuture!!Please!! No one helped me and I want to help others!! At least give it a shot. I haveimproved so much since trying all this. Helpful books include "Women's Bodies,Women's Wisdom" by Christiane Northrup. "The Yeast Conncection" By williamCrook. Please give it a shot. I've had quite a turn around.
CommentLadies, please pay attention to this. Doctors have been hurting us and not listening toour vulvodynia/itching burning troubles. Take the matters into your own hands. GEt off theantibiotics!! Watch your sugar intake for a couple months. Eat a couple helpings a day ofgreen leafy vegetables. Take vitamin e and c and acidopholus Try some acupuncuture!!Please!! No one helped me and I want to help others!! At least give it a shot. I haveimproved so much since trying all this. Helpful books include "Women's Bodies,Women's Wisdom" by Christiane Northrup. "The Yeast Conncection" By williamCrook. Please give it a shot. I've had quite a turn around.
CommentLadies, please pay attention to this. Doctors have been hurting us and not listening toour vulvodynia/itching burning troubles. Take the matters into your own hands. GEt off theantibiotics!! Watch your sugar intake for a couple months. Eat a couple helpings a day ofgreen leafy vegetables. Take vitamin e and c and acidopholus Try some acupuncuture!!Please!! No one helped me and I want to help others!! At least give it a shot. I haveimproved so much since trying all this. Helpful books include "Women's Bodies,Women's Wisdom" by Christiane Northrup. "The Yeast Conncection" By williamCrook. Please give it a shot. I've had quite a turn around.
CommentLadies, please pay attention to this. Doctors have been hurting us and not listening toour vulvodynia/itching burning troubles. Take the matters into your own hands. GEt off theantibiotics!! Watch your sugar intake for a couple months. Eat a couple helpings a day ofgreen leafy vegetables. Take vitamin e and c and acidopholus Try some acupuncuture!!Please!! No one helped me and I want to help others!! At least give it a shot. I haveimproved so much since trying all this. Helpful books include "Women's Bodies,Women's Wisdom" by Christiane Northrup. "The Yeast Conncection" By williamCrook. Please give it a shot. I've had quite a turn around.
CommentLadies, please pay attention to this. Doctors have been hurting us and not listening toour vulvodynia/itching burning troubles. Take the matters into your own hands. GEt off theantibiotics!! Watch your sugar intake for a couple months. Eat a couple helpings a day ofgreen leafy vegetables. Take vitamin e and c and acidopholus Try some acupuncuture!!Please!! No one helped me and I want to help others!! At least give it a shot. I haveimproved so much since trying all this. Helpful books include "Women's Bodies,Women's Wisdom" by Christiane Northrup. "The Yeast Conncection" By williamCrook. Please give it a shot. I've had quite a turn around.
CommentLadies, please pay attention to this. Doctors have been hurting us and not listening toour vulvodynia/itching burning troubles. Take the matters into your own hands. GEt off theantibiotics!! Watch your sugar intake for a couple months. Eat a couple helpings a day ofgreen leafy vegetables. Take vitamin e and c and acidopholus Try some acupuncuture!!Please!! No one helped me and I want to help others!! At least give it a shot. I haveimproved so much since trying all this. Helpful books include "Women's Bodies,Women's Wisdom" by Christiane Northrup. "The Yeast Conncection" By williamCrook. Please give it a shot. I've had quite a turn around.
CommentDr. Glazer, I just found out I have Vulvodynia and immediately went to the internet forresearch. I am so glad to find this web site. I started experiencing pain duringintercourse after the birth of my son in May. After reading about Cyclic Vulvovaginitis itseems that maybe the Thrush my son and I had after taking antibiotics for his birth mayhave triggered this, since it is said to be caused by a hypersensitivity to Candida. DoesThat make sense? Does anyone know any doctors specializing in this disease in the SanFrancisco area? Any help would be appreciated. Thanks again for this wonderful web siteand thanks for this sounding board!
CommentHi, We re trying to form a support group for VV sufferers in Jerusalem or in Israel. Pleasewrite to me at above address if you are interested. Shalom
CommentI have been searching the NVA site on various occasions for some help for myself. Ihave been diagnosed with Vulvodynia and have an appointment coming up at a vulvar clinic.The problem is that I would not describe what I have as painful, so I do not know if Ihave been misdiagnosed or not. I am seeking all the information that I can before I see aspecialist in the field of vulvar problems. I will have to travel far from home to seethis specialist and I already know that it will be a consultative visit. I know I willhave to go back and I believe my reaction to this will be less than friendly. Afterwaiting 6 months to get in and having had another 6 months of less than adequate sleep, Imay be abit hostile when I am told to come back in another 3 or 4 months. The cost isimmaterial. My quality of life is important to me. I dread to go to bed because all theitching and burning seems to be personified and I know I have to get up for work the nextday. I am a teacher; a special education teacher. I have alot of responsibilites and manylittle and not so little people relying on me. What do I do. This has been going on for atleast 5 years and I am at my wit's end. This is the first time that I have been able toexpress how I feel. I tried to enrol in the Chat Room and it said that I was a member ofeGroup, but then I could not access it. I feel that I really need to talk to someone. Herein Canada, a doctor treats you like they would cattle. My doctor of 32 years would probalynot even recognize me on the street. That shows you how confident I am in the medicalprofession. I only know that I would be considered incompetent if I handled myself likesome of the doctors I know. I have seen alot in my 50 years and I hope things improve inmy next 30 years. I have a nephew, whom I brought up, who is currently attending MichiganState University. He wants to be a doctor and he has been keeping me abreast of anydevelopments concerning vulvodynia. He put me onto Allegra, because the medication mydoctor prescribed made my head foggy the next day and I was reluctant to take it. I trulyhope there is something else out there, short of surgery, that will help. Thanks forlistening, Debby
CommentDear Dr. Glazer, Regarding the guest book. If someone wants to respond to a letter I have submittedwhere would I find/or how their reply? Thank you, Judy
CommentHave any of my fellow sufferers found a way to reduce vulvar swelling? Does ice work?I'd appreciate any tips as that seems to be my main symptom lately. Thanks.
CommentTo Debby: Sorry you are facing such problems with Health care. My wife has beensuffering from this disease and I have posted a few things here. She does get seen by herGyn much quicker here in Ct. but he cannot help her. He called today and told me she had ayeast infection, I asked if she could use boric acid suppositories and that was the extentof our conversation. He did not ask about her pain, he did not ask how we were doing . Iknow that the Doctors do not have the answer, so they delay, deny, prescribe cream aftercream and hope you will go away. I believe it will take research to find the cause andtreatment.There have been so many harmful things introduced to our diet and environment.Drugs are prescribed then recalled because they are found to be hazardous. I live in theNortheast and to protect my family from WestNile virus I spray my property with a approvedinsecticide. That " safe " chemical was recalled, taken off the shelves. We arethe test animals here and I don't mean to sound paraniod. The deodorants, shampoos, soapsand all the rest of what touches our skin might somehow contribute to this illness. I haveread many of these posts, the women range in age from fourteen to sixty. How long will theMedical Business ignore your suffering? I wish you relief from your pain and strength todeal with it.
CommentFor those of you who have had biofeedback: Is it normal to feel worse at first? I have had 4 appointments with the physicaltherapist. She has given me exercises to do on my own. I feel worse after I do thoseexercises, but I am hoping that it is just because my muscle is weak and once it getsstrong again the pain will diminish. Has anyone had a similar experience?
CommentDoes anyone have experience with clobetasol (steriod ointment. . . yuck) ? I was justprescribed it, but I'm wary as I''ve had bad experiences with steroids before. . . .thanks!!
CommentRuth, I was told that steriod creams should only be used for a sort time if at all b/cthey tend to thin the skin rather than thicken it.
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CommentA couple of years ago I questioned my wife's Gyn about a topical steriod cream. I saw aOprah show and the Gyn on the show said that it enhanced the libido. I know this is a bitoff the subject but I'm trying to make a point. He and I argued back and forth as to thesafety and effectiveness. I then asked if he would at least check her hormone levels. I'ma guy and this Dr. did his best to put me down and shut me up, I feel sorry for women whohave to deal with insensitive Drs. Bottom line when they say levels are within the normalrange they could be borderline low or high. I don't know what optimum levels are but I dothink the time is near when that will be taken into consideration. My wife has been usingEstrace for about six weeks, she is supposed to use it for three months. I have read thewarnings and they are scarry. There is a balance of Estrogen and Testosterone I'll bet thebody gets thrown out of balance when these creams are overused. By the way the Estrace issupposed to toughen the vagina, it has done nothing to strengthen the vulva . My wifestill has tears and nothing seems to help. Don't let your Gyns ignore your complaints,speak up. Good luck to all.
CommentFrank, does your wife use the Estrace cream only on the vulva or does she insert itinto her vagina? I've been applying it to the vulva for a few years now. It worked verywell for over a year now, but lately I'm burning again. I have an appt. with a new Dr. andI hope that she's a good one b/c I'm getting real tired of seeing uncaring, ignorant,nasty Drs. too. I'll probably spend the rest of my miserable life searching for one. Ihope your wife will experience some relief after she's been on the Estrace cream forawhile. Good luck. Sue
CommentTo Sue: Thankyou for the encouragement and I wish you all the best. My Wife's Gyn. toldher to only use it internally, he said it is not intended for external use. Since she hasbeen using it her external genitalia , the labia look different. The Dr. said it could bethe result of the Estrace. I think he prescribed it primarily to strengthen her internallybecause he did some repair surgery in her vagina. He has not suggested anything to addressthe tears externally . The expert we saw in Ct. was pushing elivil and that is notsomething my wife will use. I know he said the elivil would relieve the inflamed nerves inher vulva but I think they are just trying to drug their patients into silence. I'msounding paranoid again sorry, this is so frustrating. I was very ill as a child and Ihave a fasination with health and medicine. We lost a child to genitic disease and I justkeep learning more about things I wish I did not have to. I hope I live long enough tofind the cause of this disease and all of it's different symptoms and cures. What changed? My wife and I have been together for nineteen years and except for the yeast infectionsshe had never experienced pain or tearing. I just don't understand how or why thishappened, but that puts me in good company neither does anyone else. We and the Pros havealot of theories but no answers. I meant to say thankyou and ended up sounding negative.Kind of gets to me. Bye.
CommentFrank, I'm unclear about something you said. Is your wife's labia looking better orworse after using the Estrace cream externally? Sue
CommentHer Gyn said not to use it externally only internally. He did not suggest anything touse externally to relieve the tears. Her labia seem disproportionate, changed somehow. TheDr. said this could be a side effect of the Estrace. My wife does not question himextensively and did not find out if he meant the medicine somehow altered the apperaanceof her labia because it impacts blood hormone levels or that it comes into contact withthe labia as it dissolves and is discharged. There is a fine line between asking questionsand annoying these Gods. When I questioned him about the testosterone cream which isapplied topically I asked if it was systemic or none systemic. What that basically meansis does the active ingredient impact the entire body or just the area to which it isapplied. Well that was a five minute argument, he finally said it was local to the area.They don't like to explain how these things work or what the side effects are. I stillthink more accurate blood hormone readings and will reveal a problem for many women .Modern medicine just is not there yet, so until it catches up those of you who are havingproblems related to hormones will not be helped.Thanks for asking Sue.
CommentDEBORAH, Write me personally with your zip code, area code, and 3 digit prefix and I'llsee what the directory shows!!!
CommentHi, guys, If anyone in Washington state is interested in joining a local list, one now existsthrough egroups. To join, go to www.egroups.com and sign up, if you are not already a member. Then do asearch for WashingtonVulvodynia. You can also find it by looking under the listingsHealth: Women: Diseases and Disorder: Vulvodynia. I'm technically the moderator, although I don't foresee being incredibly active on thelist (any more than I am here, anyway) - I've had to cut down my list participation latelybecause of other demands on my time. But if you know of any other Washington areasufferers, let them know. Thanks, Erica
CommentAnybody else with vulvodynia also suffering from fibromyalgia? If so, what are yoursymptoms? I've not been diagnosed with fibromyalgia, but I've been developing new aches andpains, different from my long-standing vulvodynia symptoms, and am wondering if this iswhere I am heading. Thanks.
CommentJESS, Regarding your 12/29 entry, I remember a while back reading something in one ofthe guestbooks about how soy and soy derivatives are in a lot of food. I don't eat soyitself, but maybe other products contain soy that I do not know about? Could you point meto your earlier guestbook entry. I agree that cleaning up the diet and eating whole andsimple foods can help to heal the body.
CommentHello, My wife has v.v.s. It is probably one of the hardest things we've had to dealwith in our marriage. We both waited to have sex with anyone untill we got married, justto find that we couldn't. If has been hard to bare. Is there anything I can do besidesbeing understanding? I know that goes a long way, but we've been married for almost twoyears, and had actual intercourse 4 or 5 times. It may seem shallow, but I want that to bea part of our relationship. Thanks for any help anyone could offer. Email me atenochw_44@hotmail.com. Thanks.
CommentI want you to know how happy I was to find your website. The peace of mind I receivedjust knowing that others have gone through the same things I have. You have a tremendousamount of valuable information. Thanks to you I have found a potential solution to mydiscomfort. Many thanks!!
CommentEvery so often I check back to this website, mostly to try to communicate my experiencewith vulvodynia, and hope that it helps someone, or at least causes them to think of otheroptions, than what the medical community is telling them. This is a little long, but Ithink it is worth your while to read it through to the very end. I suffered with vulvodynia for eight years. My symptoms were off and on itching,constant feeling of being raw and inflamed, change for the worse in vaginal odor, afeeling of cut glass, painful lymph nodes, and sometimes like acid was running down myvulva. I also had dark redness around the opening to my vagina, and what looked to me tobe an overall inflammation. I did the usual story of going from doctor to doctor. Iinsisted on cultures over and over again. To me my symptoms meant bacterial infection.Well, of course for years no standard cultures came back with anything to treat. My anxiety level was beginning to grow. I felt like I was shaking practically all daylong. I had doctors who not only did not believe me; they also were condescending to me. Ihad insurance companies not wanting to pay for me to seek a specialist, which they weresupposed to pay for if their own doctors could not help me. No one around me had everheard of having chronic vulva pain. And, some days I was in so much pain I could hardly domy job, I would just sit in my office and cry from frustration and discomfort. About four years into my battle I decided to try to get pregnant. I was lucky enough toget pregnant the first try, but just two weeks after my missed period I miscarried. After the miscarriage, I had the need to take an antibiotic in Latin America. I feltsignificantly better, but also had just started other new meds like elavil, kenalogointment, and estrace. I tried to insist it was the antibiotic, but no one would listen. A year after that my doctor cultured me for ureaplasma urealyticum. It came backpositive. The doctor prescribed Doxicycline 100mg b.i.d.for 10 days. Around the fifth dayof the meds it was miraculous!!! I felt so much better!! Several days after stopping themeds I relapsed. My doctor said she had seen that in some of her other vulvodyniapatients. I argued that it was not enough meds and my spouse should be treated. Icontinued to have trouble convincing my doctors. Over the next two years now and than a doctor would prescribe me an antibiotic eitherto try to fight the vulvodynia or for something else. I now had more data and I tookpictures of my vulva and the improvement on certain antibiotics. Doxicycline worked,Augmentin worked, Flagyl worked, Zithromax did nothing. Skipping to my seventh year with chronic vulva pain I decided to try to get pregnantagain. Again, on the first try, I got pregnant. I miscarried again. Immediately after Istarted trying for a pregnancy…it actually took two months trying, but I was pregnantagain! And, miscarried again! I had also begun to develop pain on my lower left side that I believed was my colon,but was near to my ovary. I finally found a doctor in New York, Dr. Attila Toth, who believed/agreed with me. Heconducted cultures on both my husband and I, and told MY HUSBAND AND I to takeclindamyacin intravenous. After the Clinda I.V. I no longer had pain in my lymph nodes, the odor from my vaginaldischarge was substantially improved, and my pain was about 75% better. My overall rednessimproved significantly and the deep redness at the opening of my vagina was slightlyimproved. I still got irritated easier than I did 10 years ago, but my daily life wasgood. I was no longer in discomfort every day. I think the ongoing infection caused damageto the tissue (biopsy showed sclerotic tissue and eosinophils) hopefully over time itwould get better and better. Within the next year I suffered three losses of pregnancy. Two miscarriages, andfinally on my fifth pregnancy I had an ectopic. I finally decided it was time for surgery.In retrospect I believe the surgery was a mistake. The surgery did prove that I hadextensive adhesions, plus endometriosis, and fibroids. My left ovary and Fallopian Tube onmy left side (the side of the ectopic) was all meshed up in a ball. My colon on that sidewas adhered to the ovary/tube mess. My surgeon was able to separate my colon from theovary, and my digestive symptoms have cleared up about 95%. My surgeon said that it seemedas if there had been a long-standing infection creating all of the adhesions!!! What I hadsaid all along. I cried for a week. The medical community had allowed me to becomeinfertile. Immediately after my surgery I began to have bright yellow discharge and bright yellowcloudy urine. Finally, after four months of complaining about the discharge and notgetting pregnant (remember I always conceived easily prior to surgery) I begged forantibiotics. I took some orally and my symptoms subsided during the administration of themedicine, but returned after stopping. I decided that the surgery had let whateverinfection had still been there run a muck…probably leading to new scar tissue thatwas adhering my tubes in a way that no longer allowed for conception. Once again I decidedto go to Dr Attila Toth, who prescribed for my husband and I another IV. This time we usedMefoxin and then Unasyn. Mefoxin was chosen on the basis of my cultures and Unasyn waschosen on clinical observation of my relief in symptoms when using Augmentin orally. Following this IV I feel 95% better. I still have minor discomfort every so often, andmy periods seem to aggravate my vulva, but on the whole the IV was miraculous! Intercourseis not painful, although I still need a little extra lubrication. Vulvodynia for me is like the peptic ulcer story. No one could believe it wasinfectious (and of course it is not 100% of the time). The patients were told to eatcertain foods to control symptoms and that they were too stressed in their life. Thepatient’s fault. Well, now we know it is generally a bacterial infection. Withvulvodynia we are told to do things to relieve the symptoms, and that our body is justgoing haywire for no known reason. I think it is an infection. In the end I am still left with anxiety when I need to see a doctor. I go over in mymind a million times, how I will present whatever is wrong with me, so that I will betaken seriously. I will try for a few more months to become pregnant, on the hope that thelast course of IV antibiotics gave my reproductive tract a chance to heal, but there is agood chance I am facing either IVF or adoption. I am not trying to scare you about your fertility, although I do think that theinfection that can cause vulvodynia is damaging to the entire reproductive tract, but thedamage takes time, like chlamydia. I do think that you can have vulvodynia for otherreasons, but it is my personal belief that the majority of cases is bacterial infection. Some people have said they see a correlation betwwen going on the pill and developingvulvodynia--did you ever stop to think that at that point the condom finally came off, andnow he infected you? I personally did not change at all in my pain level whether I was onthe pill or off. Some people say that they think it started after having a yeastinfection, and using topical medicine, like monostat, for it. Did you ever stop to thinkthat you were developing vulvodynia/bacterial infection, mistakingly thought it was yeast(doc's often make this mistake too) and that your vulva was irritated from the infection,and the topical stuff was only more irritating, but in the end the medicine did not CAUSEyour vulvodynia, you started being sick before the medicine. The bad news is I do not have a magic cure, because I do believe now that differentwomen respond differently to different bacterias, so it is hard to know which antibioticwill be the right one. I do have a simple test though...Rinse your vulva every day afteryou urinate with plain water using a squirt bottle. Take a bath (only water) at nightbefore you go to sleep. Dry the area well, a cool hair dryer is the best. Do this for 3 to5 days. If you have significat releif it is stuff in your discharge that is giving youpain. If it was hormonal this would not help. If you want more info on what I think you can email me. Jennifer
CommentThis is for Jean (Sallymut@aol), who posted in October 2000. Jean, we have the samedoctor at K.U. Med. Center. I'd be interested in hearing from you: what treatments Gunteris proposing for you and whether you are participating in her TENS study. Hope you'redoing OK. Beth
CommentThis is for Jean (Sallymut@aol), who posted in October 2000. Jean, we have the samedoctor at K.U. Med. Center. I'd be interested in hearing from you: what treatments Gunteris proposing for you and whether you are participating in her TENS study. Hope you'redoing OK. Beth
CommentI was diagnosed with lichen sclerosis. I've had it for three years. It came on rightafter taking antibiotics and at that same time I also got pregnant. I at first thought itwas a yeast infection, but after that treatment it didn't go away. I then attributed it tomy pregnancy, but after that was over, it didn't go away and kept getting worse. I startedgetting some fusion and sex began to be unbearable. Anyway, a similar story as others, andalso all the treatments I tried. The steroid cream, which subsided the itching, but aftertwo weeks, the burning increased. I quit that, and to be honest, I don't like steroidsolutions as that is always the solution when doctors don't know what else to do. Tooklots of Omega vitamins, which seemed to help a little. Tried another antiobioticcombination, but that made it flare up really bad and rapidly increased the fusion. Wenton allergy medicine, Allegra, which actually seemed to help the symptoms quite a bit. Thentried, I believe it's called Guafinesin as I found that in a small research report andthat seemed to help out even more. However, and this is pretty strange I know, but I hadthis dream to use cod liver oil. So, being desperate, I thought weird dream, can't hurt totry. I contacted my mother because I remember when I was little she tried to make us drinkcod liver oil and I would refuse because it's nasty. I asked her why wondering if thatwould help explain my dream, a little subconscious trauma from the past. She just saidbecause it was supposed to be good for you, so that was no help. Anyway, thought what theheck, I'll try it for a month and see what happens, can't hurt. I drank one teaspoon twicea day (and it is nasty stuff). After about a month, my symptoms did seem improved. Then Irealized maybe I should apply it topically as well. So, I continued to drink the stuff andapply it topically. Anyway, after about 3 months, I had this horrible, nasty dischargethat smelled like fish and lasted about 4-5 days. It was so gross, I decided that was it,I was quitting the stuff. Anyway, after that week, it was better. I had no itching orburning. It's been 3 months since that time, and I have been just fine and have been ableto have painfree sex again. It did start to itch one day, so I applied the cod Liver oilone time, and it was fine after that. My fusion has not repaired itself however, but thathasn't bothered me. Anyway, I just thought I'd put it out there, this cod liver oil thing,as it has seemed to help me and I'm wondering if it was just some fluke thing or ifsomeone else wants to try it, if it works for anyone else. I'm not sure what in the codliver oil was helpful. It's got the Vitamins A and D, or if there is something in theactual fish oil that worked. Would be nice if there was a less nasty way to do it. Icertainly recommend that if anyone tries this, to always wear a sanitary liner. Asmentioned, I drank 1 teaspoon 2x's per day and applied topically 2x's per day. I wanted toshare this if it may possibly help anyone else and to give some hope as with everyone withl.s., I was told it was incurable and shown these horrible pictures how the disease couldcontinue to progress. I personally feel this is a miracle for me and am so grateful.Thanks for this site!
Commentpretty sure that cod liver oil is what is in desitin for diaper rash.
CommentThis is for Chuck. I 100% agree with your statement that, "But I would considermyself somewhat of a soft tissue expert. THE most damning cause of dysfunction in women isSCAR TISSUE! Not only episiotomies, c-sections, hysterectomies, gall bladder removal,endometriosis, etc., but ANYTHING that leaves especially a deep scar and compromises thatfascial web." But, I feel you have overlooked bacterial infection as a cause of thescar tissue. You can look back at my posting on 1/12 to see my own experience. A majorityof these women have deep redness at the area where there vaginal discharge sits on theirvulvas. I believe that the discharge is full of interleukins which crete inflammation onthe vulva caused by an infection higher in the reproductive system.
CommentPlease Help! The last doctor I went to see for treatment of vulvar vestibulitisprescribed a cortisone cream for use 4 times a day for 8 months. Since it wasn't workinghe finally suggested I discontinue use and try Desipramine. A few weeks later he suggestedI try the cortisone cream (Pramosone - to be specific) again in addition to theDesipramine. Within a week I had persistant episodes of burning/irritation. I finnalychecked out the use of cortisone creams in treating Vestibulitis on the Internet and foundout that overuse can make symptoms worse. I asked my Dr. if this new irritation could befrom overuse of cortisone creams causing thinning of the vulvar skin. He insists thiscould not happen. I can't get to another doctor until the end of May. Has anyone hadexperience with over use of cortisone creams? If so what can be done until my appointmentwith this new doctor? Are there any other explanations for this sudden onset ofburning/irritation?
CommentThanks, Chuck, for your info on the vitamin D. Do you know about any of the long-termeffects of taking excess Calcium and/or Vitamin D? To all of the ladies posting here--yourstories break my heart. I hope we all find relief.
CommentMarilyn - you wrote a while ago that youve started using a transdermal gel made up ofamitriptyline and baclofen. I have found a pharmacy to make this up for me and beforebeginning its use wanted to hear more from you - do you find its helping ? ( I hope so),after how long a use? do you know whether the clinic in U of michigan where you aretreated have a record of success with this combination? is it completely lacking in theside effects of orally taken amitriptyline? i hope you are finding relief in this creamand any other treatment you are using. Thankyou and thankyou everyone for writing in withexperiences, advice and support. Wishes for pain free days for us all... Tamara
CommentHi everyone...It's been a while. About 3 months, I think. I last posted in October inthe 13th guestbook regarding my visits to a chiropractor and the success I have beenhaving in lessening my vulvar pain. I have been going days at a time being pain/symptomfree...When I do have a 'flare up', it does not last 'forever' and with a quick visit backto Dr. Gale the pain subsides and goes back to almost nothing to nothing. I am notexaggerating...I do though hesitate to really talk and talk about my 'fortune' only forthe fear of jinxing myself. You see, this is what I call the real 'scar' ofvulvodynia...the head/mind games it plays on you...."Is it really gone? When is itgoing to return? I know if I do 'that' it will come back..." I don't know if thesefeelings/fears will ever go away; But I can FINALLY begin to believe that (my) vulvar painwill eventually go away. Please read my post about ART. My genofemoral nerve (located inmy hip flexor) has been entrapped by muscle scarring and tightness...My chiropractor hasphysically - hands on - 'worked through' this 'mess' in my muscles...in turn, my nerve(which runs directly to my vulvar region) will continue to be 'released'. **Because thisnerve has been entrapped is the reason why I have vulvar pain**It's all connected. In thepast, I have urged you to please see a PT and/or chiropractor to at least see if you haveany structural damage...and maybe they can help. I was 'happy' to see that Shannon had asimilar situation and went to a chiropractor as well and is having the same progess as me.I plan on e-mailing you Shannon. That's about it for now. Good luck to all of you. Takecare! PS...try to think past all the 'infections' and medications...That's a sore subject(for me). For so many years and years I (supposedly) had infections and so manyunneccesary meds...Funny how I haven't had one infection in over a year, huh? No meds...ofany sort any more. Just a thought.
CommentI had been suffering from painful intercourse for the past six years. Six months ago, Iwas diagnosed with vestibulitis and was given various medications for my pain. Themedications worked only temporary then I found out about Dr. Glazer's pelvic floorrehabilation methods which entails using a biofeedback machine and inserting a part intothe vagina 20 minutes twice daily to reeducate the weak muscles. This has truly beenamazing... In nearly a month I was enjoying pain free sex, and actually having passionatesex no less. I am very grateful!!
CommentThis is my first time with all of you but I thank God I have found you. I was told bymy OBGYN that I have vulvadynia about 3 months ago although I have suffered with this for3 years now. Like many of you I too went to my doctor and each culture came back normal. Icould not imagine what it could be. My OB put me on an antidepressant 10mg AMITRIPTYLINE iTAKE AT BEDTIME AND A STEROID CREAM FOR A LIMITED TIME. I am still on the antidepressantand use Vit E combined with Primrose oil. After intercourse I apply a all naturalDiaper-Care cream to my vulva and it calms it down. It is made by Weleda and contains ZinkOxide 12%, Almond oil, Lanolin, Hydrolyzed beeswax, extracts of Calendula and ChamomileFlowers. It may sting at first and I clean myself before I apply it and I find that ithelps. I bought it in the natural food store. The folks in the natursl food store havebeen more helful to me in finding ways to ease the pain then the doctors I have seen!Leslie, I appreciate your openess in shareing how God has been your strength through allof this. I too am a beleiver and this is certainly a trial I would not be able to overcomeif not for Jesus. My husband has been very supportive. He married me even when he knew Ihad this problem. Wow Huh? I have written down many notes on creams and tips I am eager totry . Like Paul, I prayed that God take this from me. But Gods answere was the same for meas was with Paul. Thats right," My grace is sufficient for Thee". I Still havemany things to be thankful for, my eyesight, I can hear a bird sing and a preacher preach.And I have the ability to get around and enjoy this miracle called life. I feel all ofyour pain each one of you. You are not alone in this. Like I said in the beginning I'm soglad I found you. Thanks for being so open about your pain. Peace be with you all. Cindy
CommentI don't think that the amitryptiline/baclofen cream did much for me, however I amtrying it again now just to make sure. My pain seems cyclical and it is hard to tell whathelps until I have been through a whole month or two. Recently, I have started seeing aphysical therapist. At first, we did biofeedback doing Kegel exercises. She says my pelvicfloor muscle is very weak, so we worked on it for 4 sessions. Then I talked to her aboutmyofascial release that I had read about and she started trying that on me. I was veryskeptical, because all she does it put her hands on my abdomen and do a very lightmassage. She says that this therapy is supposed to release scar and adhesions in the bodythat prevent the body from doing its work. Also, she says each part of the body has itsown rythm that she can feel with her hands. She said during the first session that shefelt no movement in my abdomen at all, but by the end there was a little movement. Shesaid that the pain might be worse for 1 day, but should get better. She was right! I wasamazed. I feel at least 50% better right now. I am still cautious, because my pain iscyclical as I said. I am continuing the sessions. I have one today as a matter of fact. Iwill keep you all posted. I think that Chuck is on to something with this myofascialstuff. Give it a try, what do you have to lose.
CommentHi! I never had sexual intercourse before but i experience burning sensation everytimeI urinate and there are some droplets of blod coming out. I experienced this a day beforemy boyfriend and I almost had sex but did not. Is that normal?
CommentThis is to Rima: No, that is not normal. It sounds like you have an Urinary TractInfection. You need to go to your doctor and have an urine culture done. If it is an UTI,then a course of antibiotics will fix the problem.
CommentI posted a message in December 2000 to say some of the things which have worked for me.I saw someone was asking again about sanitary towels etc which don't irritate. Can I againrecommended cotton reusable ones? I have found them really good - you just soak them in anatural (ie eco friendly) bleach until you are ready to wash them (in just plain water). Igot mine on the Net from www.eskimo.com/~babytown in the States, but there are plenty ofothers who make them. Also, I have now been off the Pill for just over a month and I havealready seen a significant decrease in my pain. Hmm. Makes you wonder...
CommentI had written before looking for a good OBGYN in the Boston area. Someone suggested Dr.Berman and Dr Goldstein. Unfortunately they are not in my medical plan. Does anyone elsehave any suggestions?? Please help. ThankS
CommentTO CANDACE: There's a Dr. Elizabeth Stewart in Boston (no phone # was provided) and aDr. Harold Michlewitz in Brockton, Ma (508) 580-8682. Good luck to you.
CommentMASSACHUSETTS SPECIALISTS Dr. Stewart (GYN) sees patients in W.Roxbury, Burlington, and Boston - MASS. W. Rox(617)541-6646 Burlington (617)221-2940 Copley (617)859-5250 I see her now (and used to see Dr. Michlewitz...) If you need names of a Physical Therapist: Holly Herman Women's Health 617-576-3204Cambridge MASS Licensed ART Chiropractor: Dr. Peter Gale 781-449-5722 Needham, MASS Good Luck!
CommentI have a sister who is an undiagnosed victim of vulvadynia.She had terribleitching,actually she was raw in the vaginal area, also bleeding, very painful sex. She hadbeen on Natural Hormone Replacement , dropped the estrogen altogether, switched to the AimCorporations natural progesterone cream, the itching,burning,bleeding and rawness havedisappeared but the pain came back. She is also desperate and looking for relief. I hopethrough this website I can help her. Thank you
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CommentI can't believe how many women there are with this problem. It is both encouraging anddisheartening at the same time to read all of your stories and attempts to find a cure. I have been suffering with vaginal burning, redness and irritation since the first timeI had sex at age 21. I am now 30 and have been married for almost four years. I have hadintercourse without pain about three times in nine years. (I don't know what made thosethree times different.) My sex drive is so low that I was beginning to think I must have ahormonal imbalance of some kind. I went to a new gynocologist this past December for myyearly exam and for the first time a doctor put a name to my condition. She said that Ihave vestibulitis. I'm a bit confused as to the distinction between vulvodynia andvestibulitis, so I would be very grateful if someone could explain it to me. Also, whichof the many suggested treatments are right for vestibulitis? As I mentioned above, my symptoms include redness and soreness to the touch around theentrance to the vagina, together with a burning sensation during sex. The burning is atits worst during sex, but I do sometimes experience it at other times. Also, the severityof the burning is not constant. Sometimes intercourse is only uncomfortable and othertimes it is close to impossible to bear. I've tried all the usual stuff like only wearingcotton underwear, only using natural soaps, etc. I find that riding a bike and wearingjeans seems to exacerbate the problem. I spent the past nine years being told by onegynocologist after another that I have vaginitis, chronic yeast infections (for which Iwas given nystatin and many creams), bacterial infections (for which I have been on manycourses of antibiotics), but it was not until last month that a gyn. in Rochester, NY puta name to my condition that actually seems to fit. It's very upsetting, however, to knowthat there is no cure. I live in London, so I was very discouraged to hear from Sally Parker that the medicalcommunity here does not treat this problem seriously. Can she or anyone else recommendanyone for me to see here in London that might be able to help? The gyn. in Rochestercouldn't start me on any treatment because I live in London and she wouldn't have beenable to follow up with me. She did give me a prescription for Lidocaine 2%. It seemed towork a bit the first two times I used it during intercourse but the third time it didn'twork and almost seemed to make things worse. I was interested to read about the possible connection with spinal problems. I have afairly extreme case of scoliosis. Does anyone have any thoughts on this? Also, I developedsome kind of bowel problem about two years ago, which I have had numerous tests for. Thedoctors can't seem to find anything wrong with me apart from the symptoms I describe, sothey believe it may be irritable bowel. I was interested to read in some of the archivedletters that vulvodynia and irritable bowel have high rates of co-existence. I had thoughtthe irritable bowel might have developed from the time I spent living in Ukraine (from thewater or produce), but now I'm not so sure. Does anyone have any thoughts on this as well? I've been living with this discomfort for so long now that I had just about given up onever finding a solution. It really helps to have a name for the problem and to know thereare others out there looking for answers. I can't believe how ignorant the medicalprofession remains about this problem and that it took me nine years and many, manydifferent gynocologists to get a proper diagnosis. Thank you for your support!
CommentHELLO EVERYONE, I HAVE PLENTY TO SAY THAT I BELIEVE WILL HELP A MAJORITY OF YOUSUFFERING FROM VULVADYNIA. FIRST OF ALL FOR ALL OF YOU WHO DO NOT KNOW THE DIFFRENCEBETWEEN VULVADYNIA AND VESTIBULITIS I'LL TELL YOU THE DIFFERENCE; VULVADYNIA IS WHEN YOURVULVA TEARS ITSELF, WHEN YOU ARE VERY IRRITATED AND FEELS LIKE YOU ARE STINGING AND YOURVULVA IS VERY IRRITATED. VULVADYNIA IS PAIN ON THE EXTERNAL VAGINAL AREA(MEANING YOURVULVA). VESTIBULITIS IS THE PAIN THAT COMES FROM THE INTERNAL VULVA AREA(MEANING YOURVESTIBULE GLANDS). YOUR VESTIBULE GLAND AT TIMES BECOME INFLAMED AND SWOLEN AND THEN YOURVULVA BECOMES VERY RED AND LOOKS VERY IRRITATED. NOW THAT'S THE DIFFRENCE. PLEASE KEEP INMIND THAT NOT EVERYONE WHO HAS VULVADYNIA HAS VESTIBULITIS AS WELL. BUT IT IS A FACT THATYOU CAN HAVE BOTH AT THE SAME TIME.PLEASE LISTEN UP EVERYONE AS I TELL YOU MY STORY. I AM27 1/2 NOW AND I'VE BEEN DIAGNOSED WITH BOTH A YEAR AGO. I WENT TO A TOP NOTCH DOCTOR ATTHE MAYO CLINIC AND HE DIAGNOSED ME RIGHT AWAY. HE PUT ME ON A REGIMEN AND TOLD ME THETHINGS I NEEDED TO CHANGE. I CAN NO LONGER WASH MY HAIR IN THE TUB WHILE TAKING A SHOWER.I CAN NO LONGER WEAR TIGHT CLOTHES. I CAN NO LONGER WASH WITH ANY SOAP. I ONLY WASH WITH"DOVE" UNSCENTED MOISTURIZING CREAM AND THAT'S ONLY 3 TIMES A WEEK. AND THIS ISWHAT I'VE DISCOVERED ON MY OWN. "VANICREAM" IS WHAT WORKS FOR ME. IT IS"NOT" A STEROID CREAM NOR IS IT AN IRRITANT. IT IS A LIGHT MOISTERIZING CREAMFOR EXTREMELY SENSITIVE AND IRRITATED SKIN. I PUT IT ON EVERYNIGHT AFTER I TAKE A SHOWER.I PUT A THIN LAYER ON BEING THAT THAT YOU BE ENOUGH TO MOISTERIZE MY VULVA AND SOOTHE IT.AND LET ME TELL YOU GUYS, THIS HAS STOPPED THE TEARS, THE IRRITATION, THE BURNING ANDSTINGING FEELING. I HAVE BEEN USING THIS VANICREAM FOR 5 MONTHS NOW AND IT HAS DONE SOMESERIOUS WONDERS FOR ME. AND I AM VERY THANKFUL FOR THAT! NOW I LIVE IN ARIZONA AND WE HAVETARGET'S STORES OUT HERE. THAT IS WHERE I PURCHASE MINE FROM. IT'S HARD TO FIND AT ANYSTORE BUT YOUR BEST BET WOULD GO TO A PHARMACY AND ASK THE THEM IF THEY SELL IT. YOU DONOT NEED A PRESCRIPTION. BUT IT IS SOLD BEHIND THE COUNTERS AT THE PHARMACY. THERE ISVANICREAM AND VANILOTION. YOU WANT TO GET VANICREAM. I'VE NEVER USED THE LOTION BEFORE.BUT ANYWAYS I HOPE THIS HELPS ALL OF YOU SUFFERING WITH VULVADYNIA. IT HAS HELPED ME. NOWABOUT MY VERSTIBULITIS, I CAN'T GET RID OF THAT WITHOUT ANY MEDICATIONS. I REFUSE TO TAKEANY OF THOSE MEDICATIONS THAT ARE ANTIDEPRESANTS. THE SIDE EFFECTS JUST SCARES ME. BUTWHAT I HAVE DECIDED TO DO WAS TO HAVE THE SURGERY TO REMOVE MY INFECTED VESTIBULES. I'VEALREADY MADE MY APPOINTMENT AND I'M SCHEDULED FOR FEB 2ND. PLEASE PRAY FOR ME. I WILL POSTBACK AND INFORM YOU ALL ABOUT HOW IT WENT. BEST OF LUCK TO YOU ALL.
CommentHELLO EVERYONE, I HAVE PLENTY TO SAY THAT I BELIEVE WILL HELP A MAJORITY OF YOUSUFFERING FROM VULVADYNIA. FIRST OF ALL FOR ALL OF YOU WHO DO NOT KNOW THE DIFFRENCEBETWEEN VULVADYNIA AND VESTIBULITIS I'LL TELL YOU THE DIFFERENCE; VULVADYNIA IS WHEN YOURVULVA TEARS ITSELF, WHEN YOU ARE VERY IRRITATED AND FEELS LIKE YOU ARE STINGING AND YOURVULVA IS VERY IRRITATED. VULVADYNIA IS PAIN ON THE EXTERNAL VAGINAL AREA(MEANING YOURVULVA). VESTIBULITIS IS THE PAIN THAT COMES FROM THE INTERNAL VULVA AREA(MEANING YOURVESTIBULE GLANDS). YOUR VESTIBULE GLAND AT TIMES BECOME INFLAMED AND SWOLEN AND THEN YOURVULVA BECOMES VERY RED AND LOOKS VERY IRRITATED. NOW THAT'S THE DIFFRENCE. PLEASE KEEP INMIND THAT NOT EVERYONE WHO HAS VULVADYNIA HAS VESTIBULITIS AS WELL. BUT IT IS A FACT THATYOU CAN HAVE BOTH AT THE SAME TIME.PLEASE LISTEN UP EVERYONE AS I TELL YOU MY STORY. I AM27 1/2 NOW AND I'VE BEEN DIAGNOSED WITH BOTH A YEAR AGO. I WENT TO A TOP NOTCH DOCTOR ATTHE MAYO CLINIC AND HE DIAGNOSED ME RIGHT AWAY. HE PUT ME ON A REGIMEN AND TOLD ME THETHINGS I NEEDED TO CHANGE. I CAN NO LONGER WASH MY HAIR IN THE TUB WHILE TAKING A SHOWER.I CAN NO LONGER WEAR TIGHT CLOTHES. I CAN NO LONGER WASH WITH ANY SOAP. I ONLY WASH WITH"DOVE" UNSCENTED MOISTURIZING CREAM AND THAT'S ONLY 3 TIMES A WEEK. AND THIS ISWHAT I'VE DISCOVERED ON MY OWN. "VANICREAM" IS WHAT WORKS FOR ME. IT IS"NOT" A STEROID CREAM NOR IS IT AN IRRITANT. IT IS A LIGHT MOISTERIZING CREAMFOR EXTREMELY SENSITIVE AND IRRITATED SKIN. I PUT IT ON EVERYNIGHT AFTER I TAKE A SHOWER.I PUT A THIN LAYER ON BEING THAT THAT YOU BE ENOUGH TO MOISTERIZE MY VULVA AND SOOTHE IT.AND LET ME TELL YOU GUYS, THIS HAS STOPPED THE TEARS, THE IRRITATION, THE BURNING ANDSTINGING FEELING. I HAVE BEEN USING THIS VANICREAM FOR 5 MONTHS NOW AND IT HAS DONE SOMESERIOUS WONDERS FOR ME. AND I AM VERY THANKFUL FOR THAT! NOW I LIVE IN ARIZONA AND WE HAVETARGET'S STORES OUT HERE. THAT IS WHERE I PURCHASE MINE FROM. IT'S HARD TO FIND AT ANYSTORE BUT YOUR BEST BET WOULD GO TO A PHARMACY AND ASK THE THEM IF THEY SELL IT. YOU DONOT NEED A PRESCRIPTION. BUT IT IS SOLD BEHIND THE COUNTERS AT THE PHARMACY. THERE ISVANICREAM AND VANILOTION. YOU WANT TO GET VANICREAM. I'VE NEVER USED THE LOTION BEFORE.BUT ANYWAYS I HOPE THIS HELPS ALL OF YOU SUFFERING WITH VULVADYNIA. IT HAS HELPED ME. NOWABOUT MY VERSTIBULITIS, I CAN'T GET RID OF THAT WITHOUT ANY MEDICATIONS. I REFUSE TO TAKEANY OF THOSE MEDICATIONS THAT ARE ANTIDEPRESANTS. THE SIDE EFFECTS JUST SCARES ME. BUTWHAT I HAVE DECIDED TO DO WAS TO HAVE THE SURGERY TO REMOVE MY INFECTED VESTIBULES. I'VEALREADY MADE MY APPOINTMENT AND I'M SCHEDULED FOR FEB 2ND. PLEASE PRAY FOR ME. I WILL POSTBACK AND INFORM YOU ALL ABOUT HOW IT WENT. BEST OF LUCK TO YOU ALL.
CommentHELLO EVERYONE, I HAVE PLENTY TO SAY THAT I BELIEVE WILL HELP A MAJORITY OF YOUSUFFERING FROM VULVADYNIA. FIRST OF ALL FOR ALL OF YOU WHO DO NOT KNOW THE DIFFRENCEBETWEEN VULVADYNIA AND VESTIBULITIS I'LL TELL YOU THE DIFFERENCE; VULVADYNIA IS WHEN YOURVULVA TEARS ITSELF, WHEN YOU ARE VERY IRRITATED AND FEELS LIKE YOU ARE STINGING AND YOURVULVA IS VERY IRRITATED. VULVADYNIA IS PAIN ON THE EXTERNAL VAGINAL AREA(MEANING YOURVULVA). VESTIBULITIS IS THE PAIN THAT COMES FROM THE INTERNAL VULVA AREA(MEANING YOURVESTIBULE GLANDS). YOUR VESTIBULE GLAND AT TIMES BECOME INFLAMED AND SWOLEN AND THEN YOURVULVA BECOMES VERY RED AND LOOKS VERY IRRITATED. NOW THAT'S THE DIFFRENCE. PLEASE KEEP INMIND THAT NOT EVERYONE WHO HAS VULVADYNIA HAS VESTIBULITIS AS WELL. BUT IT IS A FACT THATYOU CAN HAVE BOTH AT THE SAME TIME.PLEASE LISTEN UP EVERYONE AS I TELL YOU MY STORY. I AM27 1/2 NOW AND I'VE BEEN DIAGNOSED WITH BOTH A YEAR AGO. I WENT TO A TOP NOTCH DOCTOR ATTHE MAYO CLINIC AND HE DIAGNOSED ME RIGHT AWAY. HE PUT ME ON A REGIMEN AND TOLD ME THETHINGS I NEEDED TO CHANGE. I CAN NO LONGER WASH MY HAIR IN THE TUB WHILE TAKING A SHOWER.I CAN NO LONGER WEAR TIGHT CLOTHES. I CAN NO LONGER WASH WITH ANY SOAP. I ONLY WASH WITH"DOVE" UNSCENTED MOISTURIZING CREAM AND THAT'S ONLY 3 TIMES A WEEK. AND THIS ISWHAT I'VE DISCOVERED ON MY OWN. "VANICREAM" IS WHAT WORKS FOR ME. IT IS"NOT" A STEROID CREAM NOR IS IT AN IRRITANT. IT IS A LIGHT MOISTERIZING CREAMFOR EXTREMELY SENSITIVE AND IRRITATED SKIN. I PUT IT ON EVERYNIGHT AFTER I TAKE A SHOWER.I PUT A THIN LAYER ON BEING THAT THAT YOU BE ENOUGH TO MOISTERIZE MY VULVA AND SOOTHE IT.AND LET ME TELL YOU GUYS, THIS HAS STOPPED THE TEARS, THE IRRITATION, THE BURNING ANDSTINGING FEELING. I HAVE BEEN USING THIS VANICREAM FOR 5 MONTHS NOW AND IT HAS DONE SOMESERIOUS WONDERS FOR ME. AND I AM VERY THANKFUL FOR THAT! NOW I LIVE IN ARIZONA AND WE HAVETARGET'S STORES OUT HERE. THAT IS WHERE I PURCHASE MINE FROM. IT'S HARD TO FIND AT ANYSTORE BUT YOUR BEST BET WOULD GO TO A PHARMACY AND ASK THE THEM IF THEY SELL IT. YOU DONOT NEED A PRESCRIPTION. BUT IT IS SOLD BEHIND THE COUNTERS AT THE PHARMACY. THERE ISVANICREAM AND VANILOTION. YOU WANT TO GET VANICREAM. I'VE NEVER USED THE LOTION BEFORE.BUT ANYWAYS I HOPE THIS HELPS ALL OF YOU SUFFERING WITH VULVADYNIA. IT HAS HELPED ME. NOWABOUT MY VERSTIBULITIS, I CAN'T GET RID OF THAT WITHOUT ANY MEDICATIONS. I REFUSE TO TAKEANY OF THOSE MEDICATIONS THAT ARE ANTIDEPRESANTS. THE SIDE EFFECTS JUST SCARES ME. BUTWHAT I HAVE DECIDED TO DO WAS TO HAVE THE SURGERY TO REMOVE MY INFECTED VESTIBULES. I'VEALREADY MADE MY APPOINTMENT AND I'M SCHEDULED FOR FEB 2ND. PLEASE PRAY FOR ME. I WILL POSTBACK AND INFORM YOU ALL ABOUT HOW IT WENT. BEST OF LUCK TO YOU ALL.
CommentI recently found this wonderful site while looking for information on my problem. Myheart goes out to you all. My problem seems small by comparison. About six months ago Iwent to my MD for what I thought was gardnerella (sp?). He said that's exactly what I hadand put me on some cream. It seemed to get better, but as soon as I was done with thecream, symptoms came back. So started the vicious cycle of going to the doctor almostevery week. Symptoms were severe burning in the labia area on both sides, but moreso onthe left. Every time I went back to the doc, he said it was yeast, gardnerella, or both!and prescribed different creams and/or pills. None worked. Finally saw a female GYN inNovember. She told me that I may not have had either yeast or gardnerella at all as my MDnever cultured the wet preps!! She thought my burning now was an allergic reaction to allthe creams I had been on. I could have cried! She instructed me to wear only 100% cottonunderwear, switch soaps, no fabric softener, etc (I'm sure you've all been that route).She also put me on a steroid cream called Clobetasol for a month. It seemed to worksomewhat. But now the burning is back and the Clobetasol only works temporarily so back Igo to the GYN who wants to take a biopsy of that area. Doesn't sound like fun. Tocomplicate matters, I have genital herpes also and have for about 12 years now. However,this burning is not that (tested negative). My symptoms are mainly burning on the labia.Intercourse is not painful (thank God), but the labia burning is worse after intercourse.Some days it's not that bad, others it's terrible. Wearing jeans is definitely out. Reading the past entries on this site has been VERY helpful. I too thought I was alonein this. Something very interesting - after reading some entries here, I started thinking.About the time all this started, I was and am still having some trouble with my back.Physical therapy hasn't helped. Could be related??? I think I will also make an appt. withthe chiropractor even though the thought of having my bones/joints cracked doesn't soundtoo appealing. Will let you know if it makes any difference. Sorry this got so long. Guess I needed to vent. Thanks, good luck to all and God bless!
CommentHi..This is for Rhonda who posted on 1/18 (and for anyone else who isinterested)...Just so you all know,Active Release Technique which can only be performed bya chiropractor who is certified in it; is not 'cracking of the bones'. This 'technique' isa hands on manual massage/ manuever/ elimination of any scar tissue which may beentrapping nerve(s) to the vulvar area. (ie; genitofemoral nerve, pudendal nerve...)Please read about Active Release Technique...for I am only a patient and really am notsure how to accurately REALLY DESCRIBE it. I don't know if I mentioned it on a post beforeor to an e-mail to one of you only; but please consider this just may be the cause ofthis...I know not all of us; but probably more of us than you think. It is so easy to get'caught up' in the GYN aspect of this; believe me I know from over 4 years of doing itmyself. Look beyond GYN...Come on. I hurt my hip - had no symptoms from the injury otherthan sore muscle. Then 5 months later I start to burn 'down there'...Who'd have thought?Obviously not many! Until now... I've been getting a lot of e-mails in response to this.Thank you for the support. Oh, and Dr. Glazer, don't get me wrong...Obviously yourbiofeedback is on the right track of treating this whole God Awful "THING"; Imean there is an OBVIOUS link between pelvic floor spasms and all of this...but the otherlink is the actual nerve for a lot of us. We need to treat/strengten the muscles and thenrelease these trapped nerves as well. This I believe you know. I just don't want you tothink I don't respect you and what you've done for all of us...But some of us need more.
CommentTo Barabara, who has been using all the topical steroids, Get yourself off all of these steroids and get yourself a new doctor. Heavy steroid useover a long period of time WILL THIN THE SKIN. In our situation, that means more pain andirritation. I had the same problem as you and took myself off of the steroids. My doctorat the Mayo clinic could still see the areas where the skin had thinned over a monthlater. Now, 4 months later, I still have v v. But I feel much better than I did while Iwas on the steroids. If it is uncomfortable right after you stop using the steroids, Isuggest applying Crisco and Vitamin E oil to your vulva. The Vitamin E helps to rebuildthe skin, and the Crisco helps with the dryness and burning. But most importantly, GETYOURSELF A NEW DOCTOR!! Doctors who aren't willing to try anything but steroids areclueless about this condition.
CommentI TOTALLY A GREE WITH RUTH. STEROID CREAMS ARE NOT GOOD FOR THE SKIN. IT WILL ONLYSOOTHE IT FOR 1 OR 2 MONTHS AND AFTER IT THINS OUT YOUR SKIN, THEN YOUR INNER SKIN GETSDAMAGED AND THEN THE PAIN REOCCURS. I'VE NEVER TRIED CRISCO OIL OR VITAMIN E. I'VE ONLYTRIED VANICREAM. IT IS MY SAVIOR. I APPLY A THIN AMOUNT INSIDE AND OUTSIDE OF MY VULVAEVERYDAY(OR NIGHT) AFTER TAKING A SHOWER. IT HAS NO DYE, NO LANOLINS. IT'S FOR IRRITATEDDRY SKIN. PLEASE EVERYONE TRY IT. IT HAS WORKED FOR ME FOR THE PAST 4-5 MONTHS.
Commentdoes someone have an answer to this question? why is it that woman suffer from thiscondition and as much as the women who have prayed for this to go away, why doesn't itjust go? why does god make us suffer like this without any mercy? why does everyone keepsaying, "god bless us all"? to me this is not a blessing. it seems as though hehas cursed as opposed to blessing us. please don't be upset with me. i just can'tunderstand how and why he allows this horrible thing take control over our lives and allit does is give us hell! please someone, answer my question. thank you
CommentTO LYNN: IS THE VANICREAM YOU USE THE LIGHT MOISTURIZING CREAM, OR THE VANICREAMLOTION? THANKS.
CommentTo TMD McPhee - Please excuse my ignorance on the chiropractor subject. I've never beento one - one of my friends calls his "the bone cracker" - hense my description.Given the "coincidence" of my back/neck pain happening at the same time as thisburning/itching, I think there could be something to this, which is why I have made anappt. with a chiropractor. Also - after having used a steroid cream (Clorbetasol) without success, I have to agreewith the people who say to get off of them. Thinning skin in that area can only makethings worse. After I see the GYN again, I think I will try the Vanicream. Wish meluck....
CommentI was fascinated to find this website. I am 42 years old, I am a nurse, and I havesuffered with vulvodynia and vestibulitis for nearly 8 years. I have been treated for"typical" and "atypical" yeast infections, I was on Elavil, Periactin,topical steriods of all types, Medrol Dospac, topical estrogen, topical interferon,subcinjection of steroids, laser vaporization, and finally mini-vulvectomy upon therecommendation of my GYN who had talked to the female Doctor in Oregon. The surgery wasn'thas bad as the laser treatment. I think it even helped a little As you all have mentioned,the flare ups are unbearable; both physically and emotionally. I feel very unfeminine andI don't feel like a good mother to my teenage daughter because I would rather be soakingin a tub of warm salt water than interacting with her.My husband is absolutley wonderfulto me, and on the rare occassions that we are intimate it is worth the wait. However, fora week or so after intercourse the pain and burning is awful. Then he feels bad, and I getdepressed again. I am reluctant to keep calling my GYN. He has told me on the last fewvisits that if I can pinpoint a certain area he will cut it out again. I am sure thatthere are many of you like me that are very tired of needles, exams, and creams. For thepast 2 months I have had terrible bladder urgency, and hematuria. I was referred to aurologist by my GYN and I was cystoscoped and found to have a negative exam. He stilltreated me as interstitial cystitis with DMSO instillations x 2, as a diagnosis ofexclusion rather than a proven disease. I am no better, and he said "some people justhave to live like this...: I don't think that is a viable option for me. I would like somehelp from anywhere, anything. Does the low oxalate diet work for many? I am more and moreconvinced that my 2 symptoms are related. I am nearly at my wits end with frustration. Ithas been a good catharsis to write this down. Only woman who have experienced thesesymptoms can fully appreciate the utter chaos that this causes to one's life and marriage.I live in the Upper Midwest, but I would travel anywhere. Thanks for"listening."
CommentHi Rhonda...I'm sorry if I sounded rude in any way - I didn't mean to! I just wanted to(and should have in my prior posts) specified that ART is a technique aside from'chiropractic adjustments' I guess is the operative word! Anyways, make sure the Chiro isin fact ceritified...and the best of luck to you. Where do you live? Do you have e-mail?If you'd like to let me know how it does go, please feel free to e-mail me. I'd like toask Dr. Gale (my chiro) if he knows this Dr. you do choose. They all seem to be prettyclose knit - and have regular seminars to converse about their 'subjects'...I know that I(unfortunately) am one of those rare and unique ones...so they think!! Good Luck!
CommentA Word on Steroids Okay, I hear A WHOLE LOT of negative things about steroid creams - enough that when mydoc suggested it, I balked. I was on a very mild (.25%) steroid cream for 8 weeks and itreduced my pain by 75%. The pain has not recurred at this level, and my skin was notdamaged. I saw my docter regularly during this time so that she could monitor my skincondition. I used only a small amount, and I tapered my use. When used with care, Ibelieve that steroid cream can help a great deal. Trust your own instincts and don't try atreatment that you don't feel comfortable with - but don't write cortisone off completely. In addition to cortisone, dietary modification and physical therapy helped me a lot. Ibegan these regimens about a month after stopping the cortisone treatment.
CommentHELLO. TO WHOMEVER ASKED ME THE QUESTION. I USE VANICREAM. I'VE NEVER TRIED THE LOTION.I CHOSE VANICREAM AND IT HAS WORKED FOR ME. IT'S MY SAVIOR. IT HAS DONE SOME SERIOUSWONDERS FOR ME AND I HOPE IT WILL DO THE SAME FOR YOU. AND YOU'RE VERY WELCOME. BEST OFLUCK TO YOU.
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CommentTHIS MESSAGE IS TO WHOMEVER ASKED ME ABOUT THE VANICREAM. I'M SORRY I DIDN'T SPECIFYWHICH CREAM I USE. I USE VANICREAM-A MOISTURIZING SKIN CREAM.
CommentTO WHOMEVER ASKED ME ABOUT VANICREAM. YES I USE THE VANICREAM MOISTURIZING SKIN CARE.I'VE NEVER TRIED THE LOTION. BUT THE CREAM WORKS JUST GREAT FOR ME.
CommentTO WHOMEVER ASKED ME ABOUT VANICREAM. YES I USE THE VANICREAM MOISTURIZING SKIN CARE.I'VE NEVER TRIED THE LOTION. BUT THE CREAM WORKS JUST GREAT FOR ME.
CommentTO ANONYMOUS: Well, I certainly don't claim to have all the answers as to why this has happened tous. But, I HAVE come to truly believe that everything in life happens for a reason.Sometimes you might figure out that reason; sometimes you might not. I won't sit here and say that I'm HAPPY that I have vulvodynia, because I'm certainlynot. BUT, you know how they say that something good comes from everything? Well, I alwaysthought that was really corny. But, I don't anymore. I've had some pretty low points in dealing with vulvodynia: In the beginning, goingfrom doctor to doctor, and having them tell me I was fine, even though I knew I mostcertainly was not. The torture of not having a name to give to this thing: wondering WHATIS WRONG WITH ME??? WHAT IF IT'S SOME NEW TERRIBLE DISEASE THAT THEY DON'T KNOW ABOUT??WHAT IF MY HUSBAND CAN GET IT???? I would lay in bed just crying myself to sleepeverynight, because I was in so much pain. I thought my sex life was definitely over. Iwondered if my marriage would survive this. I wondered: WHY DID THIS HAPPEN TO ME???? Iwas very angry; I was very scared. BUT, I can tell you that good HAS come from this (which I find as unbelieveable as youprobably do). I have learned to take better care of myself: I eat better, take vitamins,try to get more excercise. I have learned to research medical information on my own, so Ican be more educated when I speak to my doctors about things. I've discovered things likeaccupressure, which I used to think was "weird," but I now am truly thankfulthat I "discovered", as it's truly been of help to me. My husband and I have adefinite appreciation for sex, for sure. We don't "take it for granted" anymore.And, somehow, my marriage has not only survived this horror, but it's gotten stronger. Itruly am grateful for my husband, for he is a gem. He was with me all the way through thedarkest moments of despair for me. I love him with all my heart. And, finally, one of the biggest things I have learned from this is FAITH. Withoutfaith, I truly believe I wouldn't be where I am today. Please, please, please, don't EVER lose your faith. You must keep fighting to find helpwith this. Go through these guestbooks. There are so many women who have offeredsuggestions and told what's helped them in the hopes that it will help others. Get ideasand then talk to your doctor about it. Once I got rid of my yeast infection (which was one of those stubborn atypical sorts),while I didn't feel completely well, I felt much better. If you're not getting anywherewith your doctor, or if he or she is "blowing you off," MOVE ON! Find a NEWdoctor who will listen, who will take you seriously, and who is INFORMED regarding thiscondition. Implementing some of the other things (such as the calcium citrate supplement,and drinking lots and lots of water, for example), has helped me even more. Even though this experience has definitely been one of the worst in my life, I stillhave managed to grow from it. I wish the same for you. Please take care of yourself; there are so many others out here like you. And, we careabout you, even if we DON'T actually know you. You'll be in my thoughts.
CommentI have been visiting this site for a couple of months. My wife has suffered for over ayear with recurrent tears at the base of her vulva. Surgery to currect some internalproblems caused by three pregnancies and to form a new scar have not been successful. Wehave tried SBR-Lipocream to heal and protect the vulva. She said it made her feel wet anduncomfortable all the time, after two weeks we attempted sex and even though I was asgentle as I could be she immediately tore at the same spot. The steroid cream she has beenusing internally has not helped and I see her labia shrinking and adhering. Her Gyn. hasbeen in practice for over twenty five years and said he has never seen this before. I sawthe recent post in which the lady said Vanicream helped her , I'm tempted to buy it but atthe same time I know it contains polyethyene glycol monostearate. I want her to haverelief but not at the cost of putting harmful chemicals in her body. There must be areason for the vulva tearing, the tissue thinning out. I'm incouraging her to see anotherGyn. hopefully there will be more agressive research done. To all the male partners outthere remember there is fine line between helping and harassing. I try and catch myselfand think what if I had some problem? How often would I want my wife reminding me to seekhelp? Someone asked why do we "Women" say God Bless Us" when he has nothelped us? All I can offer is the thought of God and belief in God is like a lifeboat whenyou are surrounded by water in a stormy sea. We look beyond the earthly and put hope insomething we cannot see. Hope keeps us going, keeps us loving .I don't see God as a manbut rather as a belief. When I say God Bless all of you, I mean to say hope and patienceto you. Keep pushing your Doctors, there must be a better answer than anti-depressants andsteriod creams. Thankyou.
CommentFRANK: Did you notice the post from Lisa on 10/26? (She posts regarding prolonged steroiduse.) Don't know how long your wife has been on the steroid cream you mention, or when hertearing started. (Perhaps this is what's causing it on your wife????) It's something tothink about and talk to the doctor about. Here's a website I found: http://www.dermnet.org.nz/index.html How long has she been seeing her current doctor? Maybe she should try to find a newone?
CommentHi Lynn. I will soon be moving to the Scottsdale area, arout 10 minutes from the MayoClinic. Could you tell me the name of the doctor you are seeing there?
CommentThis is for Lynn. Thank you for describing the difference between vulvodynia andvestibulitis to me. The gyn. told me I had vestibulitis but after reading yourdescription, I'm not so sure. My symptoms are external burning and redness around theoutside of the entrance to the vagina. I don't have any tearing, though. Sex is painfulprimarily because of the friction and rubbing to that area during intercourse. Does thissound like one or the other to anyone? Also, do you only wash your whole body three times a week or is that just your vaginathat you only wash three times a week? You talk about taking a shower every night and thenapplying the vanicream, so I was a little confused. Thanks!!
CommentTo Bridget, Have you been tested for oxalate. The low oxalate diet helps some and forsome women calcium citrate plus this has done wonders for them. I unfortunately had areaction to citrate so just am trying th diet alone. But I was tested for oxalate and andI am high twice a day and let me tell you I can tell at the times it causes my vulvadynia.My derm also said to try vanicream like Lynn stated I have not as yet. Also he saidcetaphil cream was ok also. I am also from the Upper Midwest and I must say the doctors donot know much where I am. You sound as if you have given it your all hang in there. Alsothe the lady who wrote in when someone asked why would God give this to us. You wrote awonderful e mail. I have had this on and off for many years more than I care to rememberwhat can you do but go on.
CommentDear Mary, I have not been tested for oxalates. My gyn said he didn't think there wasmuch correlation.... I appreciate the feed back. I am going to get the calcium supplementthat many of the women have mentioned. It doesn't hurt for us to experiment on our own.Thanks for writing back. I have to say that my bladder symptoms are overwhelming atpresent. I am going to try and find a place to go as soon as possible. Any new info isgladly welcomed. Thanks, Bridget
CommentSomeone asked about my wife's Gyn and steriod cream use. Here goes, she has had thesame Gyn for about ten years. We have been together for twenty years and until last yearwe have made love between five and ten times a week with no discomfort. Last year , oneyear after stopping the " Pill " she started to develop a tear at the base ofher vagina. She had surgery to correct a rectocel and to form a new scar where the tearoccurs. Her Dr. has had her use Estrace estrogen cream since the surgery to strengthen hervagina. I believe the Estrace has caused her labia to atrophy or shrink. I definitelythink there is a relation between the tearing and the hormone levels. I have always beeninvolved with her health but it seems that unless you are a Dr. you cannot question theirmethods. I hope none of you ladies are offended by a man posting here. My wife just is notinto the internet and all it can offer. I think that knowledge is power and what betterway than to share on this topic. P.S. Someone thought the response about God was writtenby a woman, sorry I wrote it and I'm a guy.
Commenthello; I am just writing to find out if other people suffer from clitorism, which is alow grade arousal where the clitoris does not deflate even after many orgasms. I got thisproblem after I contracted reiters disease which is an autoimmune disease it causesconjunctivitis, arthritis, at first contact with an unknown virus you also get a fever anda bladder infection. I got it through a sexual contact but it took 6 weeks for thesymptoms to appear for six weeks i was fine healthy doing sports and then all of a suddenI got a fever, my eyes hurt I was baffled and the worst clitorism. Many would not evenknow this came from a sexual contact because its almost two months after the fact, it cancome from bad ffod too, I am wondering if other women got their symptoms weeks afterhaving intercourse with a new man. I heard from a doctor their might be other women thatsuffer clitorism I wish for them to email me. So far I have not talked to any other womenwith my condition, I know somewhere in the world someone has the same problem. Pleasecontact me, thanks ginny
CommentHELLO THESE 2 MESSAGES ARE FOR CONNIE AND ERIN. CONNIE, MY DOCTOR AT THE MAYO CLINIC'SNAME IS STUART FOWLER. THERE ARE 2 LOCATIONS IN SCOTTSDALE. IF YOU CALL EIGHTHER ONE,THEY'LL GIVE YOU THE NUMBER TO WHERE HE'S AT AND HOW YOU CAN MAKE AN APPOINTMENT WITHHIM.. HE'S REALLY A GOOD DOCTOR. ERIN, YES IT DEFINITELY SOUNDS LIKE YOU HAVEVESTIBULITIS. YOU HAVE THE SAME SYMPTOMS AS ME. YOUR VULVA TEARS WHEN YOU HAVE VULVADYNIA"NOT" VESTIBULITIS. I HOPE I DIDN'T CONFUSE YOU ON THE DIFFRENCES BETWEEN WHICHONE. BUT AGAIN I AGREE WITH YOU DOCTOR. AND JUST SO YOU'D KNOW, THE RED AND IRRITATED AREAAROUND YOUR VAGINA OPENING IS CALLED YOUR VESTIBULES. YOUR VESTIBULES ARE INFLAMED ANDYOUR TISSUES ARE DAMAGED. THAT'S WHY IT HURTS RIGHT THERE. YES I TAKE A SHOWER EVERYNIGHTWITH JUST PLAIN WATER. BUT 3 TIMES A WEEK, I USE DOVE "UNSCENTED FOR SENSITIVESKIN" SOAP. AND DON'T WORRY ABOUT THANKING ME. I WANT TO HELP ANY WAY I CAN. TAKECARE
CommentHELLO ALL, IT'S ME AGAIN. YOU ALL MIGHT WANT TO CHECK OUT THE WEBSITE FOR THEVANICREAM. IT IS WWW.PSICO.COM CHECK IT OUT AND CLICK ON VANICREAM AND LOTIONS. IT WILLTELL YOU HOW EFFECTIVE IT IS. IT EVEN SAYS HOW IT'S FOR RED IRRITATED SENSITIVE SKIN.PLEASE CHECK IT OUT. BYE NOW.
CommentThis is for Frank. After reading your message of 5 to 10 times a week, maybe you justused it too much! WOW!
CommentVery funny. I wasn't trying to brag, there have been weeks when those figures were highand weeks when they were low. I was just trying to establish that prior to last year wehad a very active sex life. I never caused my wife any pain, this illness has. Come on,put your efforts to finding the real cause and treatment. Anti-depressants and topicalcreams fall short of what the medical community is capable of. I may have a healthy libidoand I love my wife very much but aside from our immediate concerns is the future. We havedaughters and we do not want them to suffer with this . I'm glad I made someone laugh, nowlet's get serious.
CommentI was wondering where you can get the vannicream because i would like to try it. Is itin most drug stores or supermarkets?
CommentREACH ME FOR FRIENDSHIP. THANKS.
CommentHI ELIZIBETH, I AM GLAD THAT YOU ARE INTERESTED IN THE VANICREAM I SUGGESTED. IT HASDONE ME SERIOUS WONDERS AND I BELIEVE IT WILL DO THE SAME FOR YOU. BUT ANYWAYS, IT IS NOTFOUND IN MANY STORES. BUT I LIVE IN ARIZONA AND I PURCHASE MINE FROM "TARGET'S"STORE. YOU DO NOT NEED A PRESCRIPTION, BUT IT IS SOLD ONLY BEHIND THE PHARMACY'S DESK. SOYOU'LL HAVE TO HAVE THEM GIVE IT TO YOU. THERE IS A VANICREAM AND VANILOTION. I DON'T KNOWMUCH ABOUT THE LOTION CAUSE I'VE NEVER USED THAT BEFORE. BUT THE VANICREAM IS WHAT WORKSFOR ME. I PUT A THIN LAYER ON EVERYDAY AFTER GETTING OUT THE SHOWER. SOMETIMES, I'LL GETLAZY AND PUT IT ON EVERY OTHER DAY AND OF COURSE THAT'S FINE AS WELL. OH BY THE WAY, IDON'T KNOW IT YOU HAVE VULVADYNIA OR VESTIBULITIS. BUT THE CREAM IS FOR THE VULVADYNIA. ITWON'T DO ANYTHING FOR YOUR VESTIBULITIS EXCEPT FOR SOOTHE THE END NURVES ON YOURVESTIBULES WHEN THEY ARE BURNING. WELL GOOD LUCK TO YOU. BYE NOW
CommentTo Amy (1/11/01), I did write a lot about soy. I do believe that soy is a problem forme. I can't remember where all of my comments are in the guestbook, I've written a lot ofentries. I do believe that soy is something that has created my Vulvodynia. I do know(that with me) I seem to be reacting to soy or soy products. It doesn't matter if I eat itas so, or if I eat it in something. As soon as I eat it, I am irritated, swollen, and cannot stand my bottom within about a few hours. If I eat a little, I am okay, but once Icontinue eating soy or products, I build up a "soy problem". I get all of mysymptoms back. If I am moderate, I am fine. I mean moderate! I have to be very careful.When I eat natural, I am okay. I always notice this when I cut out produced foods. I eatnatural I am perfect again. Who knows? I just know, this works for me. I think with this,many people are looking too far into it. I think, yeah, it is somewhat of a new disorder,but why would that be? Maybe because we also eat new things. Just because someone saysthis food is good for you, is it? Think again! Money walks and bullshit talks! Soy, itmakes Americans rich! If the users used the good part of Soy we would be okay, but sciencehas drawn out the other parts of soy that aren't even used in other countries because theydon't think that it is safe. However, Americans eat it. I eat it, you eat it. IT is messedup. There is a debate about soy right now! If you look up the dangers of soy, you wouldsee that there is much to be questioned. Estrogen levels can be increased with soy. Mybody may not be used to that. Anyway, I am not a doctor nor a scientist, but check out theresearch! Soy is not always good to all people! It is not the best thing for everyone. I'msure there are health benefits to some people, but to me soy is poison to my body. My bodyhates soy, and if I eat it, Vulvodynia is sure to take my body over!
CommentTo all the people who live in the UK: They have a wonderful organisation there, theVulval Pain Society. Their web-page: www.vul-pain.dircon.co.uk/ There should be a listavailable which tells you about the vulvar specialists in your area, and I know that theyhave a special hospital for vulvar problems. I'm a member although I live in Germany. Thiswas my first contact with people who know something about vulvodynia. They have a verynice newsletter, too. I hope this information helps some of you, take care, Martina.
CommentI have had all sorts of problems over the past 15 years at least-- more withvestibulitis than vulvadynia, . I am so happy to see this set of conditions beingrecognized by doctors, finally!! So much has changed. Lately I had a new bout, and amdoing research on the Internet. I keep asking myself, "Why would aninfection/irritated area take so long to heal?" Obviously, one factor is all themis-diagnoses I've (and many/most of you) have had to endure along with mis-treatment.Yet, I still think there's more to it. Sometimes, I get a sore throat or a cold that justlingers and lingers. So this time, along with working with a gynocologist who recognizesthis problem, I'm trying to do the really basic things like get more rest, since sleep canplay such a huge role in the immune system functioning well. I'm also thinking abouthaving some craniosacral therapy (CST) see www.upledger.com because I've had so manytraumas to my body, I think maybe the CST could act like a good housecleaning, or resetbutton to help my body move out of the over-irritated groove. I'm wondering if anyone elsehas tried this kind of wholositic approach along with and in support of the more specificremedies for the condition itself? If so, what modalities have worked the best for you?
CommentTo Lynn, Could you not write in all caps? You have a lot of good information in yourmessages, but they're hard to read when all of the letters are capital. I don't mean forthis to be a mean comment.
CommentEXCUSE ME MARY BUT I TYPE IN CAPS CAUSE THAT'S MY PREFERENCE. AS BIG AS THE LETTERSARE, YOU SHOULD HAVE NO PROBLEM WITH READING THE MESSAGES. PLEASE DON'T TRIP WITH ME! I'MREALLY NOT THE ONE!
CommentHas anyone on the list seen Dr. Julius Metts of Davis, California? I'm about to make anappointment and just wondered if there was any feedback. Feel free to email me privately.
CommentI just want to know are there any other african americans out there who are sufferingwith this vulvadynia crap! I hear that this is a caucacian illness. I don't understand howI got it!
CommentHi Mary, I apologize for getting upset with you earlier. I will try not to write incaps anymore. Are there anyone of you that reside here in Arizona? I was just wondering.If so, have you heard of Dr Hatch? He's going to perform the surgery on me and I just hopehe's as good as he says he is. Well let me know if you're out there. Thanks!
CommentTo Lynn: I've only seen one other entry in the earlier guest books where the personidentified herself as African American. I've always been told that the lighter the skin,the more susceptible it is to irritation, allergy, sun damage, etc. That may be whyvulvodynia is considered a "Caucasian" disease. However, if the root cause isnerve damage or weak pelvic floor muscles, then I would think skin pigmentation wouldn'tmake much difference as to susceptibility.
CommentI don't know where to begin! I am 32 years old and have been dating the same great guysince March of 1996. We got married in Oct. of 1999. I started having vaginal problems inMay of 1996. Before that I had a great sex life and enjoyed life. I was taking anantibiotic to clear up a cough and 10 days later I developed what I thought was a yeastinfection. I bought Monistat and tried that and the syptoms remained (burning, soreness).I went to a OB and she diagnosed me with a bacterial infection and prescribed anantibacterial creme. It didn't get better and infact I got a yeast infection from thecremes. I went back in and she found yeast and I continued to take cremes and pills foryeast and was finding no relief. My symptoms were burning, rawness, soreness of thevaginal opening area. I don't think there was any discharge or redness. I was tested forSTD's, HIV and diabetes all negative. Since that time I have had a biopsy which didn'tshow much, had pulse dye laser sugery, tried biofeedback, wear only cotton underwear,don't wear any tight clothing and take Calcium Citrate. Until about a year ago I wastaking Zoloft because I was so depressed about my condition and what it had done to my sexlife. I was also taking Noratryptaline (sp?) for the pain. Since I got married we havebeen trying to concieve (1 yr and 2 months) so we have been having sex and it is alwayspainful for me. I use Astroglide and it does really help. I don't remember when exactly(probably about 3 years ago) I started getting a red bump or two on my rectum about everyone or two months. I thought they were hemorrhoids and they went away in about 3-5 days. Iasked my GP and OB about them and they agreed with my diagnosis. In Nov of 2000 one of thebumps tested positive for Herpes. Needless to say, I was in shock. I have had herpes foryears. I started taking Valtrex 500mg a day and have not had a herpes outbreak since andbelieve it or not the pain during intercourse was getting better. Things were looking up.Then around Christmas I started having a little vaginal discomfort (burning and soreness)and went to my OB on Jan 10 and she said I had bacterial vaginosis. She prescribed Cleocincreme for 7 nights. Still burning and sore. She then prescribed Metrogel .75% for 5nights. I just finished this last night and I swear I now have a yeast infection. I don'treally itch but have a thick white discharge and the burning. I went to see my OByesterday and she didn't even look at my vagina or do any tests. I think she might be fedup with me. My big fear is this whole NIGHTMARE is going to start over again. I have anstanding prescription for Dyflucan. I really think I have either a bacterial or yeastinfection right now because of the discharge and buring. What should I do??? Pleasesomeone help me. Women who have been in our boat understand that it doesn't take much tobring back all of the fears and confusion! Thanks to anyone who might be able to help me.Tracy
CommentI started out looking for information for my friend on lichen schlerosis, and foundthis web site. So many of you have the symptoms I had for several years before I found awonderful book by Dr. William Crook; The yeast connection. He has also written"Chronic Fatigue and the yeast connection." I had all the burning and itchingand inflammation so many of you describe,rectally, vulvar area, drying with a hair dryer,every possible cream, powder, and gel. I went for so many bladder infection tests andyeast infection tests, that they didn't want me to come in anymore because they thought Iwas just a hypochondriac. I was in abject misery and so I thought that I would share whatcured me in the hopes that it will help even one of you. I went to the extreme of having ahysterectomy so that I would not have to go through another period, which is when mysymptoms were the worst. It is true that diflucan kills yeast, but if you are like I am, Icould not take it on a long term basis. So I requested my ob/gyn prescribe the oldmedicine for me which is "Nystatin," as Dr. Crook described it as a remedy inhis books. I read in one post that someone had tried the cream, but it hadn't worked. Itook tablets. My gyn. didn't know how to prescribe it, so I worked with the dosage andtook 4 pills a day, 2 in morning, and 2 in evening for 6 months, then 1 in morning and 1in evening for six more months, and then I have not had to take them since. What hadhappened to me was yeast in my blood, yeast in my g.i. tract yeast everywhere!!! There wasmold in my basement, and it added to the yeast load by my breathing in the air that itcontaminated. I cleaned it thoroughly and dried out the basement as well. I have been freeof all symptoms for over 5 years, and my life has returned to normal. There are some foodsthat trigger symptoms, but not the actual syndrome for me, and I avoid them like theplague. I never want to itch or burn again! My trigger foods are soft drinks (somechemical used in their processing) instant coffee, and fresh oranges or juice. I hope thishelps some of you; I will be praying for you all! Dianne
CommentI started out looking for information for my friend on lichen schlerosis, and foundthis web site. So many of you have the symptoms I had for several years before I found awonderful book by Dr. William Crook; The yeast connection. He has also written"Chronic Fatigue and the yeast connection." I had all the burning and itchingand inflammation so many of you describe,rectally, vulvar area, drying with a hair dryer,every possible cream, powder, and gel. I went for so many bladder infection tests andyeast infection tests, that they didn't want me to come in anymore because they thought Iwas just a hypochondriac. I was in abject misery and so I thought that I would share whatcured me in the hopes that it will help even one of you. I went to the extreme of having ahysterectomy so that I would not have to go through another period, which is when mysymptoms were the worst. It is true that diflucan kills yeast, but if you are like I am, Icould not take it on a long term basis. So I requested my ob/gyn prescribe the oldmedicine for me which is "Nystatin," as Dr. Crook described it as a remedy inhis books. I read in one post that someone had tried the cream, but it hadn't worked. Itook tablets. My gyn. didn't know how to prescribe it, so I worked with the dosage andtook 4 pills a day, 2 in morning, and 2 in evening for 6 months, then 1 in morning and 1in evening for six more months, and then I have not had to take them since. What hadhappened to me was yeast in my blood, yeast in my g.i. tract yeast everywhere!!! There wasmold in my basement, and it added to the yeast load by my breathing in the air that itcontaminated. I cleaned it thoroughly and dried out the basement as well. I have been freeof all symptoms for over 5 years, and my life has returned to normal. There are some foodsthat trigger symptoms, but not the actual syndrome for me, and I avoid them like theplague. I never want to itch or burn again! My trigger foods are soft drinks (somechemical used in their processing) instant coffee, and fresh oranges or juice. I hope thishelps some of you; I will be praying for you all! Dianne
CommentHi, What a relief it is to know that I am not alone!! Thanks for this site and the supportit offers!!! I experience extreme pain at the base of my vaginal opening during sex. After sex, thesweeling, redness and general raw feeling can persist for up to two days. Otherwise myvulvar pain is more off a dull raw/dry feeling which is worse often after my period andexcersize (sweat). My doctor (not a vulvar specialist)does not think it is vestibulitis, since I did notrespond to the qtip test. Is he right or could I have vestibulitis with only the abovementioned symptoms??? So far I have tried physiotherapy (but my therapist was not knowlegeable in the area ofvulvar pain), been prescribed steroid creams and told to use milder soaps ect. No real solutions yet... but I am hopeful, and I will keep trying. The crazy thing isthat my fiance is still willing to marry me despite my vulvodynia and the fact that theremay be no cure. Does anyone know of a vulvar specialist in the vancouver area? Please email me if youdo. Thasks for listening and good luck finding a solution! Brenda :)
CommentHi my fellow sufferers I have not posted here for about 1 year. I was just put on somenew medication ( Nortriptyline) and was wondering if any of you who have taken this coulde-mail me with the side effects. Is weight gain a side effect? I was on Desiprimine in thepast and it did not help me with the constant burning. Any info on this medication will bevery appreciated. Thanks, Rosanna
CommentHello. These two messages are for Tracy and Brenda: Tracy, I strongly belive that youhave vulvadynia and have gotton vestibulitis also as a result. I suggest that you chill onthe doctors for a while and stop waisting your money. They are not helping you any byprescribing needless medications. You have gone through all what I've gone through atfirst. What I would say to you is to "PLEASE" go to your nearest pharmacy andpurchase some 'VANICREAM" moisterizer and put it down on your vulva internally andexternally everyday after you get out the shower. And please don't wash up with any kindof soap for a few weeks until you feel better. And I don't know what to tell you about thevestibulitis. I don't have an answer for that. I'm going to have surgery in 1 1/2 weeksand I just hope that gets rid of my pain. Brenda, I offer you the same advice. And yes itdoes sound like you have vestibulitis. But it's strange that you did not respond to theqtip test. But your other symptons(burning and rawness near the vagina opening)sounds justlike vestibulitis to me.
CommentDIANE: Regarding the Nystatin tablets that you were on: do you remember how many milligramseach tablet was? Also, did you have to do the "anti-sugar/anti-yeast" diet, thatbasically eliminates a WHOLE bunch of foods from the "acceptable food " list?And, finally, did you get of the "die-off" symptoms that people talk about? Thanks!
CommentHi KR, Thanks for the message. Are you african american as well? I am but I'm not evenlight skinned. I'm brown complected.
CommentDear Deborah, The nystatin tablets are not listed as miligrams, but units. The tablets are called"Nystatin Tablets, USP 500,000 units (oral). I copied this off the label. My pharmacyhad to order them for me because they are no longer kept in stock. As for the diet, I started with the total elimination diet, because I was desperate andwilling to try anything. However, I don't remember it being very long at all (days?)before I knew EXACTLY what foods were causing my distress. I am not familiar with the"die off" symptoms. I don't remember anything bad about the medicine or thefood, and am not sure which you are referring to. The medicine is a natural molddiscovered by two researchers in NY, and did not trigger any body reaction like allergy orsickness.
CommentTo Lynn: I am Caucasian. I have had this disease for a little over 3 years now. As foryour question about how you got this disease -- that is the million dollar question formost of us. As you can see from all the guest book entries, there are many differenttheories on what's causing this awful disorder. Some of the most common ideas are weakpelvic floor muscles, nerve damage, contact allergy, food allergy, STDs, yeast -- or mypersonal favorite, that many of us may have an as yet unidentified bacterial infection --similar to the fact that for years doctors thought ulcers were caused from stress and nowwe know that many are caused by bacteria. Who knows?? My personal story started out likeso many others -- I was taking antibiotics to prevent UTI, when I stopped taking them Ideveloped vaginal irritation that I thought must be a yeast infection, I used an OTC yeastmedication, and it went downhill from there -- fast and furious. Perhaps one day we willhave our answers. Until then it seems the best we can do is try to manage our symptoms.That's why I am so thankful for this website. The encouragement we receive from oneanother helps make the suffering just a little bit easier, and a lot of the advice fromthe other ladies is good advice and really does help alleviate the symptoms.
CommentI've suffered greatly also with this condition. I'll try to keep it short so I won'tshare everything. I've fought with various, numerous vaginal infections and symptoms. Wentover a year with no relations with my husband. Read, and read and read ANY info. I couldfind leading to at least a minimal higher quality of life and FINALLY, a Dr. prescribedthe PREMARIN Estrogren cream and it WORKED (for me)! I insert vaginally (2 gms) only oncea week and then topically (as much as you need to cover the affected area- say the size ofdime or so) twice a day every day. I will admit, initially I could NOT really rub it indue to the discomfort with any touch so I would put a "glob" there and sort ofpush the surrounding skin around the glob as best I could. You will experience itchingmaybe a week or two after onset of use(similar to yeast infection) for a week or 2 butunless your are certain it is a yeast infection, it will pass. This is the healing processbeginning just like a scrape itches as it heals. I have probably 70-80% less painfulperiods (still varies some) and relatively 99% pain-free relations with my husband forabout 2-3 weeks of the month!!!! (the biggest and most important improvement for amarriage). I'm also taking Pro-Biotics acidophillus (dairy-free) supplements (14 billionlive "good" bacteria) twice a day. This is the strongest bacteria allowed. Itassists with stabilization of the vaginal flora (which may help ward off BV's (bacterialvaginal infections). Also, a low oxalate diet may assist with your healing. Above all, theLord's comfort (thru Jesus) with prayer and patience have been my true"lifesavers" because during our darkest moments there is no other comfort butHIM. Don't give up and Praise God.
CommentHello Ladies, The last time I commented on this site was around June 00 at which time I had commencedtaking an antidepressant called Aropax (available here in Australia). At the time I felt Iwas only getting a small amount of relief, but after four months I noticed a very bigimprovement. I had read how antidepressants could help V V sufferers and I had also seenone ladies comment on this site as to how they had helped her and she was pain free. Sometimes you only need to be on them for six months and this allows the overactivenervous system in the vulva area to settle down, and then you may not need to take themany more. I gradually weaned myself off them after five months but once I got down to thedose of a quarter tablet every second day my symptoms started to return. I increased thedose back up to half a tablet a day and within a few days the symptoms had gone. I have now been taking them for a total of 7 months, and all the pain, swelling,tightness and redness has totally gone for the last two months. As far as I am aware, the antidepressant has to contain a "selective serotoninreuptake inhibitor", which in the case of Aropax is called paroxetine. From what Iunderstand, this chemical helps to reduce the amount of seratonin produced by overactivenerves in the vulva area which in turn inhibits the pain signal being sent to the brain.The overactive nerves become relaxed and then muscles relax, and eventually everythingbecomes normal again. The only side effects I have suffered so far is a weight gain of 2kgs, slightconstipation as I think the muscles around or in the intestinal area have relaxed too, anda tiny bit of fluid retention in the ankles by the end of the day (although we are havinga stinking hot summer over here at the moment which doesn't help). I will be seeing my doctor again next month to see if staying on them forever is anoption as they have certainly helped me 100%. If you haven't tried antidepressants yet, I'd seriously give them consideration. Regards, Di
CommentHello, I was very pleased with my appointment with Doctor Radke in New York City. Ispent over two hours in her office. Dr. Glazer referred her to me, he was actually thereand I got to say hello to him. Anyway I went in for a condition of clitorism due toreiters disease, continual clitoral erection. Men with Reiters tend to get Priapism,continual penal erection even after orgasm. Well I suffer from this but the femaleversion. I have beeen dealing with this for years, Anyway she put her gloved finger insideand pressed different glands no other gyn had done this. Nothing hurt and I thought myparaurethral glands were infected it turns out I have female prostatis, there is a groupof glands that would have been a prostate if I were born a boy. I screamed out in pain,and I felt like I needed the bathroom to urinate. It turns out I also have a vibratingurethra where the urethra enters the bladder it is inflamed. This causes the brain tothink I need to stay erect even after orgasm, because the same nerves are connected. thatsit write ginnyvaet@yahoo.com
CommentI was wondering if anyone got acupuncture where the acupuncturist put the needlesdirectly in the vagina? Did anyone have any luck with that? Thanks. Feel free to e-mail me privately
CommentI was also wondering if anyone got a vulvodynia flare-up from getting an orgasm withourpenile contact? Feel free to e-mail me privately. Jen
CommentThis is in reply to Jennifer (1/13),Melissa (1/15),Marilyn (1/16), and Lynn (1/23): Jennifer: Your question about long term bacterial infection having an adverse effect onthe fascial system in the form of scarring, in my opinion, go without question. If youthink of any type of infection as MICRO-trauma to the soft tissue, the body fights traumaand repairs itself by laying down layers of scar tissue. That being said, infections caneither be the cause of physiological disorders, or a resultant symptoms due to some othercause. It is generally understood and accepted that continued use of antibiotics andsteroidal use tend to exacerbate the initial problems primarily due to the fact that theydestroy the body's own natural defense mechanisms, manifested by the need for continueduse of stronger and stronger dosages and drugs. A fundamental shift would come with the eliminations of caffinated beverages,elimination of artificial sweeteners, instead opting for copious amounts of water intaketo flush toxins out of the body, keeping the vulva clean and using a high quality aloevera gel (Aloe Vera 80 by Naturade is one of the best) to keep the tissues moisturized andhealthy, maintaining a healthy diet rich in vegetables and pastas, and light to moderateamounts of exercise. You will find that Echinacea and Goldenseal extracts and supplementsgreatly enhance the body's immune system naturally, and that dialy use of colloidal silvercan have very positive affects too. An excellent online source for quality colloidalsilver (with proceeds going to help combat the epidemic proportions of aids in Africa) is Melissa: your question is a good one, and may I first say that as with anything you putin your body, you should make all attempts to educate yourself on the cautions as well asbenefits. That being said, the following information is borrowed from a wonderful book Iwould suggest everyone get, "Prescription for Nutritional Healing" by Balch& Balch, ISBN:0895297272. Before I get to the Calcium and Vit D, there is a very interesting comment made in thissame book as to the dangers and side effects of taking Aspartame products, primarily dueto the synthetic amino acid phenylalanine and aspartic acid not being metabolized in thebody in the same way that their natural counterparts are. Consumption of aspartame insodas, e.g., appears to cause a flooding of the amino acids in the bloodstream - a promptrise that does not occur oafter the ingestion of dietary protein. This rise, it isbelieved, may cause problems. Methanol, the third ingredient in aspartame, is known to bepoisonous even when consumed in modest amount. Disorders caused by toxic levels ofmethanol include blindness, brain swelling, and inflammation of the pancreas and heartmuscle. According to "Aspartame (Nutrasweet): Is It Safe? by H.J. Roberts, reportedreaction include headaches, mood swings, changes in vision, nausea and diarrhea, sleepdisorders, memory loss and confusion, and even convulsions. Aspartame appears to beespecially dangerous for children. Needless to say, if you ingest aspartame on a regularbasis, it would be worthwhile going all natural, besides, the body uses the natural sugarsin many ways that are not available through artificial sweeteners. And it goes withoutsaying that a continuous intake of water is the BEST thing we can do for our bodies. Now, Calcium: As we all know is vital for the formation of strong bones and teeth andfor the maintenance of healthy gums. It is also important in the maintenance of a regularheartbeat and the transmission of nerve impulses. It lowers cholesterol levels and helpsprevent cardiovascular disease. It is needed for muscular growth adn contraction, and forthe prevention of muscle cramps. BTW, women lose an enormous amount of calcium throughtheir menses. Normal dosages for women 35+ is 500mg 3x/day. Calcium is also essential inblood clotting adn helps prevent cancer. Calcium protects the bones and teeth from lead byinhibiting absorption of this toxic metal. Calcium deficiency can lead to the followingproblems: aching joints, brittle nails, eczema, elevated blood cholesterol, heartpalpitations, hypertension, insomnia, muscle cramps, nervousness, numbness in the armsand/or legs, rheumatoid arthritis, and tooth decay. Deficiecies are also associated withcognitive impairment, convulsions, depressions, delusions, and hyperactivity. Antacidssuch as Tums are not recommended as a source of calcium because if taken in sufficientquantities, they also neutralize the sotmach acid needed for the calcium absorption.Taking calcium with iron reduces the efect of both minerals. Too much calcium caninterfiere with absorption of zinc, and excess zinc can interfere with calcium absorption.A hair analysis can determine the levels of these minerals. Cautions: Calcium mayinterfere with Verapamil, a calcium channel blocker sometimes prescribed for heartproblems and high blood pressure. Calcium supplements should not be taken by persons witha history of kidney stones or kidney disease. Vitamin D: A fat-soluable vitamin, required for the absorption adn utilzation ofcalcium and phosphorus by the intestinal tract. It is necessary for growth, and especiallyimportant for the normal growth and development of bones and teeth in children. Itprotects against muscle weakness and is involved in regulation of the heartbeat. It isalso important int the prevention and treatment of osteoporosis and hypocalcemia, enhancesimmunity, and is necessary for thyroid function and normal blood clotting. The form of VitD that we get from food or supplements is not fully active. It requires conversion by theliver, adn then by the kidneys, before it becomes fully active. THis is why people withliver or kidney disorders are at a higher risk for osteoporosis. When the skin is exposedto the sun's ultraviolet rays, a cholesterol compound in the skin is transformed into aprecursor of vitamin D. Intestinal disorders and gallbladder malfunction interfere withthe absorption of vitamin D. Some cholesterol-lowering drugs, antacids, mineral oil, andsteroid hormones also interfere with absorption. Cautions: Do not take vitamin D withoutcalcium. Toxicity may result from taking amounts over 65,000 IU's over a period of years. Marilyn: I'm DELIGHTED to hear that you've found the Myofascial Release modality ofbodywork as effective as you have. Do keep us posted with how your subsequent sessions go,and if you'd care to share my email address with your therapist, have them contact me foradditional input. This underscores my original post and theory that a large number of youladies suffering from this terrible condition could (if you think hard enough) probablyidentify some past occurrence of an injury that you have sustained to your tailbone, lowback, or sacral area (between your hip bones in the back), which could today becompromising the Pudendal nerve which innervates the whole vulvar area and rectum. Amention was made by someone earlier about the glenofemoral nerve, the correct name in factis the genitofemoral nerve, which is primarily responsible for innervating the maletestes, and personally have a hard time seeing how this nerve, which at best wouldinnervate the anterior pubic area could have much influence over the symptoms typicallyexperience by vulvOdynia sufferers. However, if relief was found by working the L1-L2origins of this nerve, GREAT! I would, however, concentrate my focus on the Pudendal nervewith it's origins at S2-S4. Lynn: Thank you for taking your capslock off. Your posts were difficult to read,especially the longer ones. It is worthwhile to note, that in the internet world andespecially venues such as this, that it is generally accepted that cyberspace"netiquette" recognizes all caps as SHOUTING, as if you were mad at somebody,which we know to not be the case. And just to be safe, the word is vulvOdynia, notvulvadynia. The english language is great for tripping people up isn't it? While the areain question IS the vulva, when you put the "conditional" extention on it, the Areverts to an O. You said you were having surgery? Pray tell what are they going to do toyou? If you are near Tempe, I know an absolutely wonderful lady who is a former nurse andnow a licensed massage therapist named Kathy Monkman who I think would be able to possiblyprevent this invasive surgery. You should know that *anytime* surgery is performed, youare inviting a whole NEW list of possible conditions to develop, and I would hate to seethat. Kathy's phone number is 480-968-4202, and you can visit her website at Remember ladies that you possess within yourselves the power and strength to overcomethis. You were not born with this condition, it developed as a result of other outsideinfluences. Look deep within you soul and continue to draw on your strength, YOU WILL BEATTHIS!!! God Bless you all!
CommentThank you, Chuck, for your interesting and informative post! I appreciate yourresearch. It was interesting that you noted that gallbladder problems can inhibit the absorptionof Vitamin D. I no longer have a gallbladder. Does this mean I can take as many of thoselittle miracle Citracals as I want? :)
CommentI've been having vulvar pain (mild to moderate and pretty much only during/after sex orif I wear tight pants) on & off for months and consistently for over a month. Whilemine is not a severe case, I thought I'd share what's helping me: I went to my gynocologist three days ago. She had put me on Nizoral cream a few weeksago (antifungal/steroid cream), thinking my irritation was a yeast infection of the skin.It didn't work at all. By the time I went back I'd found this website & read up onvulvodynia. I'd gotten valuable info from this site & from nva.com and printed out abunch of it. Thankfully, when I talked to her about vulvodynia she was very familiar withthe condition & with treatments. I mentioned to her a couple treatments I'd read that sounded promising--estrogen cream& tricyclic antidepressants. She said she prefers the newer antidepressants becausethey have fewer side effects. She gave me Serzone (antidepressant) & Estrace (estrogencream.) Actually, she also put me on Estrace pills to stop breakthrough bleeding due to mebirth control shots, so who knows if they may also be contributing to me feeling better,though prescribed for a different reason. Anyway, my husband and I had sex last night, and the pain is almost completely gone, soI have high hopes for continual improvement. It's hard to tell what the improvement is dueto, so I think if it continues I may wean myself off the Serzone to see if just theestrogen works. One other thing--if you have a supportive husband, you might ask him to come to adoctor's appointment with you. I brought my husband along this time, and it reallyhelped--gave me moral support and made me feel like he's more connected with solving thisproblem that affects him so much. (He did think it was kind of weird when the doctor said,"Ooh, do you want to see her cervix? Look right there!" But despite theunattractive position he saw me in, it was definitely worth it to have him there!) I hope this helps others.
CommentThis is for Chuck... I hesitate in responding to one of your comments; only for fear of sounding rude and/orunappreciative of all of your recent input on this website... After 7 years ofbattling/struggling, myself, with vulvar burning and all the so-called experts/Dr's/NursePractitioners in the area who 'came with it', I can be cynical and critical at times;although I try my hardest not to be. Nobody knows what we have been through...not onlyphysically, but mentally as well. Only we who suffer can know the depth of this kind ofpain - and the different 'paths' it creates in affecting our lives! I am the one who hasposted regarding genitofemoral (I did spell it incorrectly before) and pudendal nerveentrappment...I have been seeing a chiropractor who performs Active Release Technique onme where I have adhesions...all in my front lower abdomenal to hip flexor area and downinto my groin. Now please bear with me; for I am still learning and may sound naive as tohow to explain this...but from what I understand it is this area (mass of scarring) thatis specifically entrapping the (my) genitofemoral nerve. (I also have tightness, more sothan scarring, in my buttox area (same side) which causes 'problems' with my Pudendalnerve. When I read your past post regarding your feelings on this (specifically thegenitofemoral nerve); how you personally have a hard time seeing how this nerve (thegenitofemoral)could have much influence over our (my) symptoms of vulvodynia, I took itpersonally! Yes, you 'covered yourself' in letting us (me) know that if relief is found,that you think it's great...Well, at the risk of being sarcastic, I do thankyou Chuck;that you think it's great (even though you don't see how it could be the cause). You'veoffered a lot of good advice in your posts and seem to be sincere as well...That's whythis comment 'surprised' me and I guess rubbed me the wrong way. We are real people withreal feelings...After years of getting nowhere with misdiagnosis, unneccessary drugs andtreatment..never mind the continuous thoughts through it all that I was either going todie of some unknown disease of unknown cause - or- live with this forever; I can nowfinally understand - because of my Doctor - what IS going on in my body. I am asking youonly this..to please keep your personal feelings to yourself on how something will and/orwon't work with the pain we (I) feel. I know myself that I can come to this site and finda 'warped' sense of comfort in knowing what others are going through and that I'm notalone...Because I do KNOW what and how we all feel...You can't possibly know. But eventhough I can say that I do know how we are feeling I would never tell someone that ishaving success in a certain form of treatment that I just dont see how it could beworking! So, how can you? It is all the health professionals - who, yes, are only human -who got a lot of us 'trapped' and stuck in this God awful cycle of pain to begin with - bytheir not understanding this pain! (Do you know how many topicals (antibiotic andhormonal, I put down there all for nothing? Who knows what exterior damage that hascaused.) I'm sorry..I am swaying from my (only) point. That I am feeling better because ofthe release of my genitofemoral nerve...That is a fact..And that at this point in my lifeI do not need to know that YOU have a hard time understanding this and would concentrateYOUR focus elsewhere. Please don't ask me not to read these posts if I don't wish to'hear' certain things...This is the only time in all these years that I have ever comeacross this way on this board; and I'm not going to stop visiting because of this. May Iadd that because you are so interested in Vulvodynia, I would suggest that maybe you lookinto WHY the genitofemoral nerve does have an influence in (my) vulvodynia. And then maybeoffer some knowledgable input on the theory...which I personally would love to read. I'msorry if I've offended you in any way...This has been in my life for way too long not tohave some serious 'issues'. Thank you for your interest in all of our situations.
CommentTHIS IS MY FIRST TIME ON THIS WEB SITE.IVE BEEN READING EVERYONES STORIES AND I THINKTHIS IS WHAT I HAVE.I HAVE BEEN TO 3 DOCTORS AND BEEN TESTED FOR UTI,YEAST INFECTIONS,STDAND EVERYTHING IS NEGATIVE.IVE EVEN HAD SONOGRAMS AND ULTRASOUNDS OF MY OVARIES,YET THEYFIND NOTHING.IM 20 YEARS OLD AND FEELING ALITTLE DEPRESSED ABOUT THE WHOLE THING.IF ANYONEWOULD LIKE TO EMAIL ME THAT WOULD BE GREAT
CommentEileen, why don't you tell us what kind of symptoms you are having? This will be easyfor us to give you advise and so fourth. And you might want to try not to type in capscause someone may get upset with you. Anyways, later
CommentHi! I have a couple of things. For Brenda: If you did not have a specialist do the Q-tip test on you, PLEASE do so. Ihave had MANY different GYN's over the years and none of them were ever able to find thepain. I finally got referred to a specialist in the area, Dr. Baggish, in Cincinnati, OH.Dr. Baggish took the Q-tip and went RIGHT TO the spot that hurts. I guess what I am tryingto say is, maybe your GYN doesn't know what spot he is looking for? For Dianne: Thanks for the info. on "The Yeast Connection". I don't know ifit will help me or not, but I had previously been diagnosed with recurring yeat infectionsbefore Dr. Baggish diagnosed me with vestibulosis. Maybe there is a connection? I have had Vestibulitis for 6 years now. I am 24 years old. The first time I rememberhaving pain during intercouse was about 2-3 months after I first became sexually active.My boyfriend at the time didn't have any condoms, so he went to the convenience store andbought the ribbed kind. Supposed to be for MY enjoyment, but I had to make him stopbecause it hurt so much. Ever since then, I have had pain. Not every time, but most of thetime. About 6 months ago my last crappy OB/GYN told me I had abnormal cells and then thatI had to have the LEEP procedure done. For anyone who doesn't know what that is, it iswhere they use an electric current to scrape out possibly cancerous cells in your cervix.Of course, after this, my pain has gotten worse. My husband and I can no longer even haveintercourse. I am now trying Elavil (antidepressant), calcium oxalate, low oxalate diet, squirtingmyself with distilled water after urinating, and I'm also supposed to get a physicaltherapist for the biofeedback. I've been drinking a lot of water too. It used to burn whenI was sitting in a chair. Just from taking the meds for 3 days has relieved that (sofar!). I don't want to get over-exited about it yet, as I haven't even tried intercourseyet. Too scared I think! Anyway, if anyone has any thoughts on my condition, please let me know. Thanks, Christi
CommentThis message is for Erin from London. I hope your symptoms are getting better. I havesome suggestions that might help you. As far as I know I have both vulvar vestibulitis andvulvodynia. My Gyn and his nurse put me on calcium citrate. As you might have read fromother people's stories it didn't work out for them, but apparently it has worked veryeffectively for me. I get a brand that is called Citracal, so hopefully you can findsomething similar in London. I have been taking two tablets one hour before meals 3 timesa day, they are horse pills, but worth the effect of no pain. In addition, it wasrecommended I take proanthocyanadins or as we know it antioxidant substances found ingrape pips or pine bark available at health food stores. And something else I highlyrecommend is getting the book Women's Bodies, Women's Wisdom by Christiane Northrup, M.D.The specific section to vulvodynia is on page 311. You can get this from www.amazon.com ifyou can't find it at a bookstore near where you live. The book in general is wonderful toread on your body and how to take care of yourself. Also, avoiding foods high in oxalateis a must, and don't cheat, 'cause I did and paid for it. The foods I have beenrecommended to avoid are: beer, berry juices, tea (herbal is ok), cocoa, Ovaltine,beverage mixes, baked beans in tomato sauce, peanuts and peanut butter, pecans, tofu, allberries, Concord grapes, citrus peel, rhubarb, tangarines, chocolate (argh! this was thehardest for me to say no to!), vegetable and tomato soups, fruit cake, grits, wheat germ,beans of all kinds, beets, celery, green peppers, sweet potatoes and spinach. Crazy, Iknow, at first when I looked at this list I thought, what the hell am I going to eat? Itis a change, but I am happier because of it. And my last bit of information, something youalso might have seen on the site is exercises for your vagina. It sounds kind of nuts butwhen I was doing everything I was supposed to, the last thing that I was wanting most ofall was make love to my fiance, and it wasn't working. So my Gyn showed me how retrainmyself, physically and mentally. You can practice with your husband but he might be inpain himself because for a little while doing the exercises don't involve sessions ofpassionate, orgasmic sex. So get a dildo if you need to, but doing it with out his malepart or with it, doing the exercises in his presence, at a quiet, relaxed time helps themental part of it. It worked for me Anyway, the exercise: my Gyn told me to applylubricant to him or the dildo (KY or something water based) and lay down, try and relax.Basically you just breath in, and then as you breath out, you push your vagina muscles outand while that happens glide the dildo in, then . I know it sounds kind of nuts but, I amtelling you, it works! And most of all having support from your husband will help A LOT.If I hadn't had the support of my fiance, I don't know how I would have been able to getthrough it all. I will also send this email to you directly in case you don't check thiswebsite often. I wish you luck, please feel free to email me with questions. I am soohappy I found this site! I am not alone! Best wishes to all.
CommentAbout a year ago, my Dr. gave me a prescription for 600 mg of boric acid as asuppository. He gave me a 2 week regime and For a while I did improve. I take all thecalcium citrate, and the pro-biotics, and vitamins. And I recently saw (on the web) theresults of a clinical trial using diflucan and boric acid supps. for 2-4 months! I'm goingto the Dr. in two days to try the fuller therepy along eith the anti-candia diet. Theboric acid did dry out the yeast and I had relief for about a full month after the firsttime I tried it. I hope this has been helpful to someone
CommentThis is for Camille: Do you remember where on the web you saw the clinical study aboutthe Diflucan/Boric acid regime for up to 4 months? I have been suffering from a chronicyeast infection for almost 3 years now. Boric acid and Diflucan have both helped me in thepast, but I can never convince a doctor to let me try either for an extended period oftime. If I could show my doctor the study, then maybe I could get him to let me try it.Thanks!
CommentHello ladies I'm glad to see some of the recent posts, Lynn has given some gooddefinitions between vestibulitis and vulvodynia. My wife has just finished another courseof boric acid suppositories for a yeast infection. We have sex maybe once or twice a weekand I am very careful not to hurt her. She definitely has vulvodynia symptoms with arecurrent tear of the vulva. I'm hopeful she will see a different Gyn just to get anotheropinion and maybe some better answers. I still would like to know how the tissue of thevulva suddenly thins out and tears? I have posted here before that she never had thisproblem until a year ago. I'm glad some of you are getting relief from pain with differenttreatments, however for those of you who suffer because of the tearing I guess more willhave to be done. I check out this site every few days to get information, my wife is sodisgusted with the whole thing she won't even look at the site. By the way the lady whowrote about the vaginal exercise, it sounded a little like kegel exercises. I can see howimproved muscle tone can only help with support and overall health but for the tearing Idon't see any connection. Oh well my best to you all.
CommentI hardly ever check this site anymore, but every couple of months I come by to see ifthere's anything new, and what I have seen is making me really uncomfortable. Here aresome of the things I think are inappropriate: 1. Correcting people's spelling: it's onething if it's a term like "genitofemoral" where we'd want to run a search andwould need an exact spelling, but if someone puts on the caps lock or mispells vulvodynia(when we all have the correct spelling on the URL), why must we make them feel like shit?This is not kindergarten and it's embarassing to see people treated like that. 2. Prayer:Would the Christian people on this site PLEASE PLEASE PLEASE be aware that not everyonewants their religion shoved in their face? I know it's meant as good advice when you tellus to trust Jesus, but to me it's the same as if I told you to give up your beliefs andrealize there's no one but us in this universe. It's alienating, it's offensive, and it'sun-American (although not lately). How many times must we go through this?
CommentFrank, I have been tearing ever since I have had sex for 31 years. It always healsafter a few days. I never thought it was a problem. I have had pain off and on for thepast 12 years. I have always been very sensitive in that area. Sex does not hurt untilafterwards. Sometimes I hurt for two weeks after. I have an intense burning feeling andwearing pants hurt, no matter how loose. I buy pants two sizes larger. Why doesn't yourwife try Estrace or vitamin E oil? That may help her. Does she hurt inside the vagina oris it only on the outside?
CommentThis is for the " Visitor ", thanks for the concern here goes. She has usedEstrace vaginally post surgery. She had some reconstructive surgery for some damage doneduring three deliveries. The Estrace did not help the tearing one bit. I have read that ithelps some women so it has to be a hormone issue. Maybe it is either too strong or tooweak it seemed to cause her labia to shrink. I'm hoping that in the near future Doctorswill look at hormone levels more closely. There is such a thing as optimim levels, rightnow borderline low and high is acceptable. My wife was on the " Pill " for manyyears and two years ago I had a vasectomy. Maybe it is a coincidence but a year afterstopping the pill the tearing began. I have encouraged her to apply vitamin E and I amwilling to help in any way. I see her upset with this disease and I try not to push hertoo much. She has tried Lipocream to heal the area that tears. She says it just makes herfeel wet all the time and believes it may have contributed to another yeast infection.Sure diet contributes to the yeast problem so does stress and how many Moms don't havestress? Once again thanks for the questions, I hope that by sharing this personalinformation we will someday benefit. Good luck to all.
CommentFrank, I have several suggestions concerning your wife. You mentioned stress, that canintefere with healing. One suggestion is to limit sex to every 2 weeks. This will giveyour wife time to heal in between times. Another is to give her flowers, cook a meal,clean the kitchen etc. for her, take her to dinner or a movie without asking for sex. Dosomething nice without her asking and you wanting anything. Be very affectionate withoutinitiating sex. Let having sex be her idea. Tell her you love her and she looks great.Compliment her on things she does for you. Be patient and wait for her. Sometimes whenwomen start going through menopause their sex drive decreases. Later it may increase. Ifyou really love her you will understand. This will help decrease the stress of thisillness. She needs to feel you love her without the sex. Good luck!
Commenthello I have recently been prescribed Atropine cream for v.v. Have any of you tried that? Ihave only been using it for a week so I can't tell whether or not it is helping. Also, I just had my first biofeedback appt. I found the vagi-sensor thing prettyuncomfortable. It is an odd shape. Still, I am willing to try anything!! I have been using Neurotin pills for about 1 month. It reduces my burning urine byabout 50%. Again, I will try anything. I use 200 mg but will soon try 300mg a day. Ithelps me more than the Elavil did. Also, I haven't gained weight with Neurontin. Some daysare good, some days are bad. However, most of you know how that goes. I have had this about a year and it is so shocking to read entries of people that havesuffered for years and years. Good luck to everybody! LisaM
CommentTo: A VISITOR Just to comment on your comment about things that make you uncomfortable: While Icertainly respect that you're entitled to your feelings, I think that you must alsorespect the intent of the comments that others are making: whether it be a request thatpeople not type in caps, or comments on how people cope, including religion. These people,I am sure, are not trying to offend anyone. They are just trying to share with others whatmay be helpful. There are people who visit this site not only from the United States, but from all overthe world. That means diversity: different cultures, different ideas, etc. I think that wemust respect that, and not try to limit people's "well-meant" ideas andcomments, just because we don't agree with them. So, basically, if I don't like whatsomeone is saying, I just skip it and go to the next comment. Please don't take this to be a mean comment to you. It's not meant that way. It's justmy opinion that we all have larger problems to deal with. I, for one, would just ratherfocus on learning all I can about this "disorder" and on getting well, ratherthan bickering over what people say on this website. I hope that you have a good day.
CommentThanks for the advise, believe it or not I already am a pretty helpful guy. I do alotof chores including cleaning, laundry and cooking, at least half of it. We don't go todinner much and money is a concern which adds to the stress. I catch myself most of thetime but things do get said in anger. I really enjoy lovemaking but understand the painresulting from it. I'm not a great guy but I do work at it, I think that's half thebattle. I still think my wifes illness has some cause related with hormones. Sure I canhelp with her stress level but she has to say no to the other causes in her life. I hopeyou will all be more assertive and take care of yourselves. I read the last post abouttolerance. I agree, most of the folks who post here are under enormous pressure and pain,if a well meant blessing is offered there should be no harm taken. I have my own views onreligion but will accept good wishes in any form. Have a good day ladies and hang inthere.
CommentI have been reading some of the recent entries in the journal. I have posted way backin the first or second. I consider myself an old patient of this disease. Read theprevious entries for my complete story. I am a pain free person now. I suffered greatlyfor many years. After years of suffering my gyn listens to me because I know my body sowell. I am 30 years old now and I've been pain free just over 6 years now. I went throughall the treatments, pills, creams, yeast treatments, interferon injections, diets, etc.After a few years of getting no where I had surgery. I had a partial vulvectomy withreconstruction. I have bene pain free ever since. I did not have laser surgery. Because Iwas in pain for so long, I can tell when something isn't right about my body. I traveled 3hours one way to see my doctor. He was a god send for me. His bed side manner was the bestto. He was killed last year in a car accident, Dr. Glazer knew him. I post every now andagain. For those of you who suffer, please don't give up. There is help out there, andjust keep the faith. Your attitude about getting well has to be positive. I knew the darkdays of pain, believe me, I will never forget. Just find a doctor who is willing to testyou, help you, and most of all listen to you. They don't know everything. This disease isso complex, that there is no known cause, and no known cure. It's also tough on thefamilies of the patient. It's not easy living with someone who suffers in pain all thetime. Most of the time that's side of the disease is lost to finding a cure. Even thoughyou suffer greatly in pain, just think of how your family suffers to. They do suffer withyou, but most of the time it's in silence. The best advice I could offer is tocommunicate. Best of Luck for those who need to find relief.
CommentHello everyone. It's me again. First of all I'd like to say to "The Visitor"that posted on 2/1, I want you to know that I agree with you 100% about all you had to sayabout the religion thing. Everyone be so quick to say "Keep the faith and don't giveup, God bless and all that!" I personally get tired of hearing it myself! Cause wedon't know why we were chosen to suffer. I just know that I"ll never understand. I'dlike to send this comment out to Justine. I am so happy for you that you are doing muchbetter now. I too just had a partial vulvectomy just yesterday and so far I'm doing okay.I'm still a swollen down there so I don't see any results yet. But one thing I canhonestly say is that it seems like the left side of vulva still seems to have a littlenerve damage. Cause I felt just a little bit of tingling yesterday and today. My rightside seems to be doing just fine. The doctor said that I should recover in 6 weeks. But Ifeel pretty good. I can walk and all. But I've been laying down all day just to relax myvulva. I will post back in 2 weeks to inform you all how I'm doing. To Frank, I am so soso sorry to keep hearing all the sad stories about your wife. I feel bad for her. Have youever tried the vanicream? I know that you didn't agree with the ingredients but it's stilla good savior. And to answer your question, I believe that vulvuadynia (and the skintearing) is caused by using deodorants or fragrant soaps. That will EVENTUALLY dry yourskin out and damage it. I hope that you find a solution to your wife's pain. I really dosympothize with you. Take care and feel free to message me back.
CommentHello to all my fellow sufferers, and those out there that are trying to help us. Ihave some good news - I have suffered with this condition for 3 years now, and all of asudden most of the irritation and pain is gone! I rack my brain trying to figure out whathas made the difference. What did I do to make this better. I read a comment this eveningthat dates back in Jan. - it says something to the effect - they don't want to hear"Keep the faith, and God bless". I know you are suffering, and it's verydifficult to see beyond the pain and frustration - but if we don't have hope, faith - andlook past our own situations, then we will drown in them. At times it doesn't feel likeit, but can we really truly feel that ours is the worst thing out there? I don't think so.I watched someone very close to me, that I love, die a very long painful death. Do I thinkthat she was deserving of it in anyway - of course not. But I'll tell you something thatshe said to me on one of the many times that we discussed how Jesus could let this happento her. She would say - how can I be willing to take only the good and not the "notso good" - either we believe God is righteous and is control, or we don't. You takethe good with the bad - God's plan in the beginning for all of us was not pain - certainlynot vulvodynia - but man fell - and that's the way it is. I'm sorry for sounding like I'mpreaching - I just know how depressing this condition is, and I really think that we haveto have hope. Someone asked about swelling and any info. What I do several times aday(depending on how bad it is that day) is use a plastic wash basin, fill it with coolwater and sit in it for about 3 minutes at a time. Always careful never to rub dry with atowel, just pat. I too use Aloe Vera Jel, purchased in a bottle from my health food store.Sometimes I use witchhazel for the itching. A salve worked for me for a few months -totally herbal by the name of "Herbal Ed's Salve", made by Herb Pharm - it seemslike sometimes something works for awhile and then doesn't work anymore. Not real surewhy. But I'm pretty convinced that there has to be a natural way to healing thiscondition. Well, I hope that all that come here at least go away with the thought thatthey are not alone in this painful, irritating condition. Thank you Dr. Glazer for thissite!
CommentI tried to post a minute ago but I don't think it went thru. Here goes again. To Lynnthanks the kind words, my wife and I are doing better lately. I realize that things couldbe alot worse so I'm thankful for what we have. She won't use another cream, says theykeep her wet and it's annoying. I just make suggestions it's her body. You know I thinkhormones play a role in this but I do agree that additives in soap and other productscause damage. The manufactures put all sorts of junk in these products and we suffer forit. My wife uses Dove soap and I can tell the difference when I use something like IrishSpring it's strong. I wish the Doctors would consider other causes and not just keepprescribing the creams and anti-depressants. I hope your recovery goes well. Nine yearsago we lost a daughter to a genetic illness. I didn't curse or praise God but it gives mepeace of mind to think that there is something more after this. I know it soundsselfserving but it helps me to deal with it. I think other folks get similar things fromprayer and the whole thought of religion. I don't agree with alot of it, I don't likepeople telling me what they think God means because of what they read or were told. I justtry to accept that if it helps you keep going what's the harm? Thanks again.
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CommentDear Dr.Glazer, I was reading some of the past guestbooks, and found several referencesto IC and vulvodynia. Can you give me any info on this, or where to go for more info. Myvulvodynia has actually improved, in the overall scheme of things, after mymini-vulvectomy. My bladder symptoms now are life-altering. I have had a CT of my pelvis,IVP, cysto(all negative) and 2 instillations of DMSO. My urologist said that IC is sort ofa diagnosis of exclusion which is why he tried the DMSO. I have taken Detrol, Ditropan,antibiotics, etc. Any further suggestions would be greatly appreciated. Thanks alot,bridget
CommentHi everyone! I was just wondering if anyone knew of a web site that has a list of foodsthat v v sufferes should be eating? Being that I just had my surgery, I just wan't to makesure that I eat the right foods so that this doesn't come back. Also do you know whatfoods has soy in it? I don't want to eat soy foods cause I'm scared it will cause the v vto come back. Thanks much!
CommentI've just had a recent increase in pain and been diagnosed with a vaginal strepinfection for which I'm using a hydrogen peroxide compound. As far as I can see on theweb, strep is not uncommon and is usually asymptomatic. Could it have caused my flare-up?Has anyone had experience with this?
CommentTo the person diagnosed with a strep infection, it is very interesting that you werejust diagnosed with this. I am currently seeing a dermatologist who put me on anantibiotic plus diflucan for 2 weeks. It is her belief that this could be caused by animbalance of bacteria in your system that was never resolved. So far it's the only thingthat makes any sense to me. If you want to email me, feel free. I have taken the meds for3 days and feel significantly better.
CommentHi. I have been searching the web after finally getting close to an answer aftervisiting a nurse at my local health department. I'm a 25 year old female and have beensuffering from outbreaks of "cuts" or "fissures" on my vulva. This isthe only discussion board that I could find with women that may be able to help me. I donot have pain during intercourse, unless I have a breakout, and then any kind ofinteraction with that area can cause pain. Even when just sitting it can be painful anditchy. There can be years between breakouts and not knowing what was going on, I wasn'treally looking for any causes. I had one breakout while I was pregnant with my daughterand my OB gave me a topical yeast infection cream (clortramazole 1%). It seemed to give alittle relief but not very much. This last breakout was one of my most severe. I had these"lesions" or "fissures" in the creases between my labia majora andlabia minora, around the clitoral hood, on both sides of my labia minora, and on myperinum. I did not however have any inner vaginal pain. But my whole labia was swollen andred and at times the lesions would become so raw they would bleed a bit. Also, my labiaminora are quite long and I always thought that this may be a factor because they could bea source of trapping moisture and friction. I have even considered surgery to have themreduced. During this last breakout I would not have sex with my fiancee because I knew itwould just worsen my condition. It took 3-4 weeks to heal completely. After my extensivereading I think it may either be a form of vaginal lichen simplex chronicus or vulvarlichen planar. If there is ANYONE that can give me ANY information I would be more thangrateful. My wedding is on the 22nd of April and I would like to be able to enjoy sex withmy new husband! The NP that I have recently seen suggested a moisture barrier such asVaseliene to let the one fissure I have left heal. Any comments on that? Thanks in advanceto anyone that may have some words of advice.
Commentmy wife and i have been trying to find hope and answers to her condition which has gonemisdiagnosed and ignored for years prior to our marriage two years ago. It has been badfor about a year. she keeps getting treated for yeast and has taken many antibiotics thisyear for urinary track infections which i think make it worse. anyway, i've been on lineeveryday for a while and this is new to me. help!
CommentI WANT INFORMATION ABOUT VULVODYNIA PLEASE SEND THE INFORMATION TO: MARGARITA DIAZ11236 SW. 33 CIRCLE PLACE MIAMI-FL.33165-3436
CommentI was wondering if any one has had a hysterectomy and found improvement. If so, was thesurgery done through the vagina or incision on the abdomen? I just think that maybe thiswill help. Please post if you have any info.
CommentHello, I've just been diagnosed with vulvar vistibulitus. I'm 34 years old and neverhad any problems before now.My symptoms are burning and some itching around vagina. I haveexperienced some pain during intercourse. After intercourse I am in a lot of discomfort.The burning is very intense. I'm currently taking clariton for inflamation and itchingrelief, lidocaine and a steriod cream.(Pramosone 2%) My doctor diagnosed me right away andsaid that I should try my meds for about two weeks and if they don't work.......we go tothe next step......... a low dose of anti depressents.......then acidtreatments..........then surgery.Do you think surgery is a cure? Has anyone had any luckwith the treatments that I've listed? HELP!!! I've been reading about changing my diet.Can someone post where I should look to find this diet? Also, I'd love to chat with youall about this disorder.Please let me know of any chat groups on this topic. So far Ihaven't been able to talk to anyone with this same problem.I feel a bit isolated.However,this site has helped me out in many ways! *smiles* With kind regards, Stephanie
CommentTo Mia: I had an abdominal hysterectomy 11 yrs. ago. It didn't affect my Vulvodynia oneway or the other b/c I had it before that.
CommentStephanie, When I was first diagnosed with VV they put me on a steroid cream whichhelped for about 3 months and then the pain came back. I was put back on the cream and itno longer helped since my skin thinned out so much. I was also put on 25mg of Elavil whichis an anti depressant. This helped for a while as well and the pain came back. I am now upto taking 125mg a day and so far I only have a little pain here and there. The only realside effect that I am experiencing is weight gain. I am now on weight watchers and amtryin to lose that but I rather be pain free then skinny. Different things work fordifferent people. For me it is the anti depressants. The specialists at the University ofMichigan are trying to get me to the point where I will have no pain and then they willween me off. Please feel free to email me if you have any questions about my treatment. Iam getting married in June and I know exactly how you feel.
CommentHeather- thank you for your kind words and help. I tried to email you but it didn't gothrough. I'm thinking about trying the Elavil. I'm not crazy about anti depressants but myDR. says that it will numb the nerves and I shouldn't burn or sting as much. Can someonetell me if surgery is a cure all? Thanks agan everyone for your help! Please feel free toemail me.
CommentHeather- thank you for your kind words and help. I tried to email you but it didn't gothrough. I'm thinking about trying the Elavil. I'm not crazy about anti depressants but myDR. says that it will numb the nerves and I shouldn't burn or sting as much. Can someonetell me if surgery is a cure all? Thanks agan everyone for your help! Please feel free toemail me.
CommentThis is for Jennifer who posted a question on 2.1.01 and asked about where she couldfind info about the use of boric acid by doctors. There is lots of good information onwww.prevention.com - there is an answer to a question about yeast infections from Dr MaryMinkin, a gynaecologist, who recommends boric acid. If you go further into the site,you'll find links to the raunchy Yeast Infection Home Page which again recommends boricacid and lots of other DIY plus over the counter measures. The only thing with boric acidis that when the capsule dissolves (I've made my own after finding a stockist of emptygelatin capsules on the Net) after being inserted, it really stings when the mixturereaches the vaginal area. Still, we have all put up with so much pain with vulvodynia thatit's all relative! Well, that's what I keep telling myself after a week of using acapsaicin based cream on my vulval area after reading how it had helped someone. Ye gods -who but us poor sufferers would willingly put a cream made of chillies on the mostsensitive parts of our bodies?! The only way I can stop myself from biting my hand off inpain is by then sitting over a fan heater on the cold setting for 10 minutes. How veryattractive!
Commentit is 1:15 in the morning and all i can think about is killing myself. i have been upsince the past 3 hours crying and wishing that the pain will go away. but it hasn't. ihave no one to turn to. my immediately family all has disowened me and my husband iscurrently incarcerated.i lay down in so much pain and all i could think of is goingoutside to jump off a building, running in front of a big truck, or asking someone to killme and i'll give him all my posessions. but i can't because i have a 6 year old child thatneeds me. i'm all that he has to take care of him. i had surgery about a month ago andthat has helped somewhat, but it did not take away all the major pain. please someone helpme and talk to me. i have no one to turn to except my mother in law and i'm too embarresedto call her and tell her i'm contemplating suicide. i don't want noone to tell me aboutgod or to keep the faith because if god so loved his people, he would never let us sufferlike this! please someone help me! i'm scared and i want to kill myself so bad but mychild needs me. i don't know what to do right now. i cry, i yell, i bang on the walls andbed to relieve my anger and frustrations. i use to be a christian until i became affecteda year ago by this horrible disease.this cannot be a test! i refuse to believe it! i don'tdeserve any of this shit! i want to die right now, but my child is the only reason why i'mstill here!
CommentTo Anonymous: Of course it's not a test. That's just something people say to makethemselves feel better. If it doesn't help YOU, put it out of your mind. In times in mylife when I've been really depressed, the only way I can get through it is to plan one dayat a time and not think past that day. For example, this thursday your plan might besomething like "go to work, investigate chronic pain support groups on the web, makedinner for my son and read him a story, go to sleep." It sounds so simple, but mymom's a therapist and that approach is sometimes the only thing that works. There is awebsite (I forget the name) where people with chronic pain or illness can find e-penpalsif they feel like they no one in their lives understands what they are going through. I'msure you could find it on a search engine. Also, don't be embarassed to ask your familyfor help. Most people have gone through depression at some point. I can't guarantee thatthey will understand, but if not, you're no worse off than you are now. Good luck. I thinkyou've taken the first step by realizing that it's you, and not some arbitrary humanconstruct of the supernatural, who needs to help you. GOOD LUCK!
CommentTo ANONYMOUS: I know how you feel, being in such tremendous pain; but, I can tell you that throughresearch and perseverance and trying new treatments, I DO FEEL SO MUCH BETTER THAN I DID AWHILE BACK! Please don't give up! You ARE needed and loved. Keep that motivation. And, usethat motivation to keep trying to get well. Perhaps you should try a different doctor.And, if you don't want to talk to your family, you could find someone else to talk to,such as a support group. If you check with your doctor, I'll bet he/she could lead you tosomeone to talk to; someone that can help you. Perhaps you'll feel more comfortabletalking to someone like that rather than someone you know. Please don't give up. One day, a cure WILL be found; I believe that. But, until thattime comes, there are lots of things to try to give yourself some relief. These guestbooksare loaded with good information from women all over who understand what you're goingthrough. Get lots of ideas and then take them to your doctor for discussion. I'll be thinking of you and hoping that you find some relief and peace. Hang in there,ok? And, please keep in touch with us, so we know how you're doing. We care about you;we're all in this together.
CommentTo Anonymous: I hope for yourself and your child you will stay strong and not suffer insilence. You can't get help without asking for it, get to a Doctor who will prescribe someAnti-depressants. There is nothing to be ashamed of in seeking help and using medicine torelieve pain. Yes your child needs you so get going, don't waste another minute. Painclouds your thinking and you can't see the light at the end of the tunnel sometimes.Listen to these women and get help. Good luck!!
CommentThought I'd give an update. Had the vulvar biopsy and it came back negative. Justshowed irritated and inflamed skin - no lichen schlerosis. The GYN wants me to continue touse and clorbetasol and now elavil 25 mg at bedtime. I questioned her on the use of asteroid cream and thinning of the skin and she said that it is the most recognizedtreatment for this condition. I just started the elavil last night and so far, the itchingis less, but the burning remains. I know I have to give it some time and I will; however,I'm not sure if I will use the cream - will try the vanicream instead. I asked my GYN'snurse about vulvadynia and am waiting for a call back from the GYN on this. I've also beenseeing the chiropractor, but she is not certified in ART and there is no one in my areathat is. She has helped with the back problems though. I told the GYN I would give the anti-depressants a try, but, based on what I've readhere, I don't have much hope that it will work. The chiropractor suggested a "yeast cleansing" regimen that she swears worksto clear yeast out of your system, but if all cultures come back negative, do I reallyneed this? I'm thinking about it. I'm ready to try just about anything at this point. Take care....
CommentRHONDA: Did your chiropractor tell you what this "yeast cleaning" involves? Thanks! Deborah
CommentDear Anonymous,
CommentDear Anonymous,
CommentDear Anonymous, I understnad your pain, disapointment and utter dispair. But please stay here. I toohave been feeling like killing myself, but I am too determined to find an answer. Here iswhat I am trying.... see if it helps you or any woman you know. Don't keep this nightmarea secret! Just last week I told someone about what was happening with my body and to myshock, she has Vulvosynia too! It was such a relief. I have an actual person who feelslike me to confide in face to face. Go ahead and take a chance, start talking about this,get as loud as you want. We are all brave and must let our voices be heard. Anyway, sorryI digressed to the positive affirmations in my mind. he he. So here is what I am trying:1. Taking daily baths in a product called "Instant Ocean" . You can buy it atyour local pet supply store where they sell fish. It is an artificial sea salt. I got thisinfo. from another woman at this site. This product for the last 3 weeks has changed myeveryday. I bathe in the morning before work in a tub full or warm to hot water with 2cups of the salt. It has given me sooo much relief. I can enjoy most days with a bath. Iguess it is the healing properties of the salt. It really makes sense. After all, mostpeople feel their best when they can get in the ocean, and most injuries or cuts heal thefastest in salt water. Try it! I know it sounds crazy, but it might work. What do you haveto lose?? Make sure you give it time, approx 1 -2 weeks to start working. 2. Get some nicecotton boxer shorts. Exchange these for underwear! They will be lose and let your labiabreathe. 3. Get a big, baggy pair of overalls. This I have found is the loosest clothingaround. ;-)) 4. Check out a low oxolate diet. 5. Check out a Candida (Yeast) killing diet.There are many books at the book store or order on line from Amazon.com or Half.com. Thebook I am currently attempting to follow is "The complete Candida YeastGuidebook" by Jeanne Marie Martin. 6. If you decide to have sex, use Grape Seed oil..pure! It is a natural oil and does not contain any chemicals or irritants. People havebeen using it for thousands of years. Why not pay attention to a good thing. Oh, don'tknow how it works with condoms?? 7. Wear only white cotton underwear. 8. Use a naturaldetergent like.. ECO for washing and use no fabric softener. 9. Treat yourself to timealone or with a trusted friend. Go to the music store, get a great book at the libraby(its free), get outside and most important, don't forget to dream. 10. I send you a hugehug and hope some of these things work for you. Peace
CommentThis posting is for Lynn, I read your post back to me. You should feel better as yourbody heals. It takes a long time to recover from this type of surgery. I had one spot thatdidn't heal up right away, the stitch didn't dissolve all the way. It took a good 3-4months before I felt totally normal. Just follow your doctor's post op directions to theletter. The only problem I have now is yeast, which I had before. As long as you don'tfeel any burning or stabbing pain you should be on the right track. You'll feel sometingling and itching as you heal. I hope you are feeling better with each passing day. NowI mark each year that I'm pain free, I'll never say cured, just pain free. If you wantoxalate diet information you can look at www.vulvarpainfoundation.org. Hope thisinformation is helpful. Please feel free to email if you want to.Justine
CommentMany thanks to the lady who answered my question about the hysterectomy. I believe thathormones have an affect on my pain. When I use Estrace cream internally and externally, Ifind some relief. I was hoping that I could have a hysterectomy and then only have to useestrogen rather than estrogen and progestin. I have gained alot of weight and I feel thatthese hormones are part of the problem. Any insight about this? Are you taking hormones. Please let me know of your story andif you are still suffering with this disease. Thank You.
CommentTo Mia: If you have a hysterectomy you won't have to use Progestin, just estrogen. I'mnot using anything besides Estrace cream b/c I felt worse when I was on estrogen before,but I'm having more crappy meno symptoms now so I may give it another try soon. Yes, Istill have VV. Right now it's under control but I recently had a bad flare-up. I'd hate tosee you go through a hysterectomy in hopes of getting rid of the VV symptoms, b/c it maynot work.
CommentIf anyone has any info regarding hysterectomy and vulvadynia, please contact me. I amalso wondering if anyone else feels this is hormone related. Thank you.
CommentThank you for answering so quickly. I have posted my e-mail address, so please feelfree to contact me there. I would like to discuss this in more detail. Thanks
CommentDr. Glazer, I am currently working in a large OB/GYN office. I am a nurse doingbiofeedback for vulvodynia patients. I have read alot of your material regarding thisproblem. I would appreciate any other input or new information regarding this therapy. Ibelieve it really can help these patients, as it seems there are few other things that do.Thank-you, Donna Legler
CommentTo Stephanie: I'm surprised that your email didn't go through. I also have a hotmailaccount. The address is above. Feel free to contact me.
CommentDeborah - Yes the chiropractor gave me some information on this process. processinvolved which doesn't sound too bad. It's homeopathic and rids the body of candida fromthe intestines. It involves using liquid Caprol, Psyllium Seed, liquid Bentonie, andLactobacillus Acidophilus. The first three ingredients are mixed with 6 oz. of water and2oz. of fruit juice (2 tsp Caprol liquid, 1 well rounded tsp. Psyllium powder, 1 Tblsp.liquid Bentonite and 1tsp. Ultradophilus) once per day for anywhere between 3 to 8 weeks.There can be some side effects with this also. The chiropractor gave me a brochure with a questionnaire that explains the whole thingin more detail than I have time to enter here. It tells what symptoms this process mayhelp to clear up and what each ingredient does in the process of cleansing your body ofcandida. The questionnaire helps to determine if this program may be for you. She (thechiropractor) shared with me a story of one of her patients who had MS and got chronicyeast infections from all of the meds she was on. This woman was completely free of yeastin about 10 weeks, according to the woman's MD. If you want a copy of the brochure, send me your mailing address to my e-mail addressand I will forward a copy to you.
CommentTo Mia, I agree with the other lady who posted you I to had a complete hysterectomy llyears ago and still get vulvodynia off and on. I am on just estrogen have been from thebeginning and I must say I had vulvodynia way before my surgery for a lot of years so Idon't know if the surgery will help with this condition or not. Each person is differentso who knows. As to hormones who knows if they play a part or not. You have to do what youfeel is best for you. Good luck on whatever you decide to do.
CommentHello all, I'm sending these messages out to Karisa, Crow Cianciola, Stephanie andHeather. To Karisa- It souds to me that you have "Vulvodynia" I will suggest foryou to go purchase some "Vanicream" and put on a small thin layer everyday aftergetting out the shower. And what are you considering surgery for? If you have Vulvadynia,surgery is not the answer. Surgery is usually for the Vestibulistis for those who sufferwith that. If you need to know the diffrence between Vulvodynia and Vestibulitis, go checkout my posting about 1-2 weeks ago. I did give both definitions. Good luck to using theVanicream. It works for me (6 months now) and I'm confident that it will work for you.Crow Cianciola- you never did mention your symptons. What kind of symptons are you having?If you do have vulvodynia or vestibulitis, I would be the "First" to tell youthat you "Need Not" take any antibiotics anymore! They are what makes thesituation worse! I don't know much about Urinary track infections so I can't comment onthat. But a majority of us on this line are Vulvodynia and Vestibulis sufferers. Go checkout some of the previous postings and you'll see how others will also tell you thatantibiotics makes it worse. If indeed the doctor tells you that you do have to take it andyou in fact do have any of the "V" conditions, I would take an antiobioticsubstitute. And you can go into any health store and get a book on antibiotic substitutes.Good luck to you. Heather- Please do "Stay Away" from the steroid creams! Theyonly coat your skin for about 2-3 months and then it will wear off. Then it will start toaffect your 2nd layer of skin and that will cause more pain than at the begining. I willnot use any kind of steroid creams anymore! I have been using Vanicream for 6 months nowand I have not been affected by the vulvodynia since then. Stephanie- It sounds to me thatyou "Do" have Vestibulitis. I feel bad for you because I know"Exactly" what you are going through! You were wondering if you should try theElevil; Well I have heard some good and some bad about it. I refused to take it after mydoctor decided to put me on it. I have never taken any anit depresents. All I've taken formy vulvodynia is the vanicream and for the Vestibulitis, I just suffered with it foralmost a year now. I decided to have the surgery and you asked if it was a cure? Well Iwould not what you to have the surgery just because I tell you that I had it and it hassomewhat helped me. I have just had it only a week ago and I feel a little better but Iknow that I still going to take me another 1-5 months to heal. I know the pain that I hadin 2 places seem to have gone away. But there is still one area that bothers me on andoff. But I have to give myself time to completely heal for me to say if I'm 100% better orjust 75% better. I will not recomend surgery for anyone else but I did it myself becausemy heart was in it and I felt that that was the only safer way for me to get rid of mypain. The antidepresants have too many side affects for me to even think about. So I didwhat I felt and I would hope you do the same. Good luck to you and I will post back in acouple of weeks to inform you all how well my recovery is comming along. oh and anotherquick thing, One doctor told me to not have the surgery because it will cause a littledeformity. He was "Absolutely Wrong!" My vulva still looks the same so if you dohave the surgery, I would not even worry about deformities. Take care of yourself.
CommentJustine, thank you so much for the information. I want to Email you sometime in thefuture as I heal and recover just in case I need to talk to someone or if I have anyquestions. I again just want to say that I'm "VERY HAPPY" for you that you arepain free and have been for 6 years now. Continue to take care of yourself. Thanks againfor your support.
CommentLynn, I would like to ask you about the Vanicream. Does it have fragrance and any ofthe parabens in it? I am allergic to those ingredients and probably others I am not awareof. I am currently using a steriod ointment. I can't get cleared up so the Dermatologistgave me a stronger one to use once a day for 2 weeks. Also, I need to find a good naturallubricant to use that can be used inside and outside the vagina and is allergy safe. Anyrecomendations? I hurt on the vestiblule to, but no spasms. Only after sex. Probably it isthe skin like the surrounding tissue, but it does feel sore in one spot. I hate all ofthis! I want a cure!
CommentLynn, I mean I hurt after sex. I have no spasms at all that I am aware of. There isjust burning and sometimes a sore feeling on the vestibule. I am very red in the vulvaarea. Just wanted to be clear.
CommentLynn, Where can you buy the Vanicream? Is it at any regular drugstore, over thecounter? Or, is it a prescription drug? My dr. says that I have both vulvodynia andvestibulitis. I have had it to the point of severity for over 6 yrs. now. Before that, itwas just an annoyance that didn't effect me...but now, it's a different story. Pleaseemail me here or privately about where I can get this Vanicream!! Thanks...Sara Lee
CommentDear Lynn, Where can I find Vanicream? Is it over the counter or is it prescription?Please email me privately or here at the Glasier sight. Thanks..Sara Lee
CommentHi. These messages are for Fran and Sara Lee, Fran- I Know just how you feel. I am sickof this crap as well! But I just had surgery a week ago and feel somewhat better. But toanswer your question, "NO" the vanicream doesn't have any fragrance in it. Andthat other ingredient you mentioned, well I'm not sure what that is. But here is there website address; www.psico.com You can log on there and it will tell you all about thereproducts and the ingredients. And girl do me a favor " PLEASE GET OFF THE STEROIDCREAMS!" If the stronger does does help you, It'll be only temporary, trust me! Idon't want to act or sound as if I'm a doctor and that I know it all, But I know what Iknow because I've been affected by all this mess for almost a year now. So I learned a lotabout some creams and antidepresents. Good Luck to you Sara Lee- Hello.Well I purchase theVanicream from"Targets" store. But It's not sold over the counter, It's soldbehind the pharmacy However "YOU DO NO NEED A PRISCRIPTION FOR IT" If you have awalmart out where you are, you might want to try to check there pharmacy and see if theyhave it or if they can order it for you. I know there is a vanicream and a vanilotion. Iuse the vanicream and I don't know much about the lotion. Good luck to you. Bye now
CommentI just want to know is there any Black females out there who are infected by this messand who live out here in Arizona? I'm looking for new friends, who'm I can relate to andwho'm will understand why I get frustrated at times and who will not get upset at me whenI hurt. I want someone who I can go out and hang out with. If you're interested, pleasemessage me back.
CommentHi it's me again, Well I don't care what color you are actually. I just want someone tohave fun with that's all.
CommentWell I have been waiting to see if the good news I have was going to last more than amonth. Well I am into my second month and still it is working. So I feel I have to shareand hope that the success I am experiencing is not a fluke and will work for others too.First off I started with Liquid Minerals there are several different brands and I do notwant to recommend any certain brand just that I take 2 tablespoons every morning. I alsotake these supplements, vitamin E-400 1 x a day, L-lysine 500mg 1 x a day, Grape Extract60mg 1 x a day, Acidophiilus 1 x a day, odorless Garlic 500mg 1 x a day, Ginkgo Biloba -24% 2 - 3 x a day, B-50 2 - 3 x a day, Q-10 Coenzyme 50mg 2 x a day, and here is what Iwas told to add 2 months ago with the Liquid Minerals Royal Jelly 100mg 1 x a day exceptfor one with before menses start then add another dose (2 x a day) until one week ofmenses. So for two weeks a month I take 1 x a day and for the other 2 weeks I take 2 x aday. Also to use Udder balm morning and night around the outer vagina. Also to use as alubricant during intercoarse. Well good new wonderful relief now for this girl. Please tryand I will pray its not a fluke and it will help you too. Lynn
Commentthis is to anonymus- please try to hang in there. i think we've all been in the sameplace you are now. there has been more than one occasion that i really just wanted to goto sleep and never wake up again. you have a computor so you are only an e-mail away fromany one of us. before i found this site i was completely alone and that is a very scareyplace to be. try to take the time to go through all of these guest books because throughthis type of research you will find yourself in some of the other descriptions and thensome help. i can tell you a couple of things that make my pain instantly worse. more thanone cup of coffee, any amount of chocolate, sometimes tomato products, pants with the seamtouching my vulva area, and ovulation. i am on 175 mg of amitriptiline, evening primrosebecause it eases the pain around ovulation and i am checking into a pain killer they calloxycontin. it was on the tv the other night and it has been referred to in this guestbook. they say it is a miracle for those of us living with chronic pain. sometimes theemotional pain is worse than the physical pain and telling someone can be very hard. mysister knows and ofcourse my husband and some very close friends but you must findyourself someone to confide in. you can e-mail me back and we can continue to support eachother, and that in itself will ease the pain. i live in vermont and my doctor is inconnecticut, and i have several doctors here in vermont all doing what they can to help.find yourself a doctor that is willing to go the extra mile for you. and remember we areall here for you and you for us. take care and i will look forward to talking to you.
CommentI see there is another Lynn on here. Well that's a coinsidence. Anyway, I'm stilllooking for a friend to hang out with here in Arizona.I'm in my mid 20's if you must know.Please don't hesitate to message me back
CommentI am extremely diet sensitive. Soy is my enemy. It seems like every food has some typeof soy or soy derivative. Please send tips containing non soy foods!! Does anyone know ifthis type of flour can be consumed on the low oxalate diet: enriched unbleached flour(wheat flour and malted barley flour)? I know the wheat flour is okay because it is thesame as plain flour, but what about the malted barley flour? Please if anyone knows, letme know. Thanks.
CommentTo Julie, You are right when you say to avoid soy but sometimes it is impossible becuzeverything has some soy in it. So don't stop eating everything just try and avoid the highsoy products. Also whole wheat flour is a very high group for us people with oxalate whoare trying the diet so I am not sure about that type of flour, white is ok and they sayrye bread is very low but do they have rye flour I don't know about that. You should checkout the list of high oxalate foods that might help you since you are diet sensitive. HopeI was of help. Good luck.
CommentHello Ladies (and Gents!) The first part of this message is for Stephanie: You said that you were told to try changing your diet. This probably means going on thelow oxalate diet. I found a really good resource for this on the web. The address is: Does anyone have any info. on biofeedback. My doctor told me to get a physicaltherapist to try this. Do I just call up ANY physical therapist (this seems odd!)??? Orare there special physical therapists for this? Any info. you have would be great. Feelfree to e-mail me privately or post it on this page. Thanks! Good luck to all!!!
CommentThis is for Lynn, This is my first time visiting the Guest Book. I have also beensuffering from both the V's!! I just found out three months ago that it was Vestibulitisand has probably been than for over 15 years!!! 15 long YEARS!! I have tried all the medications and creams mentioned in the postings I have read. Ijust went to the store and purchased the Vanicream and Unscented Dove soap. I am lookingforward to trying it. I also will not washing my hair in the shower. I too felt like there was no hope. After reading the postings I feel like I am notalone.. You really feel like you are nuts!! I do have a great doctor who is trying butsaid he is not the expert it that field and sent me to a specialist. He perscribed thesteriod creams and after two weeks I said no more! They didn't held and even burned! The next step he wanted to discuss was lazer surgery. I want to try the vanicreamfirst.... I do notice that certain foods like Chocolate, Coffee do make me worse. I want to wishyou well Lynn and everyone else out there dealing with this. I am going to give my Doctorthis site and hopefully he will check in and see what he can learn also. Thanks for sharing. After 15 long years and probably more, I finally feel like there ishope. Thanks everyone for sharing.. I can't believe I am sharing!
CommentThis is for Lynn, This is my first time visiting the Guest Book. I have also beensuffering from both the V's!! I just found out three months ago that it was Vestibulitisand has probably been than for over 15 years!!! 15 long YEARS!! I have tried all the medications and creams mentioned in the postings I have read. Ijust went to the store and purchased the Vanicream and Unscented Dove soap. I am lookingforward to trying it. I also will not washing my hair in the shower. I too felt like there was no hope. After reading the postings I feel like I am notalone.. You really feel like you are nuts!! I do have a great doctor who is trying butsaid he is not the expert it that field and sent me to a specialist. He perscribed thesteriod creams and after two weeks I said no more! They didn't held and even burned! The next step he wanted to discuss was lazer surgery. I want to try the vanicreamfirst.... I do notice that certain foods like Chocolate, Coffee do make me worse. I want to wishyou well Lynn and everyone else out there dealing with this. I am going to give my Doctorthis site and hopefully he will check in and see what he can learn also. Thanks for sharing. After 15 long years and probably more, I finally feel like there ishope. Thanks everyone for sharing.. I can't believe I am sharing!
CommentHi Debbie, Thanks for the message. I'm so glad you went out and bought to Vanicream. Itruly believe that it will work for you. I just want to offer a suggestion; When you takea shower and wash with the Dove"Unscented" Only wash the Vulva like once a week.You should not start off using the Vanicream after you washed with soap. But we all knowthat we have to clean down there sometime. But when I first started using it, I didn'twash my vulva with any soap until a month later, I wanted to give my vulva plenty of daysto breathe without any soaps of anykind. But now I wash down there with myDove"unscented just 3 times a week. Other days, I'll just wash with water. But I alsorecomend that you put the Vanicream on once(or twice) a day Right after getting out theshower. Well that's my routine. Could you PLEASE message back in at least 2 weeks to letme if it works for you? I check this site everyother day. So I'll be sure not to miss yourposting. Oh and by the way, You are the 2nd person that I noticed that have said thatchocolate makes it worse. I swear, I didn't know that! I've been eating a lot of chocolatelately, but I hadn't notice it's effect. But I will try to stay away from Chocolate fromnow on. Thank you so much for that information. Take care
CommentI have a question, Does anyone know of any good excercise that I can do that will notcause any pain? I use to be so active and energetic. But now that this mess has takenover, the excercising that I normally did began to cause pain. I liked to do arobics andjog. I wish I could do Tybo; But that's obviosly out the question. Anyone have anysuggestions? Oh and to let you all know. It's been 12 1/2 days since my surgery. I amdoing fine. But I still have random pain in my left top side of the vulva. I'm hopingit'll go away in the weeks to come. But where the other pain were, the doctor hassuccessfully removed those 2 areas and I hadn't hurt in those areas since. then.
CommentLYNN: I've been doing yoga, and I feel really good doing that. It's not causing me anypain, but then I haven't had the surgery, so just be careful with whatever excercise youchoose to do. There are some good yoga shows on PBS: one is called Wai Lana Yoga and the other iscalled Stretching for Life with Priscilla Patrick. The Priscilla Patrick one is on only in15 minute segments so it doesn't show up on the channel guide: I just stumbled on it. Butyou can call or email your PBS station to see if they carry it. Wai Lana Yoga is a halfhour show. In my area, it comes on at an hour when I'm not able to watch it, so I justtape it for later. Hope this helps! Deborah
CommentDebora, thanks for that message. I guess I can try that;. I've also decided to go outrollerskating at the park. That shouldn't cause any pain. I just need to go out and buy mesome skates. I can skate very well so I'm not worried about hurting myself. Thanks again.
CommentI just read some of the posts over the last few days. Someone mentioned laser surgery.Please whatever you do, do not get laser surgery. Just think about what a laser does toskin and how it works. It burns your skin. I've spoke to woman and doctors, most of thetime is makes it worse, and makes the skin thinner. The worst thing you can do is lasersurgery. The question about the physical therapist: You need to get a prescription fromyour doctor, or referral. Sometimes the doctor will know a PT that treats VVS...Justine
CommentHello, I just want to say that Justine is "ABSOLUTELY RIGHT"! There is a bigrisk when your doing lazer surgery. I've heard a lot of bA
CommentHI ALL. I JUST WANT TO SAY THAT I AGREE WITH JUSTINE AS WELL. I HEARD THAT LASERSURGERY IS A BIG RISK AND IS NOT AS EFFECTIVE AS A REGULAR SKIN REMOVAL SURGERY.
CommentHi Lynn, Thanks for your quick response. I tried the cream and it didn't burn!! That waswonderful.. I still had times today when it really hurt, but at least I had a hour or soof relief. I will continue to use the cream and let you know. I have a hard time with giving upchocolate! I know I have to give that and coffee up along with many other foods. I noticethat to much tomatoes and citrus makes me worse also. Stress does it also! Boy lots ofthings make it worse. Nylons don't help eigher. I hope you are continuing to improve. Did you mention theCalicum Caltraite (Spelling??) I wanted to try that also.. I will get some of that thisweek also. I will be out of town from for a few days. I will check back Wednesday nightbefore I leave. Thank you to everyone once again for sharing.... I feel a whole lot betterknowing I am not alone. After 15 years this is great! Have a nice week everyone.. DEB
CommentThere's supposed to be mention today of The NVA and Vulvodynia on Oprah's show.Everybody watch it!!!
CommentWell I just saw " Oprah" and the three minute mention of Vulvodynia. I tapedthe show and maybe I'll watch it with my wife later tonight. I was switching channels onanother T.V. but from what I saw most of the show was about sexual dysfunction includinglow libido. Oprah did a show a few years ago with Christine Ferra in which low testeronewas mentioned along with low libido. They mentioned a topical testerone cream as atreatment. My wife had her hormone levels tested back then and yes that one was low. HerGyn suggested I take her to dinner! Brilliant suggestion, He and I got into a big argumentover the testerone cream. He admitted it was safe but did not want her to try it.Eventually she did give it a try but it did not increase her libido. So maybe I'm moreagressive that's not the point I'm trying to make. I just left that office thinking howmany women saw that show and got up the courage to ask their Gyns. Then I thought how manywere shut up or ignored. Maybe hormone levels are a part of this disease if it is notthoroughly looked into how will we know for sure? I don't blame my wife one bit for notwanting to have sex as much as I do. I certainly would not to if everytime I made love Iended up with cuts on my genitals and burning pain. The Doctors are our hope fortreatment; get them to listen. I have young daughters, I don't want them to suffer as mywife does. All the creams and cover-ups don't amount to a real treartmnet and just mightdo some harm. I have read of women on this site using all kinds of things to relieve painand I can understand the motivation. I just would like the Medical community to be moreinvolved. Forgive me if I end with good luck to you all.
CommentI was so excited to watch Oprah this afternoon. I have been to over 6 doctors who alltold me that the burning I felt during sex was all in my head. I had given up on treatmentor finding a sympathetic doctor. I was glad to learn that other women are suffering, and Iam not alone. I only have burning from time to time and it is only during thrusting. Sometimes sex isvery enjoyable. Does anyone else have this problem only from time to time? It seems to beworse right before my period. Would this Vanicream work for me? I would love to hear anyadvise you have.
CommentI just watched Oprah's segment on Vulvodynia. As Frank said, it lasted for 30 seconds.I am VERY pissed at Oprah b/c the Drs. who appeared on her show today suggested that shedo a show on Vulvodynia and she made a joke about it and suggested that the sufferers justcontact the National Vulvodynia Association. I knew she wouldn't give a damn unless shehad it!! Now I know why I never bother to watch her show on a regular basis!!!!!
CommentI'm interested in the comments on pudendal nerve stimulation. My family doctor told meof a recent discovery at Mayo regarding pudendal nerve entrapment, and surgery to relieveit. It is thought that this causes prostratitis in men. It is seen in bicyclists as well.I was given a diagnosis of IC 6 years ago. Now the Dr. is waffling because I have goodbladder capacity. My first episode of V V D was in '99, and I am currently in the throesof an episode now, with pain in the vulva and bladder area and groin. This started aftergoing back to work at a sit-down job. Does anyone else get trace blood in the urine? Ihave off and on. It disappears without treatment, but has been seen again, so I'm headedfor a cysto and biopsies. I'm post menopausal. I know this is long, but I've been readingfor a long time, and these questions persist.
CommentThis is my first time on, I was just diagnosed with VV, I delivered my first and lastchild three years ago, bad delivery, and never have been the same since. Sex always hurt,yeast infections, and started the tearing about a year ago. My husband has been patent sofar, but we are both frustrated. My GYN just know properly diagnosed me, he prescribed thevitamines and steroid creams, of which after reading this site I am reluntant to try thesteriod creams, it appears they may be a waste of time. Any suggestions would be greatlyappreciated. I am 31 yo, am very active, but hate this itchy, tearing vagina of mine.
CommentTo Sandy: You are in the right palce for advice. Just reading several of the posts willgive you a good start. My wife has used boric acid suppositories for the yeast. They arevery effective and can be made at a compounding pharmacy. My wife has been tearing forjust over a year. She had surgery to correct some vaginal damage caused by threepregnancies. The Gyn also formed a new scar at the site of the tearing. This did not help.He gave her Estrace cream to strengthen her vagina but this did not help the tearingeither. We have tried Lipo-cream and Vitamin E capsules directly on the tear to heal itand prevent further damage. This hasn't helped. A lady named Lynn has said Vanicream isvery helpful. You can get it without prescription. I am still amazed at how sudden thiscondition can be. My wife never had this problem and then the tearing started. I thinkhormones play a part in it but that has yet to be proven. Try to stay positive. I knowthis is about as personal a topic as one can imagine but without conversation there won'tbe much done to find treatment other than anti-depressants and more creams. Best of luckto you and your family.
CommentI think everyone of us who saw Oprah should e-mail her. I just saw her show and she wasincredibly insensitive - she gave the impression that vulvodynia was a pretty funny wordand reinforced the idea that it is basically an unmentionable subject- pretty weird for ashow where people go on national tv and revel in revealing every detail of their mostprivate relationships.
CommentDoes anyone have any suggestions about panties? I have been feeling much better.However, when I am wearing clothes my panties crawl into my crotch and drive me crazy! Iam wearing cotton underwear. This causes me to burn. I am afraid to not wear pantiesbecause the fabric of my clothes may hurt me. What is a person to do? Dresses are almostimpossible, because of my lifestyle. Please someone give me a suggestion.
CommentHi. My name is Gabriella. I can't believe so many women out there have this problem andthere is no definite cure....I am 32 years old and was diagnosed with vulvodynia about 10years ago. My story is like that of many other women. My problem started off with whatseemed to be recurring yeast infections, but it was obviously something else. My problemis now triggered with intercourse (burning, redness, inflamation, stinging etc.). Agynocologist in my area (Ottawa, Canada) first told me what I had and since then Iconsulted a variety gynocologists, dermatologists etc. No one was able to help. Likeothers I have tried anti-depressants (but couldn't stand the side affects), antifungals,low yeast diet, hormone creams...One Dr. suggested surgery, but I can't bring myself to doit. I have just started trying the calcium citrate, low oxylate diet treatment and foundout about it on my own. I feel helpless because my own family Dr. has retired and Ihaven't been able to find a Dr. that is very knowledgeable and committed to helping me inmy area. If anyone knows of a Dr. or support group in Ottawa, Canada I would really,really appreciate finding out about it. Thanks for this website. I think it has thepotential of helping a lot of women.
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CommentI wear cotton boxer shorts with casual skirts. Or I don't wear underwear at all.They're not very sexy, but they're more comfortable than cotton briefs.
CommentI suffered with this condition for all of my adult life. Sex was unbearable. Around1988, the Phil Donaho Show had a doctor from John Hopkins and there was a panel of guestswho also had this condition. To my amazement there were other women with the same problemI had. I entered the doctors study. The results of the doctors questionaire, I was in theworst group. In May of 89 I had a missed diagnosis of an appendicitis, I lost my rightovery and right tube. After that all symptoms went away. I wrote to John Hopkins, butnever heard from them. The Oprah Whinrey show, yesterday, was the first time since that Ilearned there was medical conformation of this condition. Praise God! As a child I didhave a injury on a boys bike, I am wondering if that was the cause of this condition.Hmmm! Thanks for all your hard work. Sincerely Kris Stephenson
CommentYou could try wearing the largest size white cotton knickers you can find! That way theelastic doesn't rub your legs (I have found I am sensitive to it since having vulvodynia).Don't wash them in anything but the hottest wash on your washing machine. I understandthat's also a good thing to do for anyone who has yeast problems as the yeast can live onclothes but heat (hot water or even an iron) can kill it off.
CommentYou could try wearing the largest size white cotton knickers you can find! That way theelastic doesn't rub your legs (I have found I am sensitive to it since having vulvodynia).Don't wash them in anything but the hottest wash on your washing machine. I understandthat's also a good thing to do for anyone who has yeast problems as the yeast can live onclothes but heat (hot water or even an iron) can kill it off.
CommentHI ALL, I HAVE MESSAGES FOR DEBBIE,SANDY, FRAN AND LISA. DEBBIE-GLAD THE CREAM DID NOTBURN YOU. JUST GIVE IT ABOUT 1-2 WEEKS AND YOU SHOULD START FEELING GREAT RESULTS. I NEVERMENTIONED ANYTHING ABOUT THE CALCIUM DIET. I DON'T KNOW MUCH ABOUT IT. SANDY-DON'T RELY ONTHE STEROIDS TO CURE YOU. IT WILL ONLY BE A TEMPORARY AFFECT THEN IT WILL MAKE THINGSWORSE AND CAUSE MORE PAIN FOR YOU. FRAN, I THINK YOU SHOULD TRY THE VANICREAM AS WELL. ITWILL MOISTERIZE YOUR VULVA AND I DON'T THINK YOUR COTTON PANTIES WILL BOTHER YOU AS MUCH.WHAT KIND OF LAUNDRY SOAP YOUR USING? I USE CHEER FREE. IT HAD DONE WONDERS FOR ME! LISA-I'M SO PISSED I MISSED THAT OPRAH SHOW. IF I READ THE POSTINGS YESTERDAY AND KNOWN SHEDTALK ABOUT IT, I WOULD NOT HAVE MISSED IT! BUT I NEVER WATCH HER SHOW! I'LL NEVER GIVE HERANY RADINGS UNTIL SHE GIVES US SUPPORT! I WOULDN'T MIND EMAILING HER AS YOU SUGGESTED, BUTI'M JUST NOT QUIT SURE WHAT TO SAY THAT WILL MAKE HER HAVE A HEART ABOUT THIS. MAYBE IF ITOLD HER I WAS BLACK, MAYBE SHE'D DO SOMETHING THEN! I'M NOT SAYING SHE'S PREJUDICE, BUTTHIS IS COMMONLY A CAUCASION CONDITION. BUT I'M BLACK AND MAYBE I COULD, WELL I DON'TKNOW. DO YOU HAVE ANY SUGGESTIONS?
CommentTo Lynn: I saw that Oprah show and the mention was very brief. She is a very smartwoman and does alot of good. I think Vulvular Vestibulitis and Vulvodynia are too specificfor her to dedicate an entire show. I'm sure she is up to speed on what they mean butuntil there is more to discuss in the way of cause and treatment I think she will pass.The fact that you are Black and this is a disease that seems to hit fair skinned womenmore probably would not have a big impact on Oprah. I have watched many of her shows andlike I said she does alot of good, sends out the message to love yourself and take care ofnumber one. I don't see any harm in expressing your thoughts on this but unless she got atremendous responce I think such a show is somewhere in the distant future. I'm stilltrying to pursuade my wife to see another Gyn, we are lucky to have health benefits and Ican't see any harm in getting another opinion once a year.Hey good luck and keep up thegood work.
CommentI agree Oprah does a lot of good but I do not agree that Vulvodynia and Vestibulitisare too specific to do a show about. Check out the site www.vulvarhealth.org and look atthe vulvar disorders. That information is enought to provide data for more then 1 hour oftelevision. And this disease effects hundreds of thousand of people, not just the womenwho suffer from it but their friends and families. Oprah's shows deal with a lot ofspiritual issues and vulvodynia preys on our spirituality. We need help getting the wordout to the general public as well as the medical field if we are going to find effectivetreatments. I think we should all email Oprah as well as any other person we feel couldhelp us with this cause. Maybe if enough emails are received they will realize how manywomen suffer with this and how widespread this condition really is. I for one am off toemail Oprah again.
CommentI am a 30 year old woman that has lichen planus. I too suffer like everyone else. Itseems unexplicable that there is no remedy. I have been internal and external steriods,estrogen cream, as well as hydrocortisone. Nothing rectifies the problem. It has beenrecommended that I get my glands removed and have reconstructive surgery. l would greatlyappreciate the names of doctors that have successfully performed this surgery. You cancontact me directly at my email address. THANK YOU!
CommentTO LYNN I have used the Vanicream before with no relief. I have been considering surgery toshorten my labia minora because they are quite long and may be a cause of moistureretention and no air getting to affected areas. When I was younger I thought that my labiawere like that because of something I had done, but then found that many women haveelongated labia. I don't have constant pain, or pain with sex, only when I have thiserosion of the skin and get these 'tears'. Any more advice or information from anyonesuffering from similiar symptoms would be greatly appreciated! Thanks, Karissa
CommentHi everyone! these messages are for Diane and Karissa; Diane- I think your comment andsuggestion was good. Tell me, what is Oprah's Email address. I'll write her. Karissa- Imust admit that I'm shocked to hear that the Vanicream has not worked for you. Let me tellyou real quick, When I started using it, it only took 1-2 weeks for me to feel better. Iswear to you, I believe it's my savior! I have not suffered from the tears and itchynessand all that for 6 months now. I use to put it on everyday, but now I only put it on everyother day. But I guess we all are diffrent right? What works for me may not work for youand vice versa. But I will still recommend it to anyone out there who suffers. Take care.
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CommentHas anyone considered that milk has something to do with vulvadynia? I consume lots ofdairy and although I have no problem with dishcarge or yeast, I was wondering if perhapsmilk products could be causing this pain. Any comments, please respond. Thank you!
CommentI have experienced a condition known as lichen schlerosis since the end of 1994. Thatsame year I began working in the medical field and was given the hepatitis b and tetanusshots. I experienced a pretty severe local reaction on my arm to the hep b shot -- agrapefruit size swelling, very itchy lasting about a month. Nothing else major changed,other than the fact that I was married earlier in the year. I always try to relate theonset of disease to a lifestyle change. Every facet of my life has been affected from the incessant itching that leaves me verysore, burning, torn, small white lesions on the clitoris and inner labia. The skin isthinned, scaling, dry and I lack lubrication. It is painful to have sex and I have reallyvery little desire anyway. No doctor has ever mentioned a co-existing condition ofvulvadynia or vulvar vestibulitis with the lichen schlerosis. It just seems obvious afterreading what other women are experiencing, that this is what I have too. I have been tonumerous doctors, including a vulvar dermatologist in Buffalo. The recommendation has beentopical steriodal treatment which did not address the condition, and with which I feltvery uncomfortable anyway. I have been tested for every STD and yeast and bacterialinfections, none of which come up with a definitive diagnosis. I also had a cone biopsydone of the vulva (because of a darkening of the skin) which came back questionaldiagnosis of human papiloma virus. With having experienced very little help from traditional allopathic medicine, Iresorted to going to a naturopath, nutritionist, homeopath. I found intermittent relieffrom modifying my diet (cutting out acidic, yeast, dairy, refined sugars, coffee),homeopathic remedies, and applying acidophilus directly to the skin and inside vagina. Ihave tried to maintain a nutritious diet and take vitamin supplements, especially vits b,c, e and acidophilus, as well as anti-oxidant support and and omega 3 oils. Duringparticularly bad flare ups I apply vit e directly to my vulva as well as homepathic salveof calendula. These do alleviate the symptoms and bring some relief, so do baking soda orcolloidal oatmeal baths. Still I would like this condition to go away just as fast as it suddenly came. And whydo I have it as well as so many other woman and there seems to be no decisive answer fromthe medical community? Interestingly, during my two pregnancies, 1997-98 and 2000, the itching and sorenesscompletely subsided. My vulva came "alive" again. It was plump, healthy, full ofblood. My sex drive increased and I experienced no painful sex. But at the three monthmark after my first pregnancy, my husband and I had intercourse, using a latex condom withspermicide, and within hours the condition was back. Just recently (about a month after mylast birth in Dec 2000) the itching came back with a vengeance. I seem to itch worse whenI feel stressed and overwhelmed from my busy days with the baby and my toddler, and when Iurinate, the urine burns my vulva intensely. Has anyone else out there experienced a remission of the symptoms during pregnancy??? Iwondered if maybe in my case it is hormone-related, and I was thinking possibly it has todo with a reduction of progesterone. I have considered doing natural progesteronereplacement therapy (derived from wild yam). I have some concerns though because I ambreastfeeding. Thank you all for sharing your stories. This is a horrible dis-ease we are experiencingand it definitely requires greater medical attention.
CommentI have experienced a condition known as lichen schlerosis since the end of 1994. Thatsame year I began working in the medical field and was given the hepatitis b and tetanusshots. I experienced a pretty severe local reaction on my arm to the hep b shot -- agrapefruit size swelling, very itchy lasting about a month. Nothing else major changed,other than the fact that I was married earlier in the year. I always try to relate theonset of disease to a lifestyle change. Every facet of my life has been affected from the incessant itching that leaves me verysore, burning, torn, small white lesions on the clitoris and inner labia. The skin isthinned, scaling, dry and I lack lubrication. It is painful to have sex and I have reallyvery little desire anyway. No doctor has ever mentioned a co-existing condition ofvulvadynia or vulvar vestibulitis with the lichen schlerosis. It just seems obvious afterreading what other women are experiencing, that this is what I have too. I have been tonumerous doctors, including a vulvar dermatologist in Buffalo. The recommendation has beentopical steriodal treatment which did not address the condition, and with which I feltvery uncomfortable anyway. I have been tested for every STD and yeast and bacterialinfections, none of which come up with a definitive diagnosis. I also had a cone biopsydone of the vulva (because of a darkening of the skin) which came back questionaldiagnosis of human papiloma virus. With having experienced very little help from traditional allopathic medicine, Iresorted to going to a naturopath, nutritionist, homeopath. I found intermittent relieffrom modifying my diet (cutting out acidic, yeast, dairy, refined sugars, coffee),homeopathic remedies, and applying acidophilus directly to the skin and inside vagina. Ihave tried to maintain a nutritious diet and take vitamin supplements, especially vits b,c, e and acidophilus, as well as anti-oxidant support and and omega 3 oils. Duringparticularly bad flare ups I apply vit e directly to my vulva as well as homepathic salveof calendula. These do alleviate the symptoms and bring some relief, so do baking soda orcolloidal oatmeal baths. Still I would like this condition to go away just as fast as it suddenly came. And whydo I have it as well as so many other woman and there seems to be no decisive answer fromthe medical community? Interestingly, during my two pregnancies, 1997-98 and 2000, the itching and sorenesscompletely subsided. My vulva came "alive" again. It was plump, healthy, full ofblood. My sex drive increased and I experienced no painful sex. But at the three monthmark after my first pregnancy, my husband and I had intercourse, using a latex condom withspermicide, and within hours the condition was back. Just recently (about a month after mylast birth in Dec 2000) the itching came back with a vengeance. I seem to itch worse whenI feel stressed and overwhelmed from my busy days with the baby and my toddler, and when Iurinate, the urine burns my vulva intensely. Has anyone else out there experienced a remission of the symptoms during pregnancy??? Iwondered if maybe in my case it is hormone-related, and I was thinking possibly it has todo with a reduction of progesterone. I have considered doing natural progesteronereplacement therapy (derived from wild yam). I have some concerns though because I ambreastfeeding. Thank you all for sharing your stories. This is a horrible dis-ease we are experiencingand it definitely requires greater medical attention.
CommentI have experienced a condition known as lichen schlerosis since the end of 1994. Thatsame year I began working in the medical field and was given the hepatitis b and tetanusshots. I experienced a pretty severe local reaction on my arm to the hep b shot -- agrapefruit size swelling, very itchy lasting about a month. Nothing else major changed,other than the fact that I was married earlier in the year. I always try to relate theonset of disease to a lifestyle change. Every facet of my life has been affected from the incessant itching that leaves me verysore, burning, torn, small white lesions on the clitoris and inner labia. The skin isthinned, scaling, dry and I lack lubrication. It is painful to have sex and I have reallyvery little desire anyway. No doctor has ever mentioned a co-existing condition ofvulvadynia or vulvar vestibulitis with the lichen schlerosis. It just seems obvious afterreading what other women are experiencing, that this is what I have too. I have been tonumerous doctors, including a vulvar dermatologist in Buffalo. The recommendation has beentopical steriodal treatment which did not address the condition, and with which I feltvery uncomfortable anyway. I have been tested for every STD and yeast and bacterialinfections, none of which come up with a definitive diagnosis. I also had a cone biopsydone of the vulva (because of a darkening of the skin) which came back questionaldiagnosis of human papiloma virus. With having experienced very little help from traditional allopathic medicine, Iresorted to going to a naturopath, nutritionist, homeopath. I found intermittent relieffrom modifying my diet (cutting out acidic, yeast, dairy, refined sugars, coffee),homeopathic remedies, and applying acidophilus directly to the skin and inside vagina. Ihave tried to maintain a nutritious diet and take vitamin supplements, especially vits b,c, e and acidophilus, as well as anti-oxidant support and and omega 3 oils. Duringparticularly bad flare ups I apply vit e directly to my vulva as well as homepathic salveof calendula. These do alleviate the symptoms and bring some relief, so do baking soda orcolloidal oatmeal baths. Still I would like this condition to go away just as fast as it suddenly came. And whydo I have it as well as so many other woman and there seems to be no decisive answer fromthe medical community? Interestingly, during my two pregnancies, 1997-98 and 2000, the itching and sorenesscompletely subsided. My vulva came "alive" again. It was plump, healthy, full ofblood. My sex drive increased and I experienced no painful sex. But at the three monthmark after my first pregnancy, my husband and I had intercourse, using a latex condom withspermicide, and within hours the condition was back. Just recently (about a month after mylast birth in Dec 2000) the itching came back with a vengeance. I seem to itch worse whenI feel stressed and overwhelmed from my busy days with the baby and my toddler, and when Iurinate, the urine burns my vulva intensely. Has anyone else out there experienced a remission of the symptoms during pregnancy??? Iwondered if maybe in my case it is hormone-related, and I was thinking possibly it has todo with a reduction of progesterone. I have considered doing natural progesteronereplacement therapy (derived from wild yam). I have some concerns though because I ambreastfeeding. Thank you all for sharing your stories. This is a horrible dis-ease we are experiencingand it definitely requires greater medical attention.
CommentTo the woman who asked if anyone thought it had something to do with dairy products,what is your reasoning? I've never really considered that before. All dairy products arelow on the oxalate list so I presumed that they were safe (though it seems nothing issafe!). My other comment is although I haven't had children, I have had a remission of painbefore. Before I met my husband, I had been without a sexual partner for about 1 1/2years. I never used to have pain when I did "it" myself. When I first met myhusband, we had painless sex for about the first three months we were together. And thenthe pain started back again. It was always more of a discomfort rather than pain until Ihad the LEEP done. It's been downhill from there! Now EVERYTHING hurts. My specialistdiagnosed me with vulvar vestibulitis. I don't have the itching on the outside of thevagina as many of you complain of. My pain is all internal. So running and otheractivities aren't painful for me. I think it is bad enough, the strain between my husbandand I due to lack of intercourse, let alone what many of the rest of you are dealing with.I hope we all get help soon. Lots of love and hope! Christi Also, I would like to have Oprah's e-mail address too. I didn't get to watch her show,but I want to help be the voices that made everybody stop and see the truth. It's NOT inour heads!
CommentFor those of you wanting to email Oprah I have included the information. I hope youwill email her and get as many other people as possible to do the same. The more emailsshe gets, the more apt she is to do a show regarding this issue.
CommentChristie, What is LEEP. I have never heard of it. I was getting much better and now Iam inflammed again. This is so awful! I am sick of it!
CommentJust a quick message to all the folks who will E-Mail Oprah. Lauren atVulvodyniapain@aol.com made a good suggestion. She said that E-Mails can easily be deletedso a real letter mailed the old fashioned way may have more of an impact. I'm going tosend mine soon and request that Oprah reconsider and do a show on Vulvodynia, maybe withher influence some meaning research will be done. The address is Harpo Productions P.O.Box909715 Chicago, IL 60690 Don't suffer in silence, express yourself, write to Oprah.Thanks.
CommentFran, LEEP stands for Loop Electrosurgical Excision Procedure. It is for women who haveabnormal cells in their cervix which can lead to cervical cancer. They use an electricalcurrent to basically burn the cells and scrape them out. I have had pain during intercourse for 6 years and I just had the LEEP done about 8months ago. It shouldn't have anything to do with my pain because the procedure is doneway up in the cervix and my pain is at the entrance of my vagina. My old doctor put me onantibiotics after it because I had an infection. I know one woman suggested that all of uswere on antibiotics and that may be what stemmed all of this. But I had never been onantibiotics before and, like I said, have had pain for 6 years. So for now, it's elavil, calcium citrate, and the low oxalate diet for me. Thanks forall the Oprah info. I'm going to try both! Best wishes Christi
CommentEvery OB/GYN I went to told me I just had sensitive skin. My husband is a military man& the base hospital told us that my complain |