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CommentWelcome to the thirteenth vulvodynia guestbook and a thank you to all for yourcontinued participation and willingness to share your experiences with each other.
CommentWell, here is another book. I want to personally say thank you to all who havecontributed to this, for my own sake. This sight has helped me more than any other sightthat I have found. Good luck to each and every one of you and kudos to the men that areinvolved in our lives. They desirve it! Thanks--------Crystal--------
CommentHave any of you had problems with the skene glan?,I was told I have a cyst on the glan.I did acupuncture and herbs inserted with a tampax. I was pain free for 6 monthes. Now thepain has returned, I am receiving acupuncture and it is helping,however not 100%. Thefirst incident, I saw a urologist, the first time he diagnosed my problem, vaginal pain,as a cyst on a skene glan. After one month treatment from my acupunturist. I went back tothe urologist for a follow up and they said the cyst was gone. So, for 6 months I was painfree. Now the pain is back , not as bad. I need to hear from anyone else on this. Also Iam using my own salve of St John's wort oil and calendula oil combined with beeswax. Thisis suppose to sooth nerve tissues. Really seems to help. I make it myself. If anyone wantsto order any from me. I am selling salves and cremes made from herbs. $15.00 for 2 ounces.Thanks Vjmoon
CommentHi again fellow sufferer's. I'm just wondering for those of you who have mostlyitching. Do your symptoms seem to be worse in the afternoon, evening and at night time.After I get up and take my shower (previously using regular soap) in the morning theitching doesn't usually bother me until the late afternoon--unless I'm having a really,really bad day. It sometimes wakes me up at night though--when it's definately at it'sworst. I'm trying to think what might make it worse as the day goes on. Anyone have anythoughts?? Teri
CommentI just found this information and I feel like I need to sit here long enough to readevery printed item on the subject. I've had this problems for years and have been treatedbasically for all kinds of things, basically with very little relief. It always comesback, it affects my joints all over my body in addition to the specific area noted. Irecently got into a clinic at the Washington Hospital Center and have just started thetherapy program. I am ecstatic to find a support group of this type and hope to find somerelief here too. Thank you very much! M.D'Angelo
CommentHi ladies. This is the first time I am writing in so I hope I do it correctly. I havesuffered for over 8 years with vulvodynia. After lengthy discussion with a RheumotologistI have become friendly with, I really think I have the possible answer, not cure, to whatis causing our problem. Let me first say that this is directed at vulvodynia sufferers whoare actually red in the areas that hurt. Look at yourself with a mirror, there should beincreased redness in the area that is closest to the entrance of the vagina, and possiblyup to the clitoris. Most likely the redness is not as severe or nonexistant on the lips ofthe vulva farthest from the vaginal opening. I have firmly believed that this is actuallya STD. It is unidentified, or considered normal flora when it is actually not normal.Chlamydia was considered normal flora not long ago. I used to think it was a tissueinfection of the vulva. Now, I believe that our discharge is full of interleukins.Interleukins are part of our bodies defense mechanism, rather an integrel part of theimmone system. For instance, interleukin-1 is associated with fever. Another example morerelavant to our situation is when a women gets Toxic Shock Syndrome (TSS), an abundantamount of interleukins are produced. They actually cause horrible symptoms in themouth---far away from where the infection originated--the mouth sores are one of the firstsigns of TSS. I believe our infections are in the vagina, uterus, fallopian tubes, urinarytrack, etc. The discharge, and possibly our urine has these interleaukins and it causesirritation and inflammation. That is why the vulva has such a specific pattern of redness,it is where discharge sits. If you have visible discharge on your vulva when you look atit, take note of whether or not it is right where you hurt. Or during your period, look atwhere the blood sits. I think this is why rinsing yourself when you have your period orafter you urinate can significantly help. In fact, when I was at my worst I had to weartampons. The blood and whatever else was coming out of me was very painful. I had doctorssuggest not using tampons, but honestly it was way better with them. I suffered from painaround my anus too. I was taught very well when I was a little girl to wipe from front toback. I probably smear the interleukin filled discharge (it doesn't need to be excessivedischarge) from my vulva back to my anus every time I wipe. My suggestion is this, rinseevery time you urinate, soak in a tub at least once a day for at least five minutes (ofcourse don't use bubbles), do not use bar soap use liquid, try using tampons daily(changing every 4 to 6 hours as recommended) to stop the discharge from getting on thevulva. Within 4 days you should feel a significant difference. I will tell you that I feel98% better on certain antibiotics: augmentin and doxicycline, and the combination ofaugmentin and flagyl together is miraculous, almost all of the redness goes away, I becomearoused, everything works properly. The problem is I have not found the perfectcombination to cure me. If you have a sexual partner there is the added problem that hemay be infected too. Try my suggestion for a few days. I am very interested to know ifpeople have success with this, please email me. I do not visit this website much becauseit breaks my heart, and stirs up my rage with the medical establishment. Jennifer
CommentI also have been suffering from vulvodynia for 6 years now ,but only found out lastmonth what was going on with me. I thank GOD for my best friend who found this site.I havebeen to see 5 doctors who had no answers for all the pain I was having . Now even though Ihave sadly learned that thier is no cure, I can only pray for a little relif. Is theiranyone in the Atlanta area who is suffering from this ? PLEASE CONTACT ME !! THANK YOU!
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CommentComments: MY FIRST VISIT HERE I have come across the term vulvodynia only 4 days ago, when I read a short article inthe "Prevention", July issue. It correctly described my symptoms, and Iproceeded to check out the website of the NVA, and read all your wonderful information,Dr.Glaser. Thank you! Many items describe my symptoms and I am so glad that there is a"name" for it, my OBGYN was no help when I saw him a year ago. However, I sawhim again today, and brought him some of the information about the condition which Iprinted out for him from the websites. But of course, he gave me very little of his time.He did, however, take a smear and will let me know his findings. I am 52 and have had recurrent yeast infections since my early twenties, with longperiods of remissions, primarily during my two pregnanies. 2 years ago, I had alaporoscopically assisted vaginal, bilateral salphingo-oophorectomy. Since then, I havebeen on premarin, estrace, and now the climara patch. It was my hope, that my yeast wouldend with the hysterectomy. I also started a low carbohydrate, increased protein diet 6months ago (NO SUGAR). However, for about a year now, I am having recurring, at least1x/month, sometimes more frequently, burning, itching and inflammation around the vulva,but no yeast-like discharge. Using Monistat takes it away, but it always returns within acouple of weeks. There seems to be no relationship to sexual activity, hygiene, stress,diet, etc. Could I have developed a hypersensitivity to Monistat? I am also using aloavera gel around the vulva, and sometimes Premarin cream to control the burning anddryness. My OBGYN gave me a prescription today for Diflucan and Maxiflor cream. I will letyou know what develops, in the meantime, thanks for this great website, I'm just beginningto explore it!
CommentRe:vjmoon and Teri.....first of all I would like to address the issue of vjmoonsoliciting on this site-shame on you! If you indeed have discovered something that willhelp others and it's a home-made recipe,why not just share that recipe with others at nocost? teri-hi...hope you feel better soon.I always suggest to others to NOT takebaths....AT ALL No matter how clean you think your tub is-there is till going to beresidue of some type that can and will get in and on the vaginal area.I loved my bathstoo-so I must say it was quite disconcerting to me to give them up for showers.But I'm nowused to showering instead and believe me it has made like 100% difference.I also don't usesoap on the vaginal area AT all.After urinating if you will take a bottle of water andspray the area instead of wiping with tissue,that seems to help a lot.Be very careful ofthe type washing powder you are using and if you can-rerinse your clothes.Make sure yourwasher is working properly too.It never occurred to me that mine wasn't.But after gettingmy VV pain under control for over a year(doing the things I suggested to you) it suddenlyflared up again.I wasn't sure why...well after a couple of weeks I went to my washer whileit was going and happened to open the lid and it was not agitating.I was shocked.So whatI'm getting at is-if the washer isn't properly agitating and getting the clothes washedand rinsed correctly then there is sure to be a residue on them.And of course as any othersufferer will tell you-avoid underwear when at all possible.Especially on days theitching,burning,pain,etc. are bothering you.Long dresses and skirts are now my fashionstatement.If I do wear shorts,I limit the time I have them on...same for slacks.I wore apair of shorts for just a short time a few days ago,and they were not tight or of a ratherreal short cut either,and in just a few minutes I could really feel the pain beginning.It's unfortunate that we endure this but until "something" else comes along wemust continue to be a support for each other and do the "trial and error" thingto see what does or doesn't work for each individual.
CommentIn response to Jennifer's comment on 6/15/00. I hope that this is not an STD. I've beentested over an over again, for every STD known to man. It scares me to think that thiscould have been given to me by someone. Although, how could it be an STD if vulvodyniasymptoms can present themselves even during adolescence? However, your idea about thedischarged sounds logical. I don't know. I feel so depressed about this problem. Idefinitely don't want to go back to thinking that I do have an STD, or HIV, etc. I don'twant to have to test over and over again, nor go through the turmoil of waiting forresults. I guess I just have to do what works best for me.
CommentI would like to second what RG said. It is insulting enough having corporations postloosely disguised soft-sells ("showing my husband I'm a woman again," etc.) butto offer an actual product, up front, on a free site is ridiculous and is probably illegalsince if someone had an allergic reaction and sued you, the owners of this site would alsobe liable. Oh, and by the way, fellow sufferers, is anyone interested in a used BMW? Howabout a sublet?
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CommentDoes anyone like me have terrible bladder pain as well as vestibulitis?Istill have theV.V but the bladder pain has been enormously improved with a therapy called Total BodyModification.I Received this in England but believe it to be widely available inAmerica.See internet for contact numbers. Hope this helps somebody else.
CommentI have recently been diagnosed with Vulvodynia at the age of 20 but have had it since Iwas 16. I am still in the early stages of treatment. But if it weren't for this site Iwouldn't have known anything about it. It has been a great source of knowledge. And I wishluck to anyone out there with Vulvodynia.
CommentHas anyone sued their HMO for Bio-feedback and pelvic floor muscle rehab and won? I'mhaving a difficult time with my insurance and medical group. They referred me tocounseling to solve this problem. I'm really disgusted that someone in such pain shouldhave to go through these additional problems with getting proper health care. If you have the name of a good attorney let me know Karen K
CommentI was diagnosed with vvd 8 years ago. I am 31 and still live with pain. I have triedeverything from medications to physical therapy to creams and the list goes on. I ambetter then I was several years ago and I never give up hope. I have a doctor that triesto help as much as possible. I just stared using the estrace cream to see if it would workfor me. I saw that some woman in the guest book where using it so I thought I would giveit a shot. Like many other woman it took awhile to find out what was wrong with me andwhat to do about it. through the years I have gone from feeling really bad to not so badand back again it feels like a roller coaster most of the time. I have a 21/2 year old sonand my husband which has been pretty supportive through this terrible diease.I pray everyday for a cure. It really helps to see I'm not alone with this awful painful diease,Inever new there was so many women in the same boat as me please feel free to e-mail, me Ihave never talked to anyone else with this diease before. Thanks for listening.
CommentJess, I do not think you should have more STD testing. The STD's they test for are notwhat you have. I believe they have either not isolated the right bacteria yet, or they areconsidering a pathogenic bacteria to be normal flora. Chlamydia was thought to be normalflora in the vagina up until 15 years ago. Dr.'s thought stomach ulcers were due tostress, and spicy food. One particular doctor said for YEARS that he was curing hisstomach ulcer patients with antibiotics, no one in the madical establishment wanted tobelieve him, because there was no PROOF. Finally, a study was done and they isolated H.Pylori. Now, it is believed that 80% of ulcers are caused by this bacteria. When you havea standard culture done at the doctors office they don't grow the anaerobes. Anaerobicbacteria is what I feel is the culprit. That is why many women feel better on doxicycline.The women that complain that they developed vulvodynia after taking long-term antibioticsI believe were infected all along and the antibiotic was keeping the bacteria at bay. Likewhen teenagers take tetracycline for acne. As I said in my original posting I do not havethe cure. Although, I believe it is bacterial, I don't know what drug, how many times aday, for how long. It is just that I am afraid this possibility is being sorely overlookedby the medical establishment. If you ever feel as though you want good bacterial culturesdone see Dr. Attila Toth in N.Y.C. He has a lab on the premises that is very wellrespected. His number is 212-717-4444. He believes that this could be caused by infection.He is primarily concerned with fertility, but he is an OBGYN and an Infectious Diseasedoctor. Also, I wanted to say again that this is directed towards people with redness andirritation at the entrance of the vagina primarily. If your vulva pain is due to a muscleor nerve problem you would most likely not have these symptoms, and the biofeedback andexercises are probably effective for you. Jennifer
CommentWow!! I finally have a name for this terrible pain that has had me incompacitated forover 2 years. I have not been able to sit at work, have intercourse or function normallyfor so long. I have been tested for STD in the world , multiple times. Each time the testsare so painful because of the exam. Has anyone had this condition arise from the use of an over the counter yeast infectionmedicine? I can track the onset of this back over 2 years ago to a day that i usedVagistat to treat a yeast infection that had me climbing the walls. After using themedication, I wanted to scream it hurt so much. I was out of work for 3 days and havenever been the same since. Since that time, i have had recurring pain, bacterialinfections, yeast infections and basically complete trauma to my entire vulvar/vaginalarea. I finally went to another doctor this past week and she diagnosed me within 2 minutesbeginning the exam. I have just started using the lidocane and have taken one dose of theamnitriptolene. I hope that this helps. Does anyone know about the effectiveness of the low oxiant diet? This is all new to me,I hope you can help me gain some insight. I just want it to end and get back to my life. Thanks.
CommentI never hear of anyone talking about perineoplasty surgery. Has anyone else besides meheard of this? I am having this procedure done on 7-13. I will let everyone know how itturns out.
CommentFollowing the Low Oxalate Diet and taking Lorazepam for the burning pain helps me. Tryit! It may work for you.
CommentThis a very interesting site. I have suffered for 8 years with this affliction. Myinternist asked me to research it so that, I can provide her with valuable information ontreating my pain and soreness. I look forward to trying some of the treatments.
CommentHI TERI!! You know, I do think we are the only people on this guestbook who sufferprimarily from itching. ANYONE ELSE SUFFER PRIMARILY FROM ITCHING?? Have you ever brushedup against stinging nettle? That's what I feel like all the time externally. Anyways. Ijust wanted to throw something out there... I have had this since elementary school, atleast fifteen years. I treated myself since no one would take me seriously, probably fromfourteen years old to 22 years old with over the counter stuff. Nothing changed much, Iused o.t.c. creams, vaginex, vagisil, etc. These helped immensely. At 23 years old, (I'm25 now), I went to a specialist in vvd. They told me to stop what I was doing and gave mesome other treatments. After over a decade of no changes in my symptoms, after using whatthey gave me, things got worse!!! How many of us actually get relief from the medicalworld and how many of us end up worse? Just curious. I also wanted to say I have an awesome ob/gyn office I go to. It is so nice to have amedical staff who takes me seriously. They are not who I see for vvd, I see them for theregular stuff. It is so nice to get sympathy from a doctor/nurse instead of condemnationor disbelief. I found out there is another patient there who has vvd. I told thenurse/midwife who I've been seeing to refer her to this site. I hope she finds it. This site is so bittersweet. I treasure all you ladies out there. Although we've nevermet, we've been through a lot together, if you know what I mean. How about next month orso, someone posts an entry with a cure for us all. Wouldn't that be heaven... Sometimes Iget so depressed. You'll have to excuse this silly entry, I'm sitting here at my keyboardwith tears running down my cheeks, sipping a gin and tonic trying to take the edge off theitching so I can sleep later. This is unlike me, I can usually cope really well. I'm justso sick of it. I feel so hopeless now. I've got a lot of years left (hopefully) and Idon't want to live them like this. I'm young! I'm supposed to be running around with mybaby having fun! I want a big family, but will I be able to handle all the activity andbusy-ness that comes along with that? I want to play with my baby boy, I want to take himon bike rides, or at least long walks to the park. I want to take him to the beach in thesummers without my bathing suit killing me down there. I want to be able to make love tomy husband anytime I want. I want to be able to go camping and hiking with my husband.It's his dream to take me to the Adirondak (sp?) mountains for a week and rough it. And asmuch as I appreciate this site, I don't want to spend all my nights desparately searchingfor help. I want my life to be normal. Today was a bad day, can you tell? The itching ishorrendous. It hasn't ceased at all today. We visited my in-laws today for father's day.It was bad, I laid down on the sofa almost all day. My mother in law knows about this, sheis a wonderful mom-in-law and friend whom I love very much. She was happy to tend to mybaby so I just rested and sat still, which was nice, but i would rather have been playingwith them. Well, now I have been rambling... I'm afraid I'll be emberassed when I read thistomorrow. Oh well. Thanks ladies for letting me vent. I better end this post and get tobed. Mornings here come early lately. My eleven month old thinks he needs to wake up withthe sunrise. Thank you all for your understanding and support.
CommentThis is in regards to Rebekah, I too have suffered for 8 years. Yse, it is a day by dayexistence, and you have to be brave. I have had so many surgeries, creams, yeast meds,which I am again on and which by the second day I swear I WILL NEVER USE AGAIN. I is likea merrygo round..... I have used testosterone creams, Efudex at the beginning....nothing helps....except icepacks at night. I am so glad I found this sight...I too believe that there is something inthe discharge that has irritants present.
Commenti wanted to find out whether anyone out there had tried taking a tricyclic calledsomething like dothiapine (i can't quite remember the name!) or other tricylics, andwhether they were helpful. i've been taking 50mg / day for nearly two months, and the onlything that seems to be happening is i feel a lot more tired and have really weird dreams! i also wanted to know if anyone else finds their pain is affected by what they wear. iusually only feel pain on penetration, but if i wear poly/cotton sweat pants or othersynthetic fabrics (even with cotton underwear) i start to burn. does this happen to anyoneelse?
CommentRe: Rebekah(sp) I'm so so sorry you are having such a bad time of it. I've been theretoo.Never feel ashamed to post what you feel..I'm sure we all can relate.Don't give uphope either. I too go through times when I feel like just giving up.....but then I have aperiod of time when I feel better and I really appreciate the good days.Have you read asmany of the past guestbooks as possible to try and find a solution that perhaps some of ushave tried? When I first found this site...I read every single post. Of course at thattime..I believe there were only 3 guestbooks.Wow-look how many more have been added ....itboggles the mind that there is so much suffering going on with this awfuldisease/disorder......whatever we call it.But-really-try to go back and read everypost....surely someone has posted "something" that could help you. Hope you feelbetter....mentally & Physically very soon.
CommentHello ladies, Thank you for your encouragement. I usually don't break down like that, I'm a prettystable person, but yesterday was tough. Today was much better and I'm back to myselfagain. I appreciate all of you so much! Rebekah
CommentRe: Rebekah......good-glad to know you feel some better today. Been there-donethat....Many times.Some days,when the pain has been tormenting me I feel so incapable ofhandling anything and just want to give up. I'll be thinking,"How much longer can Igo on this way????" This too shall pass though,and I'll have a LOT of good days.I'venow really come to appreciate the good days.I continue to think of this disorder as beingcompletely unfair....I thought after having my kids,raising them, having ahysterectomy,that all the good times lay ahead for my husband & I.I was never a sexfiend by any stretch of the imagination....but hey if we want to have sex with ourhusbands-should not we be able to???? Also I guess I stay a bit pissed at the AMA becauseladies we know in our hearts that if this were a problem affecting MEN-the AMA would notstop till a cure was found.When those d*** Viagra commercials come on TV-I leave the roomor turn the channel....they get me soooooo peeved.
CommentHi Ladies, Was wondering if any of you ever used a cream like benedryl that you appliedto the area directly. I know that some have tried allergy pills. But I never see or hearthe question of using the cream directly on the vagina. I don't even know if it exists butI know they have a spray. I have tried so many things, and you all know I go to acupunturetreamtments and I take herbs and I think they help. But I still have pain and swelling,some days worse then others. And I was wondering if this method was tried and if there wasany relief felt from it. Lauren
CommentHi Ladies-I would like to know how many of you would be interested in contributing to afund that would allow us to place a large ad. in a medical journal that is very popular inthe medical community. (As well as placing an ad. in a national newspaper.) I am thinkingabout an OPEN LETTER type of ad., that expreses our "outrage" at being virtuallyignored in the research community, and well the entire medical community. I don't have adraft set up yet, so the correct words would have to be drawn up at a later time. But someof us that talk via email on a regular basis have been discussing this possibility. Whatis definetely necessary however is posting of names at the end of this letter and thecities you are from. No address's or phone numbers or email address's either. But you mustbe willing to use your full name. This is a serious matter. Please let me know what you think. I think there are enough of us out there that evenif each only contributed $1 we would raise enough capital for this ad. Please send me your thoughts ASAP. Lauren
CommentHi Ladies. I placed an entry in the 12th guestbook on 5 June detailing all my symptomsthe treatments tried and the failures which resulted. I also mentioned how I am now tryinghypnotherapy to help deal with previous stresses in my life (obviously including the vv).Well, I have only had one session recently, my next will be on 30 June, and I feelwonderful. My love-making with my husband has been pain free and I reach orgasm easiereach time. I'll keep my entry short and sweet this time as I know there's lots to read onthe guestbooks. From what I have read recently a few of you have mentioned about how yourpelvic floor muscle/s are very tight and you're interested in massage to try and eleviatethe problem. Some have mentioned how stress increases the vv symptoms. I too suffered withboth these problems. Hypnotherapy relaxes your mind and body totally in a very powerfulway and has most definately helped me. I thought pain-free and enjoyable sex was a thingof the past, but to my delight it isn't. I feel so sad that you are all going from creamto cream or drug to drug, or even worse, contemplating surgery, or had surgery whichhasn't worked. Hypnotherapy is drug, cream and surgery-free, so why not give it a go? Somemay think there is some sort of stigma attached to this therapy, that it indicates it'sall in the head, but hell, so what, if it happens to work isn't that better than goingfrom doc to doc and treatment to treatment, continually not seeing any improvement. AndOK, the hypnotherapy may not be a permanent "cure", but if it means I need amonthly or quarterly "maintenance" visit, I'll take it. I feel so strongly aboutthis as I have finally found something which gets rid of my suffering. I hope you willgive it a try. All the best, ladies.
CommentI thought I might take this opportunity to share my good news story with everyone. Isuffered from what I believe was vvd since Christmas last year. It wasn't constant - itwould flare up just before my period and continue through it and a few days after. Ididn't know what to do. I had never been sexually active and never had so much as a yeastinfection before. I then did some searching on the internet and found this site. At firstI was reluctant to see a doctor as from what I'd read here many of them don't know whatvvd is and so I suffered until May. Finally then I told a friend and she convinced me to see my GP. She did some tests onme and could find no indication of infections. She hadn't heard of vvd but I gave her somearticles on it and the FAQ from this site and she said perhaps the best option to startwith was tricyclic antidepressents. So she put me on 10mg of amitriptyline and I alsostarted taking Vitamin E everyday and Evening Primrose Oil when I was pre-menstrual. This was in May and since then I've been more or less fine. 2 periods have come andgone with no pain. I don't know whether it's the amitriptyline or the supplements or justluck but all I care about is that my pain is gone. I have had 1 or 2 days where I've hadsome pain but it seems that if I take the EPO it gets better. I have had no side-effectsfrom the medication either as it's such a low dose and my doctor said that I can alwaysincrease it if I get more pain. Also she knows of another doctor here who specialises intreating vulvar and vaginal disorders so that's good. But the thing is - I can never feel completely cured. Everytime I feel even a twinge inthat area I think that maybe I'm coming down with another attack. And then I think that ifI think too much about it it may make it worse. But I'm just taking each day as it comesand enjoying the fact that for the first time in months I'm pain-free and don't have todread getting my period. I really hope that all you other women with this horrible condition find a cure for it.Awareness is the first step - don't be afraid to write to magazines or talk to doctorsabout it. The more people know about vvd the more likely it is that a cure will be found. Sorry for the extremely long post but as you can see I had a lot to say. :-)
CommentLauren, I would be willing to contribute money as well as my name and city to your ad.
CommentHi everyone. I have been reading through this web site for quite some time and I havefound it very helpful. I live in Ontario and I have been recently referred to a Clinic inOttawa. At that point I will be deciding if I want to have the operation or not. I waswondering if there is anyone else out there in Ontario who has had the operation and ifso, the results. Please e-mail me if you have any information that would be helpful. Thankyou.
CommentWORKED FOR ME. I have never viewed this website until today. I am glad I stumbled uponit. I am 28 years old. Approximately 5 years ago, I started with the symptoms ofvulvadynia. I don't need to tell all of you about the symptoms. But, the main symptomintense burning and redness in the vaginal area. I don't even remember when it began. Itseems like so long ago, I saw approximately 8-10 doctors. Over a course of approx. 4years, I tried every remedy. I tried bcp, topical and hormonal and vaginal creams,antianxiety and antidepressants, antibiotics, bath salts, physical therapy, TENS unit,dilators, douches, vaginal skin peels, oral and cream steroids, relaxation techniques,homeopathic physician, heat and cold applications, aloe vera, low oxolate diet, calciumcitrate, and the list goes on. One day (I was on St. Johns Wart everyday) I had a cup ofCHAMOMILE tea at a family members house. I noticed a decrease in my symptoms and told myhusband. Willing to try anything. I investigated the uses of Chamomile. I had to helpmyself, no one else did. I started by taking Chamomile 355mg capsules (2caps 3 times aday). I adjusted as needed until I was only taking 1 a day. This lasted a couple ofmonths. I don't know if this was it or not? But, I do not take anything now. I have beenpainfree for over 2 years. I always thank GOD for sending me whatever the cure was? Iremember begging for a vacation trip with no pain, intercourse with my husband, or beingable to wear a simple pair of blue jeans everyone takes for granted. I was there once,too. I pray for a cure for each and everyone of you who cry while the shower runs so yourhusband or boyfriend doesn't hear you. Thank you to all of the supportive family members,husbands, boyfriends etc. I did let the National Vulvadynia Assoc. know about my findingsyears ago. We are behind in technology and got the internet 2weeks ago. Thought I wouldlook this topic up. I will pray for all of you for a cure!!!!!!!!!!!!!!!!!!!!!!!!!!
CommentWORKED FOR ME. I have never viewed this website until today. I am glad I stumbled uponit. I am 28 years old. Approximately 5 years ago, I started with the symptoms ofvulvadynia. I don't need to tell all of you about the symptoms. But, the main symptomintense burning and redness in the vaginal area. I don't even remember when it began. Itseems like so long ago, I saw approximately 8-10 doctors. Over a course of approx. 4years, I tried every remedy. I tried bcp, topical and hormonal and vaginal creams,antianxiety and antidepressants, antibiotics, bath salts, physical therapy, TENS unit,dilators, douches, vaginal skin peels, oral and cream steroids, relaxation techniques,homeopathic physician, heat and cold applications, aloe vera, low oxolate diet, calciumcitrate, and the list goes on. One day (I was on St. Johns Wart everyday) I had a cup ofCHAMOMILE tea at a family members house. I noticed a decrease in my symptoms and told myhusband. Willing to try anything. I investigated the uses of Chamomile. I had to helpmyself, no one else did. I started by taking Chamomile 355mg capsules (2caps 3 times aday). I adjusted as needed until I was only taking 1 a day. This lasted a couple ofmonths. I don't know if this was it or not? But, I do not take anything now. I have beenpainfree for over 2 years. I always thank GOD for sending me whatever the cure was? Iremember begging for a vacation trip with no pain, intercourse with my husband, or beingable to wear a simple pair of blue jeans everyone takes for granted. I was there once,too. I pray for a cure for each and everyone of you who cry while the shower runs so yourhusband or boyfriend doesn't hear you. Thank you to all of the supportive family members,husbands, boyfriends etc. I did let the National Vulvadynia Assoc. know about my findingsyears ago. We are behind in technology and got the internet 2weeks ago. Thought I wouldlook this topic up. I will pray for all of you for a cure!!!!!!!!!!!!!!!!!!!!!!!!!!
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Commentgood morning my new friends.this site has given me new hope. I like so many of you havegone unheard not only by doctors but by the medical community as a whole. I have sufferedfor ten years or more from vulvodynia, I was told that it was the change of life.and learnto live with it?It wasn"t till I spoke with another nurse that I could pin point myproblems. I have been taking several homeopathic meds for hot flashes.and have seen yetanother dr. who started me on guaifenesin (mucus lossening med)worked best and no sideeffects. my own personal God send is gold bond powder triple action and the extra str. IPRAY THERE IS A CURE but till then us girls will stick togeather.and its ok to talk aboutit, please feel free to e mail me any time Im looking for diets low in oxalates g god
Commentgood morning my new friends.this site has given me new hope. I like so many of you havegone unheard not only by doctors but by the medical community as a whole. I have sufferedfor ten years or more from vulvodynia, I was told that it was the change of life.and learnto live with it?It wasn"t till I spoke with another nurse that I could pin point myproblems. I have been taking several homeopathic meds for hot flashes.and have seen yetanother dr. who started me on guaifenesin (mucus lossening med)worked best and no sideeffects. my own personal God send is gold bond powder triple action and the extra str. IPRAY THERE IS A CURE but till then us girls will stick togeather.and its ok to talk aboutit, please feel free to e mail me any time Im looking for diets low in oxalates g god
CommentThis is the first time I have added to the guestbook. I have emailed a few individualswho have noted symptoms similar to mine and hope that a few of you will read this and beable to add to what I have already learned. I am 25 and to be married in November.Fortunately, I have the most understanding and patient fiancee. In June 1999 I wasdiagnosed with vestibulitis/vulvodynia. I have tried all the same things with varyingsuccess, except amytriptyline which can possibly trigger dystonia ( a possible geneticdisease which my father has). In November 1999 I woke up with pain and swelling invirtually every joint of my body. The constant pain I endure from this is not nearly asbad as the initial flare-up. I have been tested for every connective tissue disease(lupus, scholderma etc.). All tests came back negative. So at this time I am told I have"polyarthritis". All of my doctors are aware of the other problem, however theredoes not seem to be a correlation. Has anyone had similar arthritis-like symptoms with VV?The VV makes it too painful to sit for long and the joint pain makes it difficult to getup and move around. If you have any information, please email me. Also, if anyone knows abiofeedback specialist in the NC area that would also be helpful. Thanks.
CommentHi ladies, Please help! Here I sit on a Saturday night, in tears, reading these stories by all ofyou. I've had this problem for 12 years and never been diagnosed til 2 weeks ago by anaturepathic doctor. Still, my concern is that I can't help but wonder if this is what Ireally have. My symptoms are very similar to what I have read, but no one has mentionedthat their problem occurs with having intercourse only. I guess I can look back over theyears and see that I may have had a flare up from out of the blue, but it mostly happensafter having intercourse or some kind of vulvar friction. I have the extreme itching,reddness, swelling which can last up to 3 weeks, and begins either during intercourse orby the next day. It's awfull and very uncomfortable. Is this the pain you all are talkingabout? I don't want to get my hopes up if I going down the wrong road. Thank you for yourhelp, Tracy
CommentHi Jennifer, I came down with my vvd in July of 1999 - just about the same time you did. I have donealot of research on the internet and it sounds like you have fibromyalgia. You may want totry the guia drug. I'm not sure if I'm spelling this right but several other women mentionthis at the end of the 12th guestbook. You should check out the fibromyalgia web site. KK
CommentTracy-my symptoms mostly DO occur after sex.Which is why my husband and I have NOT hadsex since March.As long as we don't-I'm mostly ok. Unless I wear pants or shorts for toolong.Or if I get constipated it seems as though the symptoms are there-but mild.The onlytime they are severe and for a Long period of time IS after sex.For me anyway.
CommentIn response to Ruth's entry - my vulvodynia started "right" after I usedMonistat. I had a yeast infection while on vacation and took Monistat. My burning thenflared up beyond belief and I just figured it was a bad yeast infection, since I am proneto them. However, upon examining myself I saw red splotches and even water blisters. Weran to the on call doctor and he told me I had herpes!!! He gave me herpes medication,even though I was in a 7 year monogamous and very loving relationship! He then told me to"keep using the Monistat", for he also said that I did have a yeast infection.He never once mentioned that I might be allergic to Monistat. 2 weeks later I developedvulvodynia, although I didn't know what it was, and a year later I still have it. I had ayeast infection this year and was desperate enough to try a Monistat app. (I hadn'trealized that I was allergic to Monistat) - 3 hours later I had blisters everywhere and Iwas red and swollen and in horrendous pain. I then put it all together - that I had had anallergic reaction back then and that was verified by my allergic reaciton this year! Ifeel like filing a law suit against Monistat, for this product should be much more closelymonitored!!!!!!!!!!!!!!!!!!!! I am serious. I feel like it is the silicone breast implantscenario all over. There is nothing on their paperwork that says excessive use or even oneapplication can cause irrepairable skin and nerve damage and can cause vulvodynia which isuncurable. How many of us are there that got this from yeast creams - over eitherprolonged use or frequent use or even one application that we had an allergic reaction to?The loss of ones quality of life, sex life, work life and life in general is not worth thecheezy yeast infection ads that act like their products are risk free. Women must bewarned and doctors need to know what the risks are. E.
CommentTo Tracy, I have had Vulvodynia for about 12 years now. My symptoms started as itching,burning and swelling after intercourse as well. It has since developed to pain evenwithout intercourse.
CommentI have been to more doctors than I can think of. I think I agree with the allergicresponse to Monistat that others have listed here. If anyone can e-mail me any otherinformation or personal stories about this, I'd greatly appreciate it. Mine started a fewdays after I started the medication. I think I may have some nerve damage. I live in New York City and I was wondering if anyone knew of a goodgynecologist/dermatologist in the area. Or maybe a doctor that specializes infibromyglidia? I've reached the point where I am trying to formalize my own treatmentbecause one doctor after another tells me nothing is wrong with me. I"ve alreadyspent close to $3,000 out of pocket between doctors and tests and I still have noimprovement. I'm starting to get depressed but I'm not ready to give up yet.
CommentTo Tracy: I have vestibulitis and only have symptoms during/after intercourse. If Inever had intercourse I would never know I had a problem! Keep in mind, we all havedifferent problems with vaginal pain.
CommentIn responce to my offering to sell herbal salve. I am an herbalist and have somethingto offer. However this is how I make my living. Anyone can do the research on how to makesalves. Herbal books abound. I wish more women would remember to support each other, thenmaking judgements on their intent. I offer this because it may help. You can alwayssupport the corporations, or a small cottage industry. However I am still looking for infoon cyst on the skene glan. Thanks VjMoon
CommentRe: vj moon- Peddle your wares elsewhere. I see Dr. Glazer had to put a disclaimer atthe beginning of his site now-thanks,I'm sure, to such solicitations. If I were him-Iwould delete every post you leave here.
CommentHello! After being diagnosed with vulvodynia my doctor put me on lidocaine andhydrocortisone. Obviously, these only covered up some of the symptoms and did not reallyhelp my problem. Before going on tri-cyclic antidepressants and possibly estrogen cream, Idecided to quit my birth control pills. I had been on birth control pills on and off sinceI was 17, for irregular periods. I am 23 now. Within 2 weeks of quitting my pills, therewas such a marked difference that I could have sex with my husband while experiencing onlyminimal discomfort. I have kept getting better. It has now been two months and I amcompletely pain free! Something I discovered was that my mother ,who is going throughmenopause, was on estrogen/progesterone therapy and experienced much of the same symptomsthat I had with vulvodynia. When she heard that I had quit my BC pills, she quit her pillsand is getting better also. At my diaphragm fitting, I told my gynecologist about quittingthe pills and she said she was surprised, since I had been on pills for years beforesymptoms occured. However, she admitted that allergic reactions could occur at any time.She was amazed at my improvement. The last exam I had was excruciating and I was sore fordays. I know that quitting BC pills won't work for everyone. I am offering thisinformation in the hope that it will help someone out there who is sensitive to birthcontrol pills and is suffering needlessly because of it! If you have any questions, feelfree to email me!
CommentI, too, only experience pain when I wear shorts or jeand that are tight or in thehours, and sometimes days after intercourse. Sometimes after sex it hurts really bad,burning, stinging, etc...etc..etc, but then again sometimes it just makes me sore. Thetight clothes do make me hurt, though. I use estrace before bedtime, a steroid topicallyin the morning and in the evening, and before I have sex, I rub lidicane 2% on the vaginalopening. I also use Astroglide during sex. Last week I had a really bad day, and Idiscovered that mens Hanes boxers, the cotton fitting ones feel really great!!!! They donot have a seam in the crotch and this does make the pain subside, because there isnothing irritating it. Also if there is anyone in the Savannah Ga area that knows of a doctor that is up onVVS please let me know. The doctor that diagnosed me has disappointed me and I am thinkingof changing doctors, but only if someone can recommend a dr that knows about this illness. Good luck to all and hold your head high. We will on day conquer this feat!!! Crystal
Commentanyone have any luck using clobetesol .05% (steroid creme)? I am currently using it andhave already noticed a difference.I will only be using it for 6 weeks. I was usingpremarin(estrogen creme) but it seemed to stop being effective.
CommentI disagree with the women who objected to Ms Moon's offer to supply herbal salve. Ibelieve her intent was a caring and intelligent offer. You folks who object to that, well,don't order any from her. Some of you sound a bit immature. I am interested in any help Ican get and if Ms. Moon product can help me and others well then it is a good thing. Byefor now.
CommentJust read the article in July Prevention. I was diagnosed August '97 with vaginalexzema. My gyn biopsied the area. I was in disbelief. Never had a problem with yeastinfections or this awful itching & burning. He said he was sorry and that he, too,suffered with exzema. I bet it wasn't genital, though! He said there was no cure and itcould go away or last forever. He prescribed a lotion and told me use it sparingly and nolonger than 2 weeks. In between, I was to use Aquafor Original Ointment, no underwear ifpossible, watch the detergents, fabric softeners, blah , blah, blah. Forget intercourse!What was all this about???? After trying every thing except the surgical stuff....alchoholinjections were recommended, but geez.....couldn't bear the thought......I came across theonly thing that gives relief and I'm almost back to normal. I want to share this in caseit can help someone else. It is a cellular detox bath...ABRA Theraputic Baths. Made byABRACADABRA, INC. Guernville. CA. After reading some of the info on taking baths I washesitant to share this, but it has helped me so much. This is not an advertisement either.I no longer use the prescribed lotion. Just the ABRA and the Aquafor Ointment. Stress doesseem to cause flare ups. I moved in April and that was my last flare up. A really bad one.Has anyone heard of vaginal exzema?? After reading all the entries it seems likevulvodynia to me. I have an yearly gyn appt due now and I will take the article andwebsite info with me. Thanks to everyone who has shared.
CommentMelanie, where did you get the bath stuff? I couldn't find it via internet. Do yo needa prescription? Is there anybody out there who lives in Germany or at least in Europe?German doctors have know idea what the term 'vulvodynia' means and I seem to be the onlyperson in Germany who has got this terrible disease.
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CommentI've been suffering with vulvodynia for about 9 yrs. andsometimes feel like I want tojust die. The pain can get so bad. I read about Dr. Howard Glazers procedure and wonderedif any of your had heard of it. I've even made an appt. to see him in New York and I livein Colo. Any one actaully gone to his clinic? Please e-mail me---I'm ready to freak!
CommentHi This is the first time I've looked at this site for a few months now. The last timeI read the guestbook, I was very down and in a lot of pain, the messages left at leastgave me hope that I wasn't going completely mad, as vulvodynia is not something you caneasily share with others. My main reason for writing is to offer some hope and advice for those of you who may besuffering symptoms because of something called pudendal neuralgia. It transpired that Ihad this, probably induced by a fall onto my coccyx, many years ago. This was diagnosed bya Genito-urinary clinic (in the UK), having got over the stigma of visiting such a place(!) i was amazed by their kindness and insight into this condition. I was referred to aMcTimoney Chiropractor (I think this school of Chiropractic is only in the UK currently,but may have expanded) who was fantastic. She puts my pain down to a traumatic injury tomy coccyx, which is putting pressure on the nerve. The treatment has been a littleuncomfortable, but the benefits are immense - I would recommend an assessment to anyonewho may have this type of problem. To not be in pain, or in fear of the return of the painis truly wonderful. To those of you are still suffering, my thoughts are with you, Godbless.
CommentTo Melissa on 6/27; I have tried the clobetesol .05% cream. My doctor told me to try itfor 2 weeks every other night. Yes it helped for those two weeks. But when he prescribedit, he said not to use it very often after that because it was so strong and if it getsinto your blood stream it can cause bigger problems. So I use it occasionally when I'mhaving really bad days. It helps for a couple of days at a time, but then the itchingalways comes back. I would use it more often, but my doctor kind of scared me when he toldme the possible bigger problems I could have! Teri
CommentHi everyone. I haven't posted or really read any postings since the end of March...I decided it wastime to 'come back' for a visit. I have suffered from vulvodynia for over 6 years now - mystory is posted somewhere in March. Anyways, I don't know about you guys, but this thingcan really play with my mind as far as when I can and can't talk about it...When I'm goingthrough a period of mild to no pain, the LAST thing I want to do is talk aboutit...because I am sooo afraid it's going to instantly 'come back'. Then when I'm feelingpretty 'good', if I get the slightest bit of a 'twinge' I can become overwhelmed with fearthat, again, it's instantly going to come back in full force! I believe that even if I am'cured' some day that I will have this 'fear' for the rest of my life! Anyways, I am here for a reason...other than just to 'ramble'. There was a posting wayback when by Mary (somewhere near my original one) regarding her experience with ART-Active Release Technique...which is practiced by licensed chiropractors. Since my vulvarburning supposedly stems from a hip and lower back injury, I decided to look for achiropractor who might be able to help me, like one did for Mary. After the chiropractor I am now regularly seeing did thorough analysis/exam of myhistory, he concluded that I have severe scar tissue in my entire left hip flexor arearunning down into my lower abdomen as well. This scarring, he believes, has been directlyaffecting a nerve called the genefemoral (sp?) nerve which comes out of your hip flexormuscle and runs directly into your vulvar area...His goal is to get rid of the scarring(by doing ART). He believes that once the scar tissue is gone, my pain will be gone aswell. HMMM....I of course, have been skeptical, only because of how long I've sufferedfrom this and how many supposed 'cures' have been thrown my way...but Mary was cured and Iguess 2 other women were as well by ART. There is a sight on ART you can log onto...Ican't remember it right now. Mary typed it on her posting. As far as whether this is 'working' for me or not...it is so hard to tell because for 6years I have had good periods of tiem and unbearable periods of time, being on and offdrugs- topical, oral, biofeedback, you name it, I've done it...so there has been really noway of telling what has helped or not helped for ME. I am happy to say though, that I amoff the Elavil and have put my trust in my chiropractor alone. I still see my physicaltherapist who will continue to help me as well... Anyways, Mary asked me to post my 'update' and I didn't think I was quite ready...Iwanted to wait until I'm pain free. It would be nice if I REALLY believed that that couldhappen to me. So, instead of sulking while waiting I did decide to 'come back'... I'm sorry for rambling and thank you for listening...I know I have said this before,but please, if any of you haven't been to a physical therapist and/or chiropractor to getyour body structure checked out...please do. It is worth a shot. Believe me...If I hadbeen advised to do this 6 years ago I might notbe here right now. Just a quick note regarding itching and redness 'down there'...I have it all off and on- plus the burning. The three of these symptoms are the result of my nerve being affectedby all that scarring in my hip and abdomen area. I had to literally erase the idea ofBACTERIA - as hard as it is to not believe that's what this really is - out of my mind.So, yes, redness and itching can come as a result of nerve damage as well. Thank you everyone for listening...feel free to e-mail me any time. Tammy
CommentHi again...Mary's posting on ART information is on 4/1/00. There is a number you cancall to find a licensed chiro. who practices ART in your area...719-473-7000. The websiteto get more info. on ART is www.chiropractic-sports.com/referemce/ART.HTML Good Luck. -Tammy
CommentHas anyone seen O Magazine (the latest from our favorite fabricated talk showpersonality)? Anyway, if anyone still cares at this point, she ran an article about whywomen don't want sex and went out of her way NOT to mention vv/vulvodynia. They listedvaginal dryness, hormonal problems, stress, fatigue, and loads of other factors in yourhead. At this point I don't know if it would do any good to write to the magazine, but ifanyone wants to try you can email her and her problem-free vagina atYourOpinions@hearst.com.
CommentTo DK: I laughed when I just read your post about Oprah. Too bad she doesn't give adamn about our pain and neither does Barbara Walters or anyone else that has beencontacted!!!
Commenthi, i have put several entires in the guestbooks in the last year. i have been almostcompletely cured, but get flare ups of the burning now and then. i was wondering if anyonecould help answer a question? Has anyone taking antibiotics (in particular stronger ones)have increased pain/burning or brought on a flare up of vulvar pain? I am taking one foran ear infetion and suddenly my symptoms came back, i have not had a flare up in twomonths, and before that 6 months. if anyone has any answers, please help! also, i have along distance relationship. when we are not together, obviously there is no sexualcontact. once we finally see each other, it is a lot at once, and i end up feeling soreand sometimes get a yeast infection from it. has anyone else experienced this? my vulvarpain consists of intermittent burning and soreness. it lasted for 4 months last summer andsuddenly went away ( thank God!!). i was misdiagnosed and treated several times for yeastinfections, and ended up severely burning my skin. as a result, i get easily sore andchafed after frequent intercourse. and i have been tested for everything under the sun,and had nothing. we use an all natural lubricant from a health food store which isexcellent, but i feel like i need something that can soothe it afterwards, almost amoisturizer of some sort. if anyone has any advice on any of my questions, i would love tohear from you! Thank you, LIZ
CommentJust wondering if any of you thought about or where even tested for the following:Blood flow problems. I may not be articulating this properly so I will try to elaborate.You know how they told me that impotence was in their heads?? Just like they try to tellus this too! Now they have Viagra. Which I believe helps the blood flow properly to thearea therefore enabling an erection. What if Vulvodynia is a blood disorder, which is theexact opposite of impotence. The blood is flowing to freely to the area, thereforecreating swelling, such as in myself, and other sensatations that I am sure we allexperience. Do this make sense to anyone? Has anyone questioned their doctors on this? Ifso what did they say? Is there a test to determine something like this? Is there a drugthat can do the opposite of Viagra. I am interested in any and all thoughts, whether youagree with what I am writing in this post or not, and any details of conversations youhave has with doctors on this. You can write to the email address above or post on thissite if you are more comfortable. Lauren
CommentOK one more post for the day! Anyone who lives in NYC who is not embarrassed about thename of the condition and who is tired of being ignored, tired of doctors who brush us offand tell us it is all in our heads, tired of hearing there is nothing wrong with us andwants to do something bold-please contact me. I am seriously thinking about getting upearly in the morning... Going to the today show with a huge poster, doing my damndest toget a camera shot, and having a poster that says something to the effect of" curevulvodynia" or "stop ignoring Vulvodynia" You get the point. I am justreally tired of not getting the correct help and tired of reading about all the rest ofyou who can't seem to get anyone to take your pain seriously enough and offer proper help.Sure there are a few practitioners that care, I have an acupuncturist that I feel cares. Igo every week and yes it helps somewhat. But I am still in pain, still swollen, stilluncomfortable, still getting pinching and pulling and itching sensations. I am tired offeeling like my clitoris is swollen all the time as if I am in a hightened state ofwell...(when I am not and don't want to be!) It is physically tiring to constantly feelthis way. Well anyway. If anyone lives in the NYC area wants to be bold with me, please contactme. I am so willing to do this. Not because I want to. Because I feel that somethingdifferent and bold has to be done. Because the media isn't paying attention to us. Becausewe have to give them a hook that makes them want to write about us. They are choosing todistance themselves from this subject because of the stigma attached now, which is that weas women make this up! That has to change and the only way to do that is with the media'shelp. And the only way to make them write a story or stories is to give them another hookon vulvodynia, like showing up at Rockefellar Center in the morning with a huge sign. Lauren
CommentI need help. This is the first time have written or talked about this with anyoneexcept my husband. I have sores. Right now there is a red sore right out outside my vaginaopening. And the left side of my vagina opening burns when I insert my finger. There useto be a sore on the left side of my cervix. I don't know if it's there anymore because Ihaven't tried penetration in a year. My OBY didn't believe me at first because she said itwas rare to have pain on your cervix, but when she touched it with a Qtip, it was sopainful she did believe me.For the past 6 years, I have had this problem. I"flare" up after trying to have sex. I get diagnosed for yeast infections. Butit's recurrent. I also "flare" up with my period. I seek doctors( too many tocount!) , but have not found a good one. So then I get depressed and play the denial gameuntil I can deal with it again. When I can't deal with it, I ignore it. It doesn't hurtall the time. Only when you touch the sores or try to penetrate. I never have sex. Myhusband and I tried only twice last year. This is a sad sexual history. But, I seeeveryone here suffers too, so I don't want to sound too sorry for myself. I have not beendiagnosed, but my last OBY gave me info on Vulvodynia and VV. She was nice but just didn'tknow what to do. Can anyone recommend a good OBY in Dallas, TX? I have yet to find adoctor that knows much about this and what to test for or what to do. PLEASE EMAIL ME.Thanks. Lucy
CommentTo Liz: I've had VV flare-ups everytime I've had to take antibiotics. I now only takethem if I absolutely have to. After sex, I take a hot bath & apply vitamin e oil to myvulva & this seems to help a lot. I continue with the baths until the pain, burning,urinary symptoms go away. Hope this helps you. Sue
CommentTo Crystal, I was reading through this guestbook and saw that you are having a surgerysoon. I just wanted to say to you (and everyone) thanks for sharing and I will say aprayer for your safe and successful surgery. Chin up, and hopes Very High!
CommentI have been visiting this site since I saw in 'Prevention' the article about thismaddening condition. I too have been to my Dr. who is very kind and caring but after everykind of test showing nothing wrong or abnormal, he prescribed vaginal creams that areuseless. When I read about all the women suffering on these 'Guestbooks' I felt better asI honestly thought I was the only one. This is not a casual topic of conversation! So Iguess as the phrase says,"Misery loves company", is right. Then I rememberedGreat Granny's book of remedies!, all hand written and not always decipherable but...'TOUCH WOOD' ... so far it IS working! Now please don't scoff at me, but it is good old apple cider vinegar, undisstilled,still has the 'mother' in it and is very cloudy. It must be in a dark container as lightmakes it lose it's potency. So I decided to research this fine old remedy and I foundbooks have been written on it for almost every kind of ailment, but of course because itis natural and pharmacy's cannot get patents on it then you never hear anything about it.Idecided to do so and I have come from being a case for the mental hospital to where I amnow just using it when I feel the slightest twinge of anything starting up again. At first I used it straight from the jug, as is, and I tell you I had to hold back thetears and try to get my breath because it stung but very soon it was better, I am alsotaking 2 tsp. in glass of water before every meal,I can't believe it. But it has somethingto do with your PH balance in your body and if it goes too far one way or the otherapparently we are in trouble, just like our gardens, if the soil is not the proper PHbalance you don't get results from all your work and planting.It makes sense becauseeveryone seems to have different symptons but the results seem to be similiar. Anyway itwon't hurt you to try it and who knows it may help you as it has me, I certainly hope soand to H--- with all those unsympathetic medicine men!
CommentI have been visiting this site since I saw in 'Prevention' the article about thismaddening condition. I too have been to my Dr. who is very kind and caring but after everykind of test showing nothing wrong or abnormal, he prescribed vaginal creams that areuseless. When I read about all the women suffering on these 'Guestbooks' I felt better asI honestly thought I was the only one. This is not a casual topic of conversation! So Iguess as the phrase says,"Misery loves company", is right. Then I rememberedGreat Granny's book of remedies!, all hand written and not always decipherable but...'TOUCH WOOD' ... so far it IS working! Now please don't scoff at me, but it is good old apple cider vinegar, undisstilled,still has the 'mother' in it and is very cloudy. It must be in a dark container as lightmakes it lose it's potency. So I decided to research this fine old remedy and I foundbooks have been written on it for almost every kind of ailment, but of course because itis natural and pharmacy's cannot get patents on it then you never hear anything about it.Idecided to do so and I have come from being a case for the mental hospital to where I amnow just using it when I feel the slightest twinge of anything starting up again. At first I used it straight from the jug, as is, and I tell you I had to hold back thetears and try to get my breath because it stung but very soon it was better, I am alsotaking 2 tsp. in glass of water before every meal,I can't believe it. But it has somethingto do with your PH balance in your body and if it goes too far one way or the otherapparently we are in trouble, just like our gardens, if the soil is not the proper PHbalance you don't get results from all your work and planting.It makes sense becauseeveryone seems to have different symptons but the results seem to be similiar. Anyway itwon't hurt you to try it and who knows it may help you as it has me, I certainly hope soand to H--- with all those unsympathetic medicine men!
CommentI have been visiting this site since I saw in 'Prevention' the article about thismaddening condition. I too have been to my Dr. who is very kind and caring but after everykind of test showing nothing wrong or abnormal, he prescribed vaginal creams that areuseless. When I read about all the women suffering on these 'Guestbooks' I felt better asI honestly thought I was the only one. This is not a casual topic of conversation! So Iguess as the phrase says,"Misery loves company", is right. Then I rememberedGreat Granny's book of remedies!, all hand written and not always decipherable but...'TOUCH WOOD' ... so far it IS working! Now please don't scoff at me, but it is good old apple cider vinegar, undisstilled,still has the 'mother' in it and is very cloudy. It must be in a dark container as lightmakes it lose it's potency. So I decided to research this fine old remedy and I foundbooks have been written on it for almost every kind of ailment, but of course because itis natural and pharmacy's cannot get patents on it then you never hear anything about it.Idecided to do so and I have come from being a case for the mental hospital to where I amnow just using it when I feel the slightest twinge of anything starting up again. At first I used it straight from the jug, as is, and I tell you I had to hold back thetears and try to get my breath because it stung but very soon it was better, I am alsotaking 2 tsp. in glass of water before every meal,I can't believe it. But it has somethingto do with your PH balance in your body and if it goes too far one way or the otherapparently we are in trouble, just like our gardens, if the soil is not the proper PHbalance you don't get results from all your work and planting.It makes sense becauseeveryone seems to have different symptons but the results seem to be similiar. Anyway itwon't hurt you to try it and who knows it may help you as it has me, I certainly hope soand to H--- with all those unsympathetic medicine men!
CommentSorry, sorry, it is the first time I have sent anything here and kit looks as if I sentit three or four times, is there any way the powers that be there can erase some of them?
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CommentI only wish I found this site sooner. I've been suffering for the past 3 years goingfrom doctor to doctor. Luckily, where I live there is a doctor who specializes inVulvodynia and is one of the top 3 doctors in the U.S. I just had surgery last month...avestioplasty. My doctor has a 95% success rate and I hope I'm one of them. It is nice toknow that I'm not alone...altough I wouldn't wish this on anyone. If anyone wants any infoon the doctor or the surgery....please let me know.
CommentI only wish I found this site sooner. I've been suffering for the past 3 years goingfrom doctor to doctor. Luckily, where I live there is a doctor who specializes inVulvodynia and is one of the top 3 doctors in the U.S. I just had surgery last month...avestioplasty. My doctor has a 95% success rate and I hope I'm one of them. It is nice toknow that I'm not alone...altough I wouldn't wish this on anyone. If anyone wants any infoon the doctor or the surgery....please let me know.
CommentInteresting site! Don't know if this is the right name for what I have, butsporatically get shooting pains. Could this be the pantyliners although they are notscented?
CommentThis is in reference to the Operah comment. What does that b---- know anyway? I thinkthat she keeps gaining weight so that she can be idled when she loose it! And she knowsthat her and her self that is woth billions of dollars would just "buy" a cureif she got vulvodynia. And to say that this is stemming from being tired, beingoverworked, etc etc etc, WHO DOES SHE THINK THAT SHE IS??????? That woman wouldn't knowreality if it slapped her in the face. Oh well you get the point and I fell better nowthat I got that out!! Have a painfree day ladies.
CommentI am not sure this is for everyone, but I have horrible pain on contact in the 3-9o'clock region and I have found that drinking or doing light drugs before sex actuallyhelps. Obviously for some people this would cause more problems but one glass of scotch orhit from a joint won't kill you and it seems to dull the pain (although alcohol dullssexual response as well). Is it pathetic that we have to do this? Yes, probably, but noweirder than cutting out a part of your body because no one cares enough to listen, andit's certainly less painful and more fun. May I reiterate, one more time, that this IS NOTFOR EVERYONE, but if you are young and don't have any funky addiction history, it might beworth a try. And for those of you who think selling on this site is admirable, what wouldyou say now if I decided to sell some wacky tabacky? Totally inappropriate, don't youthink?
CommentLadies: Now remember, Oprah is not personally reading and rejecting your emails andletters. She has a large staff to do that.
CommentI have reading the guestbook entries for almost 6 months now and I finally decided tosubmit my entry. I have had recurrent yeast infections for approximately 7 years now. I am25 years old and started taking birth control pills at the age of 17 1/2 due to irregularperiods and took them for 8 years. Even though I stopped the bc pills in November 1999 Iam still getting yeast infections monthly and they have seemed more resistant tomedication. In the past I have always been able to use Terazol 7 and the yeast has goneaway. Within the past year along with the yeast infections I have constant vulvar pain,redness, and discomfort. I am unable to wear jeans and sit for long periods of time. Mycurrent gynecologist has me on Ketaconazole 400mg a day and it seems to be helping theyeast infection, but the vulvar redness is still the same. I am really getting irritatedby feeling like this all of the time. If anyone has any suggestions, please feel free toe-mail me..
CommentMy 76 year old mother is suffering horrible since 3 years from Vulvodynia. after seeingall kinds of specialist and not finding any help at all, she was put on morphium, whichknow also is working less and less. please, is anybody out there able to give me someadresses of other women suffering from this illness in Germany, so my mother could contactthem . She has no computer , and speaks no english. I"am despreate to find any help Ican give her. Thank you, Dorothee .
CommentThis is the first time I've visited this site, I hope I do it right :) I diagnosedmyself with VV after discovering my symptoms were experienced by other women on thevulvodynia Yahoo! club. Has anyone else here has pain since childhood? I'm so glad placeslike these exist!
CommentDoes anybody know of good, knowledgeable doctors in the St. Louis or Chicago area?Please email me if you do.
CommentIt has been awhile since I have posted here but I just wanted to let everyone know thatI finally found some relief. I am seeing Dr. Sobel in Detroit Michigan and he has metaking 50mg of Elavil and Diflucan once a week. After suffering in pain every day nonstop, I am finally having pain free days. There will be a day here and there that the painwill surge up again but it usually is only for a little while. I have been able to playsoftball and have started going back to the gym. The one downfall to this medication isthat I believe the Elavil has made me put on about 30 pounds. I'm sure it is also combinedwith the fact that I couldn't excercise or be active in the past year due to pain. Anyway,I go back to see Dr. Sobel next week and we may start using Cortisone injections at thattime. It depends on how I am feeling. I will keep all of you updated if I find anythingelse that helps. Hang in there ladies and make sure to get some kind of support. We can'tdo this alone! I'm feeling good now, but who knows how I will feel tomorrow. Hopefullythis will last. I am praying for all of you.
CommentHello! Does anyone know of a good doctor in the Elizabeth, NJ area? I was seeing Dr.Benson Horowitz in CT and have just moved to NJ. Thanks!
CommentDoes anyone have the name of a dermatologist in Nj who treats vv? I have been diagnosedwith contact dermatitis and psoriasis of the vulvar by my Gyn She reached diagnosis aftershe took a biopsy. She prescribed Diprolene creme 2x per day but it causes even moreburning than before. i need to see a doctor who has treated this successfully. Can anyonehelp?
CommentHi. I've been reading this site for quite a few months now, and I've found the entriesboth interesting and insightful - it helps to know that others are trying to make sense ofthis confusing condition. The reason I'm posting this note, is in response to a couple ofentries I've read - regarding antibiotic use in relation to yeast (candida) infections andthe posting from Lauren further up the page, regarding "blood flow" to"the" area. Partly because these are areas I keep coming back to myself, but Ijust thought I'd let you know about an interesting site about candida (which has some goodlinks) and its effects on our health - "Karen Tripps Candida Recovery". Just tolet you know - this site does mention some homeopathic names,etc but her story andexperiences are interesting - I have to take antibiotics fairly regularly, but it doesmake you wonder what all this medication ends up doing to your body? The other point aboutthe "blood flow" - my mum sent me an article from England called 'living withpelvic pain'. The article (featured in a magazine in England) - was about a 30yr old whohad had pelvic pain for short periods of time in her life - when for no reason it"flared" up chronically. She saw a Professor Richard Beard (inMiddlesex,England) and after a variety of examinations he found that she had severe pelviccongestion - linked to a malfunction of her ovaries/hormone imbalance. The treatment shehad temporarorly "shut-down" her ovaries for 9 months, which was combined withcounselling - she realised she "internalized" her problems which exacerbated hersymptoms. Anyway, I guess this probabably an over simplification of her treatment, andthis may not be of much use to others but I thought it was a point of interest - I guess Ijust understood what she meant when she said that it was a relief to find out what waswrong with her after years of being fobbed off with by Dr's and given painkillers andtranquillisers. Anyway, I hope this may be food for thought for some of us, as I knowsigns and symptoms vary drastically for all of us. Thanks.
CommentIn regards to Liz 6/28, Liz, you say you are pretty much cured now, but you didn't sayhow (or what you think is responsible for your recovery). Would you let us know? That'sreally great to hear! Thanks.
CommentYesterday I saw a specialist at Temple University Hospital in Philadelphia. He said Ihad a chronic allergic reaction (contact dermititis). He seems to think it is from my cat.Does anyone else have a cat? I have been tested for allergies and I am highly allergic tocats. He said the swelling and burning could be from this. He prescribed a steriod cream(triamcinalone?) He also suggested giving the cat up. For now I am going to try to keepher out of our bedroom. I am also going to call the vet to see what else I could do, suchas giving her baths, etc. I also had an allergist tell me the same thing 6 months ago. Whoknows.
CommentI was recently diagnosed with vulvar vestibulitis 18 days ago -- en route on myhoneymoon. So far, this disease has made my new marriage incredibly difficult. My husbandand I are committed Christians, and with difficulty, we waited until marriage to have sex.Unfortunately, we're still waiting. The wedding night was a disaster. The pain was so badthat I made an appointment with a gynecologist before we left for our honeymoon. Thedoctor diagnosed me with vulvar vestibulitis, and he gave me some Betamethasone steroidcreme and some lidocaine jelly. But the pain is still bad, and we haven't even attemptedsex in over a week and a half. Pretty awful for newlyweds. How long does this last? I am already getting very depressed. My mother has beenstruggling with clinical depression for the past three years, so I know the signs ofdepression. Already I don't feel like the same girl my husband married. I'm 23, a newlywedvirgin, and I have no idea how soon I'm going to be able to lose my virginity and enjoyit!!! The worst is that I don't even want to try to have sex anymore. I'm so afraid of thesevere pain, that my sex drive is practically non-existent. My husband doesn't know whatto do, I don't know what to do. I'm considering stopping my birth control pills, because Isure don't need them now, plus my system is pretty sensitive to drugs in general. Any hope or consolation someone can offer me would be greatly appreciated. I'm a wreck.Feel free to email me.
CommentThis is in response to Susan who saw a Dr at Temple University in Philly. Do you havehis name and phone number.? Is there a clinic there that specializes in vv?
CommentCan anyone recommend a gentle, non-irritating lubricant?
CommentYes I use a non-irritating lubricant called Slippery Stuff. Found it in Washington DCand New York. At least it was not irritating too me. My friends who do not have thisillness use it and love it too!
CommentAstroglide is another lubricant which seems to work well.
CommentHi ladies, I've just finished reading the recent entries and sit here with very mixed emotions.Part of me feels very depressed that what I have does not seem like it is curable and thatI am going to have to suffer for the rest of my life. The other part of me is very happyto know that there are other women out there with the same problems and may have some helpto offer. I have been married for less than a year now, and needless to say this problemis putting some strain on our marriage. My husband is very supportive and feels terriblethat I am in so much pain. Both of us are just so frustrated. I have suffered minorvaginal irritation for 5 years or so, but it has recently gotten a lot worse. Last summerI got really sick and was diagnosed with Irritable Bowel Syndrome. Since then the painseems to have gotten worse. I was recommended to this site by a lady who also suffers fromIBS and thinks that the two problems may be related. After reading these entries I wasoverwhelmed at all the different treatments and drugs that women have tried. Do I have tojust keeping trying them to find what works? Are there some treatments that work betterthan others? I have a soctors appointment in a couple days, but I'm not sure if he'll beable to help me out. The doctors I've seen before have been useless when it comes to thisproblem. Thanks for listening. I hope somebody can help me.
CommentTo Ruth, A good vulval/vaginal moisturiser is a little olive oil.
CommentTo Ruth. Re moisturisers Have you tried using a small amount of olive oil ?
CommentI ran across this website last weekend when surfing the web for vestibulitis and immunedefincincy disorders. I have had problems with recurrent yeast infections, burning,itching, various discharges, oders, and pain and swelling of the vulva for over 20 yrs. Ihad my 1st yeast infection when I was 14. And a ocasional one in high school and college.When I met my 1st husband he gave me genital warts. That's when everything went downhill.It took 2 yrs to get rid of the warts. After that my ordeal got worse, the pain andconstant burning never went away. I went to many drs for this some told me it was yeast,some said allergies and some said it was in my head. It wasn't until I was remarried andabout 7 yrs ago my GYN happened to be at a conference about vestibulitis that I wasdiagnosed. Her treatment was laser surgery. Didn't work Then the dr referred me to aspecialist in IA City, Ia. I got some relief from his suggestions. Use All Free Clearlaundry detergent, no fabric softeners not even fabric sheets in dryer. I wasn't usingfabric sheets on my clothes but was using them on my husbands. They left a residue in thedryer which got on my clothes and caused me to break out in hives on buttacks and vaginalarea. Now we don't use anything. Can't use Always pads has something in it that causesirritation. Have to use Dove sensitive free soap. No pantyhose and only all cottonunderware and should be changed if moisture present can be irritating. Zinc oxide orA&D ointment can be used for painand burnig. Also prescribed an ointment with nystatinin it. Soaking in baking soda can help irriation. Some things I have found on my own issoaking in apple cider vinegar can help. So can soaking in cornstarch. My dr connectedthat I had an immune defincincy disorder and has found that some women with this diseasealso have vulva diseases and that they are connected. Also he has made a connection withthe HPV virus which he found in my vulva March '99. Some of you might what to be testedfor this. Mine was found by a biopsy. From what I have read about HPV most everyone has itbut aren't aware of it unless having symptoms. My pain and burnig got worse and that iswhen he found it. Now I am at risk for cancer of the vulva and the cervix due to thewarts. I have ordered the noni juice to see if that will help. It just came and have juststarted taking it. Hope I have helped some of you with whast I have learned over the yrs.Hopefully some cure or at least a sure treatment for this can be found. Women shouldn'thave to suffer this way. Chris
CommentI am curious to know how many of us take medication for high blood pressue and if therecould be some link between them and vv. I think some of my problems started when my GPprescribed Diovan for high blood pressure.
CommentSomething I forget to mention in my 1st writing. The lubricant thta my GYN has meusing...now don't laugh...is crisco oil. It is natural and non irritating and does workwell. Also in response to the woman who's GYN told her, her vestibulitis is from anallergy from her cat. Well I too have a cat and I'm extremly allergic to cats, but havenever been told that my cat had caused this condition. Thank God my allergist didn'tunderstand this condition or he might have used it as another reason to get rid of my cat.I have had a cat since I was 4 yrs old and am now 41 don't plan on ever being without one.Will give up some things, but not that. I did go 2 yrs without a cat, the apt I lived indidn't allow them. It never made a difference. Just thought I'd let you know my thoughtson this. Chris
CommentI just wanted to say my doctor told me to use crisco every other day and premarin creamon the days I don't use the crisco. I thought he was crazy, but I will try anything. Funnything, I have been feeling alot better since trying the crisco. Just thought I'd let youall know it seems to be working for me, I've only been using it for about 2 weeks now.I'll post again in about a month and let you all know if it is still working. One thingabout this illness, every time you think you have it licked, it flares up again. Good luckeveryone. God Bless you all.....
CommentI am 46 years old and in 1997 I was diagnosed with systemic, end stage InterstitialCystitis. I also have vulvodynia and vulvovestibulitis syndrome which includes chronicpelvic pain and pudendal neuralgia. I also have Sjogren's Disease (SD). As of 11/98 I amnow completely disabled, 70% homebound, 20% bedridden and a 10% window of"energy" where I cram in all the necessities of life. My treatment options areso limited due to my numerous drug allergies and lack of competent physicians in my areaand a lousy insurance plan provided by my former employer. I am a new subscriber to theNVA newsletter and a long time subscriber to the ICA newsletter. I am single and any typeof sexual activity is absolutely excruciating for me so I haven't dated since 1995. Theloneliness and lack of emotional intimacy with the opposite sex is unbearable. As a nurseI am shocked and appalled at the stupidity of the medical establishment, in my city atleast, regarding IC, VVS and Vd. I get so tired of explaining myself and trying to provethese diseases exist and are real everytime I go the ER for intractable pain management. Iam on a hospice type regimen with opiate narcotics as that is all my ins. co. will payfor. Anyway, I am glad I get to vent. I need all the support I can get living with thisnightmare. I will accept e-mail and I have signed up with this web site for future access.
CommentAddendum to the message I just posted. I have "devoured" any and all info re:IC, VVS, Vd, Pudendal Neuralgia, Chronic Pelvic Pain and pain management strategies. TheInterstitial Cystitis Association and the Interstital Cystitis Network have excellentresources for both the physical and psychological pain we all suffer. I am a new internetuser and I am astounded at how many sites there are for the above diseases (so how comethe idiot doctors don't know as much as the www?) IC, VVS, and Vd all feed off of eachother. If you have one it's almost a sure thing you've got the other 2. These threehideous diseases seem to come as a set. I was reading one entry from someone and I doagree that it's time we as women begin to revolt against the testosterone heavy AMA andget the RESPECT, research dollars and treatment we deserve! We need to go before Congressto get the funding through the NIH, which is always backed by a greedy drug company. Ifonly we had a "famous" person who suffered from one or all 3 of these diseasesmaybe then we would get recognition. My only suggestion is to talk, talk, and talk somemore. Tell everyone you come in contact with about these diseases and how it destroys thequality of life. Silence is deadly. We need to shout about this from the rooftops and thenmaybe things will start happening. Am open to feedback from any of you and am also a goodlistener and will answer questions. If I don't have the answer, I'll research it to thebest of my ability for you. Let's stick together. There is power in numbers!!!
CommentI recently started using Stevia which is an alternative sweetner to sugar. It isactually made from Chicory root. It seems it could be irritating my vulvodynia, but I amnot certain. Does anyone know of a sugar substitute that is not irritating to vulvodyniasufferers? I am trying to cut sugar out of my diet to see if my problem could be a yeastissue. I know we are not supposed to use chemical sweetners such as equal and sweet n lo.Also, other that any soy products, is there a non-dairy and sugar free product that can beused for certain cereals and mainly for the creamer in my Kava(coffee substitute)? Pleaseemail me direct also. I am willing to communicate with anyone regarding these womenissues. Thank you for listening. Also, I read in my nutritional healing book and it listsso many vitamins and supplements to take. Could someone tell me what is the absolute bestvitamins, supplements and nutritional things to take. I think I have to many things totake and it too difficult. I feel like a supplement freak! If there is someone who isknowledgeable in this part, please email me. Thank You.
CommentDoes anyone know where to get Burow's Solution (suppose to help with burning associatedwith urine touching vulvar tissue). I would like to try this . I use water now to rinse,but need something better.
CommentThis is to thank Laura Hubbard for giving me the courage to go public with this on avery popular news show in our area. I e'mailed the anchorwoman who does a segment onhealth issues. She wrote me back right away asking if I would be willing to be on air. Iam VERY shy and told her I would think about it. I am going to e'mail her back and tellher that I will do it, if her producers agree to run a segment on vulvodynia. I'll keepyou all updated. If this is a go I'm going to need encouragement and prayers.. How aboutwe all e'mail or contact our local news programs, especially those who run health segmentsregularly. It will be easier to get the word out this way than to try to get nationalattention I believe. Best wishes to us all and I'm praying for all of you. Rebekah
CommentHurray, Rebekah!! Thanks for deciding to do it, and good luck...definitely keep usposted. It's a good idea to write to our local news stations. I am going to do the same.nicki
CommentWay to go Rebekah! Keep us updated. Where do you live? I tried contacting my local TVstation with no success but think I will give it another try.
CommentI live in southwest michigan. I'll let you know the station, time and date if and whenthe producers decide to go ahead with it. It's a station out of Grand Rapids that has ahuge audience. I know that there are women who would see it and say, "Oh my word,that's what I've been trying to convince my doctors of." The anchorwoman Icorresponded with who does the health segment seemed encouraging about doing a story onit, I hope her producers give her the okay. If anyone is in this area, e'mail me personally. It would be fun to chat and if youwould be on the show with me, I wouldn't be so scared. Hope you all have a wonderful Summer! Rebekah
CommentOne more thing I have been getting myself into "scratch and itch cycles". Once they start,they are so hard to end, does anyone have any advice? It's not scratching while I'msleeping that gets me into this trouble, it itches so bad when I'm awake that I find itvery difficult to keep from running to the bathroom to cry and scratch.
CommentTo Anna Johnson- I think you are wondering about domeboro's solution. It is an over thecounter powder that when mixed with water forms an astringent. It is somewhat soothing toburning of the skin- especially if you refrigerate it.
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CommentI am 30 years old, married, with no kids yet, but hopefully, I will be able to getpregnant soon. It will be two years this fall since I started having problems which havesince been diagnosed as vulvodynia. I hope not only for a cure, but for vulvodynia to be adisease that is widely recognized. I believe that mine could have been avoided, buthindsight is 20/20 of course. I had chronic yeast infections since I was 19 years old. Iused prescription and over-the-counter antifungal creams. A few times I was givenantifungal pills. I tried low-yeast diets and acidophilus pills. The infections alwayscame back. When I was 26 years old, I started putting a capsule filled with boric acidpowder in my vagina before I went to bed every other night. I was told this was a goodstrategy for chronic yeast by two nurse practicioners. If I stopped doing this, I felt aninfection coming on, so I kept doing it. I figured I was at least avoiding infections,doctors, the expense of creams, etc.; albeit, not the most pleasant existance. In Octoberof 1998, I started having the sensation that I had to urinate all the time, even after Ijust urinated, similar to having a bladder infection; which is what I assumed I had. WhenI went to the doctor, no infection was found. Then I started the going from doctor todoctor routine - ob/gyn, urologist, etc. I was told what ever I had was not caused byyeast infections or boric acid capsules. The doctors could not find anything wrong. I wasfrightened I had interstitial cystitus, but the urologist said I did not. I was miserable.Then after four months of this, the pain started. First in the groin area - both sides,then the bladder area, and finally in the vagina, where it has remained. I have had mostof the usual treatments. I have finally been cured of my yeast infections; unfortunately,too late. What has kept me infection free is a probiotic acidophilus called "PB8" (eight different bacteria). The urinary urgency/frequency symptoms have somewhatimproved in recent months. Right now, I'm trying to get a home EMG unit. I was prescribeda home unit by my urologist several months ago, but felt worse after using it. It does thestimulation only. I realized after checking out this website, that I need a unit whichwill read my resting levels. Every one has a similar, but different, story. I hope minehas helped someone. I know yours help me. Thanks.
CommentA special hello to Rebekah, Rebecc, & Vdpain AOL (I'm not sure if you want me topost your name). I will e mail each of you individually, but I just wanted to acknowledgeyour kind comments asap. We must stick together to get the recognition and medicalattention we DESERVE. Vulvodynia is not RARE- I believe the latest statistic is 2 to 4million sufferers. Contrast that to the 1 million who have Parkinson's or the 700,000 whohave IC like me. (Due to the male medical establishments attitude towards women manydoctors don't even believe IC exists and according to both the ICA and the ICN thisdisease is severely underdiagnosed). I'm finding the Internet to be a great help forsupport for vulvodynia and IC. Funding for diseases unfortunately starts with Congress(ugh) and recognition by them and the National Institute for Health and the Pharmaceutical(drug) Companies as sponsors (the people with the money). If only we had a celebrity tofront our cause...Anyway, good thoughts to you all and again, thank you for your kind andencouraging words and also to Dr. Glazer and this awesome website.
CommentA special hello to Rebekah, Rebecca, & Vdpain AOL (I'm not sure if you want me topost your name. I will e mail each of you individually, but I just wanted to acknowledgeyour kind comments asap. I am rewriting this as it didn't "take" the first timearound (new computer user) We must stick together to get the recognition and medicalattention we DESERVE. vulvodynia is not that rare. According to the latest statistics Ithink we are at 2 to 4 million women. Contrast that to the 1 million who suffer fromParkinson's. Only 700,000 are known to suffer from IC (I also have IC). In the malemedical establishment most don't even believe in IC so according to the ICA and the ICNthe number of people who suffer from IC is grossly undercounted. There is strength innumbers but the only way to get funding for research is through Congress (ugh) and thenthrough the National Institute for Health (NIH) and the Pharmaceutical (drug) Companies(the people who have all the money). If only we had a celebrity who could front ourcause...Anyway, I send you all good thoughts and appreciate your kind and encouragingwords. I especially am grateful for Dr. Glazer's awesome website. Believe me, as a newinternet user the www is almost overloaded with info re IC and vulvodynia, pain, etc.Happy hunting!
CommentI've been using clobetsol steriod for my vestibulitis and it is WONDERFUL! I don't havethe ripping and rawness after intercourse. I will only be on this for a few more weeks.What happens then?? Anyone with some experience?
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CommentDear Melissa, I have tried Lidex to the entire external area with some minimal help. Ihave never heard of clobetasol proprionate,so I looked it up in my nurse's drug handbook.It recommends use of this steroid for only 2 weeks. I couldn't tell you if this medicationwill keep the VVS "quiet" after discontinuing or not. I am SO HAPPY that thisworks for you! Please keep us all posted after you finish the drug. If your symptoms recurI would ask the doctor to renew the presecription. Good luck!
CommentI stumbled upon your website, Dr. Glazer, several weeks ago when I couldn't take thefrustrating burning, stinging, itching and other qualities of this disorder anymore. I'vebeen experiencing these symptoms for a little over a year now, beginning with greatdiscomfort during relations with my husband. I'd never had any problems before, and sincethat night, I've experienced a progressive downward spiral into an almost daily pain. Likethe others posted here, I experience severe anal pain as well as burning and itchingaround the outside of the vaginal opening, and sometimes deep within--this is more rare.Additionally, I experience the left (then the right) side pain of the pubic bone, as wellas the burning/itching of the pubic hair. These symptoms appear to be consistent with theweek prior to my period, mostly, but I tend to have the burning daily (usually saved forthe middle to last part of my day). I complained to my gynecologist in January about theirritation--saying that I felt like I was on fire--she said that I looked completelyhealthy, that there was no yeast, or anything that would lead her to believe there wasinfection. I've since gone to another Dr., with the incident I mentioned in the first partof my email...When I asked him about vulodynia, he cut me off quickly by saying,"It's very rare, and it's an actual skin disorder. I think you just use the wrongsoap." Well, I'm not so convinced. I've used the soap he suggested, I've used thebaking soda soaks, and I see no results. He's recently called in a steroid cream for me touse, but after reading some of the horror stories in past postings, I really don't need toitch and burn anymore than I already do. I have questions, though--I also experience atingling of sorts in the clitoral region--almost what I would consider to be a neuralgia(feels like a "stirring"). Does anyone else experience this? I've also notedthat many of you have had injuries to the lower back and tailbone areas. I was aballerina, and my body is "mechanically advanced" as my physical therapist putit, and I have always had lower back pain, but more recently, pain in my legs into mycalves. I've consulted a chiropractor and I seem to respond well to treatment (thenumbness in the back of my legs is gone). I find that what bothers me the most, though, isthe stabbing pain I get in and around my pubic bone--as well as the bruised feeling I getthere. Sometimes left, sometimes right, and sometimes the whole pubic area. I can dealwith almost everything else, even sex. I don't really have problems until after theinitial entry--then I'm good to go, but I will admit to hypersensitivity and burning painafterwards. Also, more often than not, I burn when I urinate. Hard to want to go to thepotty, ya know? Well, I think I've covered all of this stuff--I guess I just wanted tocontribute because now I don't feel so out of control. I know that I just need to consultthe right physician and find the right combination of things that work for me. Good luckto all of you--I do know your frustration and your pain. God bless.
CommentThis is to the Melissa who is using Clobetasol steroid cream. When I was firstdiagnosed with Vestibulitus, this is the first thing my gynecologist gave to me. After oneweek the pain was gone. I went pain free for about 3 months until I went to the gym. Thenext day the pain came back. Again he prescribed the clobetasol and again the pain wentaway but this time it took about 3 weeks to get rid of the pain. I was pain free foranother couple months and then the pain came back again and this time it was worse thanever. He tried the clobetasol again and this time the pain wouldn't go away. Finally hestarted me on Estrace because the skin around the vagina became so thin. I believe thatthis was a temporary fix to my problem. It is definitely worth a try but if it comes backafter you go off of it I would be leary of trying it again. I am seeing a new specialistnow and he told me that all of that made my condition worse. I'm not saying that thisisn't what you should be doing but i would be careful about how long you are using it.Currently my specialist has me on 50mg of Elavil a day and Diflucan once a week. Afterbeing in constant chronic pain for about 8 months I am finally able to live my life again.The pain may come back about once a week but now it is only for about 10 minutes and itgoes away. Good luck to you and if you want to talk to me more, feel free to email.
CommentLadies thank you for all the advice! I am only using the steroid for a short period, mynurse has told me about the thinnning of the skin after prolonged use. I will just enjoymy few weeks while they last. Has anyone's experience with Vestibulitis actually been BETTER after vaginalchildbirth?? My nurse seems to think it will stretch the area and I may have less pain. Of course you have to have intercourse for this all to happen, so I will just have tosee!
CommentHello ladies and fellow "sufferers" Been trying to go through all the entriesbut it is almost 1:30 AM Calif time and I'm tired as usual and can't sleep, Interestingcomments regarding topical steroids and thinning of the skin in the long run. If thedoctor's know this, why do they keep prescribing these? I would recommend going to a painmanagement specialist as they have (at least in Calif anyway, as it is actually againstthe law to deny pain treatment in this state) a lot of treatment options. Some tryNeurontin, a COMBINATION of 2 or 3 LOW DOSAGES of anti-depressants, biofeedback, andopiate narcotic therapy. There are also devices which are surgically implanted called"neuromodulators". These were originally developed for women with urgeincontinence but they are finding success with pain control in the entire pelvic region.The web sites for ICA, ICNETWORK, Vulvar Pain Foundation and the National Vulvodynia Assochave tons of printed info re these devices. I am currently waiting for my insurance co. toapprove the device Interstim for me. I won't hold my breath as they deny everything. Howironic...I am a nurse (disabled and can't work, but nonetheless a nurse) and now I'm onthe other side of the fence as a patient and am treated like crap by most of the medicalestablishment and my complaints dismissed. My current urologist that I am being forced tosee is the worst offender! As I stated before, we are at least 4 million strong in thiscountry alone, we need to start making some noise! I have been reading some of theprevious messages where some of you have been forced to suffer for 20 years! To me that isjust absolutely unacceptable. I wish all of you pain free days, and if that isn'tpossible, at least some pain free moments. Laura
CommentHello! I've been suffering from vulvodynia for the past four years, but have onlyrecently found out what the problem is. I was so glad to find this site on the internet! I live in Canada and am looking for a doctor here who treats vulvovaginal disorders.Does anyone know of a good clinic? I would prefer something in the Toronto area, but wouldbe willing to go anywhere in the country if there was a doctor who could help!
CommentA lot of people have talked about funding for research. For a while the Nat'lVulvodynia Assoc. had put on their website info about how NIH wanted to do research withvulvodynia. I actually called the person who had come up with the idea to do a study onvulvodynia. He said unfortunately no one had yet submitted a good research model. Iunderstood that to mean that the government would try to support research on this disease.Why aren't there any researchers who want to discover the cure fr this? There must be adoctor that sufferers from this, or someone related to a doctor that must want to take aninterest. Refering to the fact that Oprah has not mentioned vulvodynia as one of the posibilitiesfor the lack of sex drive...that upset me too. One last thing, I was reading some magazine...Glamour or Cosmo or something...I wish Ihad payed attention to which. Anyway it was talking about pain with sex, and it mentionedvulvodynia as one of the options for causes. Little by little I hear more mention of it.
CommentJust wondering if any of you that have vestibulitis or any condition of the vulva havebeen also diagonosed with an immune definicy disorder? And to the entry on the women withirritable bowel yes I believe the 2 are connected as well as immune disorders and gastricproblems. I belive these are all related and my research on immune disorders and from whatmy GYN from Ia City has found he belives it all too. Hopefully there will be relief and/ora cure soon. Good Luck to All! Chris
CommentDoes anyone know of a good doc in the Seattle, Wa area that is up to speed onvestibulitis? I've already seen the nurse practitioner who works with Dr. David Eschenbachand would like to get a second opinion on the *treatment plan* (I believe the diagnosis!). Also, has anyone else experienced an infection in the cervix that the docs believe thedischarge from this infection is what's aggravating the vestibulitis? I would love it ifyou wrote to me and told me how the infection was treated and if it was fully taken careof, or if it came back. Thanks, all! And good luck to everyone in hanging in there! Cheers, Viv
CommentHi everyone, I am at home recovering from knee surgery and thought I would have a lookon the web to see if there was anything "new" about the treatment of vvd. I havebeen suffering from this condition for (actually hard to put a date on it) about 4 years.This is the first time I read these notes from other women sufferers. I am absolutelyamazed at how many of us there are. I have found a few ideas that I'll try and see if theywill be helpful to me. Personally, I have found that if I avoid the foods high in oxalatesI do better, however, it is hard to avoid them altogether. Does anyone know where to getthe "OX-BLOCK" that Dr. Clive Solomon has mentioned in his site? Also the Aveenobaths help, as well as soothing ointment such as Aquaphor. But the pain, redness andburning always returns (especially after sex). I must say I found Heather's note about hermother and the HRT most interesting. Remembering the timing when this all started for mewas about the time I started taking hormone replacement therapy after menopause about fouryears ago. Very interesting indeed and I will be asking my dr. about this. Also, the ideathat it is some mysterious unknown, unnamed bacterial infection is interesting as well. Ithink at this point nothing should be overlooked or uninvestigated. I agree - it is timethere is some serious research done on vvd and whoever said that if it were a malecondition - it would have a cure by now is absolutely right! I am willing to put up somemoney for an ad as Lauren suggested. Unfortunately, I don't have alot of extra time but ifsomeone wants to get a project of some sort started - count me in!! As far as"O" goes......I read just today that 99% of the women who suffer from vvd arewhite, so of course she wouldn't have any idea.........how lucky for her but what aboutthe rest of us? Everyone pray that a real cure will be found soon. In the meantime, have apainfree weekend. Linda
CommentHello all. I would like to get as much feedback as possible. I went to a doctor in SanFrancisco Ca, Dr. Metzger, great reputation. She specializes in vulodynia and other majorwomen vulvar and bladder problems. She is very confident in her lazer surgery andsuggested this to me. She said I could speak with other women that had this, which I justspoke to one who feels really good now. For her she had to also do the internal myofasial(sp?) therapy to release the muscles. Please if anyone has had lazer surgery or has anyfeedback communicate it to me. She said we could start with food allergy testing and if Iwanted to first try the guaifenesen, I could. I have tried so many things so I am ready totry something that works. I heard women actually fly here to see this doctor. I do knowthat there is a healing time following the surgery(lazer). Of course, it is not overnight.I hesitate to try the guaifenesen because then I would have to change everything fromskincare to food intake....because so many things block the effectiveness of themedication. Please send any info-I am asking about lazer not the other surgical process,which this doctor said she would never do. Thanks in advance for your time. Julie
Commenthi ladies. i am 27 years old, been married for a year and half and have suffered fromvestibulitis the entire marriage. like others i have read about in the guestbook, i ripand tear along with itching and burning. my husband and i have never been able to havecomplete intercourse. this is getting very frustrating. i have had treatments of diflucanand premarin cremes, neither accomplished anything. three weeks ago, i was put on sporanoxto treat a slight yeast infection along with a cleanser, aquanil and promasone ointment.this cleared up everything. but i still ripped when trying to have intercourse. i want toknow if anyone has tried the home kit from Dr. Glazer? does it work? i am gettingdesperate and so is my husband! please e-mail me.
CommentWhen I read the post by Joanne written a few days ago the mention of pain in the pubicregion captured my attention. My pubic region hurt in the same way that you described. Ialso had extreme pelvic, buttock and lower back pain too. The groin area also felt that itwas being pulled and pinched. After years of searching and trying all of the treatments Imanaged to find relief. Yet I still felt that I was in too much pain. I wasn't willing toaccept the prognosis of my P.T. that this was the best that I would be able to feel. Mydoctor referred me to an M.D., who specializes in a treatment called prolo therapy. Hefound that the ligaments that supported my pelvic sacriliiac region were not supportingthe joints properly. The whole region was unstable. He directly injected a solution ofB-12,dextrose and anasthetic into the troubled regions including pubic area. To make along story short I'm 90% recovered. This is the best that I've been in years. I even wentriver rafting with my family last week. |Even six months ago that would have beenimpossible. I share this to offer hope. Recovery is a reality. If you have pelvic floortension and have not obtained significant relief from biofeedback and physical therapyprolo therapy may be an option. Take care. Let me know if I can answer any ?'s . Mary Ann
CommentSite is user friendly and informative as well as interesting. Only two visits so far,but plan to read everything closely and make critical comments on the next visit. Thanks.
CommentWould really like to see a way to DELETE guestbook entries. I made an entry severalyears back that keeps popping up in the major search engines. Very embarrassing. Is theresomeone I can contact to delete my entry? There does not appear to be a webmaster link onthis site. Would be very helpful. Thank you.
CommentI am 17 and have just been told I have the diease.....How dose everyone deal with thepain....It hurts so bad....In the low oxelate diet it says I should not eatchocolate....Dose this mean just like chcolate bars...or cake...or both.....I was giventhis cream that really burns has anyone else had this problem?????? Plear e-mail me back I need all the friends, help, support I can get..... Thanks so much
CommentI am 17 and have just been told I have the diease.....How dose everyone deal with thepain....It hurts so bad....In the low oxelate diet it says I should not eatchocolate....Dose this mean just like chcolate bars...or cake...or both.....I was giventhis cream that really burns has anyone else had this problem?????? Plear e-mail me back I need all the friends, help, support I can get..... Thanks so much
CommentHas anyone ever used hypnotherapy for pain control? I am very interested in using thisalong with low oxalate diet and meds. Has anyone ever been hypnotized? Please respond onthe guestbook, I will be checking. Thank you!!
Commentdoes anyone know of a good dr in the pittsburgh pa area? i am also close to youngstownoh and would travel to cleveland oh if necessary. please reply-would appreciate it sooooomuch
CommentHi everyone! In response to the question for those who have been diagnosed also with anautoimmune disorder...I have Sjogren's Syndrome. It has been made worse by the ravages ofIC and Vd/VVS. It was the last piece of the puzzle that was missing. There is no cure oreffective treatment for this disease. It can attack the entire body, like Lupus, but forme it has primarily attacked my eyes and slightly less my mouth. Sjogren's causes the bodyto literally "dry up"- no oil, no tears, no saliva, no mucus anywhere, etc. As Isaid to some one recently, I feel like the poster child for rare/incurable diseases!
Commentto Melissa who asked about after a vaginal birth. I also had a doctor who told me"I was tight" down there and a vaginal birth might stretch me out. I gave birthvaginally in November, and the pain is much worse now. Although, I am still nursing myson, and I have heard the hormones from that can interfear aswell.
CommentIt seems that everyone has symptoms that just occur. I was fine until I had my baby.Ever since, I've been in extreme pain during attempted intercourse. We have triedeverything to cure me. Nothing works. Anyone else out there with pain like this due tochildbirth? If so Email me at: ginajellybeana@netscape.net
CommentHas anyone been to a Dr. David Foster in Rochester NY? (I believe he was formerly outof John's Hopkins) or a Dr. Stefanie Pincus,(Buffalo, NY) derm specializing in treatingVulvodynia patients with skin disorders. My mom was diagnosed w/ Lichen Simplex Chronicusand we are trying desperately to locate a doc who can successfully treat her. She is in somuch pain and ready to give up!! Any help would be greatly appreciated!! Thanks!!
Commentamber, i have used several cremes, but had no luck, in fact they seemed to make thingswork. i found out i was allergic to parabens. this is in soaps, shampoos, make-up, and inany lotion or creme. ask for a ointment w/o parabens and maybe you will get some relief.
CommentHi. This is my first time to the website. For over a year I have been suffering and myOBGYN has had not a clue as to what is going on. At first I had the symptoms of a yeastinfection and tried multiple over the counter drugs as well as diflucan and otherprescription creams. Nothing worked. I have been tested for all STD and all of my culturesfor bacteria and yeast have come back negative. Now, intercourse is painful. It burnsduring and after. Other than that, my symptoms are very mild. The only other time I noticeit is when I go to the bathroom , I notice mild discomfort when wiping. It has gotten muchbetter since I have been wearing tampons instead of pads during my period. It was so badat one point that running and even walking was painful. Does this sound like anything thatyou have experienced?? I was also told about something else called tetra.. something. Hasanyone ever heard of that??? Please write back and let me know if this sounds likevulvodynia. I am planning on going back to my OBGYN and bringing this info. with me. Ilive on long Island, NY so if any of you know of a good DR. in the area please let meknow. Thank you for taking the time to help me!! Candice
CommentTo Olivia who found success with apple cider vinegar -- I won't scoff at you tryingthis. It's considered a cure for all sorts of problems. But when you say "at first Iused it straight from the jug", do you mean you used it topically? How many times aday?
CommentHi Ladies-Well a few of us have been chatting via email and we have come up with asmall survey. We are all sufferers and none of us are MD's. But most of us feel that weneed to take control of the situation in some way. Since there is virtually no researchthat is ongoing and continuous, and since there seems to be a few different strains ofvulvodynia, we have put some questions together. Perhaps after a few months of compilingthe answers to the survey-we might find some common thread. I make no promises and as youcan see from my past entries-the wheel is always turning and I have a few things in theworks. If you'd like to fill out the questions we have put together-and add more questionsto it-please contact me at vulvodyniapain@aol.com-Wishing you pain free days!-Lauren
CommentHi to all. Just found some very interesting info that all vulvodynia sufferers,especially those considering surgery, should read. The article talks about how OB/GYN'sspend far less time on their surgical training than many other doctors in different areasof medicine do!!! Does not surprise me in the least!!! But after reading it, it infuriatedme to no end!!!!! You can find it on the MSNBC.com Home Page today. It is listed under theHealth category, under Healthy Adam and Healthy Eve. It is titled "Is Women's HealthCare All It's Cracked Up to Be?" Sorry to give more bad news about these crazy doctors...but the more knowledge we havethe better decisions we can make for ourselves!!! Take care.
CommentHi to all. Just found some very interesting info that all vulvodynia sufferers,especially those considering surgery, should read. The article talks about how OB/GYN'sspend far less time on their surgical training than many other doctors in different areasof medicine do!!! Does not surprise me in the least!!! But after reading it, it infuriatedme to no end!!!!! You can find it on the MSNBC.com Home Page today. It is listed under theHealth category, under Healthy Adam and Healthy Eve. It is titled "Is Women's HealthCare All It's Cracked Up to Be?" Sorry to give more bad news about these crazy doctors...but the more knowledge we havethe better decisions we can make for ourselves!!! Take care.
CommentHello, This is my first entry to the site. My pain is primarily in the pubic hair andespecially over the pubic bone. Sex is only uncomfortable because of the irritation to thehair. I have used antidepressants, anticonvulsants, Diflucan, lidocane jell, undergonespinal blocks. I am currently using a cream called Emla. It numbs the area for many hoursand lets you get your mind off of IT. This is a prescription drug that I have not seenmentioned on this site. Has anyone else heard of this cream or know of any negative sideeffects? You may e-mail me at the address above or I will check the site for info. Thanks
CommentI was given a prescription for Emla too, but only tried it once. I found it almostimpossible to use, since you have to apply it and keep it covered for a long time to makeit work. Have you found a trick to apply it? And do you actually get several hours ofrelief? My doctor told me it would give relief for an hour or two. I also found that itburned alot before some of the numbing set in. My doctor didn't mention any negative side effects (though I thought sitting immobilefor a long time with the cream and saran wrap on the "affected area" wasnegative enough for me...)
Commenti used emla once before i had a biopsy done to numb the area. if i remember corectlythe package insert said it is not recommended for mucous membranes. i don't know whyspecifically it is not recommended, but i would contact the manufaturer before i would useit daily.
CommentKathy, I use EMLA. My doctor didn't say anything about covering the area afterapplication. I apply a small amount. I have to say it does burn -- maybe 5 or 10 minutes,but that subsides and I'm numb. I try to only use it when I'm really hurting.The burningfor a short time and the numb feeling of a couple of hours, is worth it. At least for me.Most of time, I apply Lidocaine. Doesn't burn, but it also doesn't numb the area likeEmla, but helps.
Commenti used emla once before i had a biopsy done to numb the area. if i remember corectlythe package insert said it is not recommended for mucous membranes. i don't know whyspecifically it is not recommended, but i would contact the manufaturer before i would useit daily.
CommentHello, My Emla experience: Burned for a few minutes, then gave blessed releif frompain, for maybe 2 hours. This worked maybe 10 or 12 times. ( I "saved" it forespecially painful times over the course of 2/3 weeks) Then, it quit working, only stungand never numbed. My pharmacist said it could cause heart palpitations. As it is only a"bandaid" and quit helping me anyway, I put it aside. I tend to over-react tomedications anyway so it wasn't worth it to continue using it. Hope this helps someone outthere.
CommentHello, Thanks to those who responded to the use of EMLA. I do not apply the cream onthe mucous membranes. Most of my irritation is located where ever there is pubic hair. Myvaginal opening has never been part of my problem. I find that using the cream in verysmall applications (without covering the area) seems to numb or calm down the nerveendings. I get relief for up to 8 or 9 hours. I see a specialist at the University ofMichigan-AnnArbor and she is now suggesting a product called ELA-Max. She said it worksquicker and does not instruct you to cover it. I will be getting a new perscription for itsoon. Right now a tube of EMLA is costing about $50. One tube has lasted about 2 months. Ido not use it daily but it gives me some control over this demon. Maybe it can helpsomeone else. Sallymut
CommentHello all, I have posted here once before, but I just went back and cannot find mypost. Anyhow, I come to check in here every once in a while. I suffered for over two yearswith vestibulitis although I continued to get no help from my doctors. I went to threedifferend doctors complaining of these symptoms. you'd be surprised at how many doctorshave never ever heard of this affliction. makes me think about 'coming out' and fightingfor us ladies. My symptoms finally got so bad that I went to a free clinic by my house. Heimmediately diagnosed me with vestibulitis and referred me to the most wonderful doctor inthe world. So far he has changed my life. I live in CHicago, and he is from the northernsuburbs. I say so far because I have been (dare I say CURED) for over eight months now. Heshowed compassion and knowledge and even was able to tell me how little docs know aboutthis. I will talk a little about what he did for me. First, he put me on 30 mg ofImiprimine. This may be what has helped so much. This is Tofrinil a form of tricyclicantidepressant. They dont use it in this low of a dose for depression, but they use it for'unexplained' pain syndroms such as fibromyalgia, migraines, and even for kids who wet thebed. His second recommendation was to STOP USING CREAMS ON YOUR VAGINA!!! Women continueto use creams otc and perscribed by docs. Stop this. your doctor does not know about thiscondition, so he perscribes a cream that obviously is not working. The creams mask thesymptoms, you feel better for a while, but sure enough they are not clearing up theproblem. Second, use tide free. THis doctor seems to feel that Vestibulitis is some formof irritation from chemicals or dyes, OR CREAMS> I even read a woman who's onset cameafter using a yeast infection cream. I think this is where mine 'came from' too. If youget a yeast infection, try diflucan. It is a bit more dangerous as far as your live goes,but this is a low risk. When you take a shower, use only nonscented soap. Neutrogena makesa nice one. it is white, but I cant remeber what it is called. it is for sensitive skin.Give it a try. When you wash yourself, do not use soap in there. This grossed me out atfirst, too. But after the problem went away, I now wash there with no problems. WHen youwash your hair, bend over so that none of it runs down your body into your vagina. it canrun down both the front and the back. Stop trying to have sex until well after yoursymptoms have subsided. Rinse with water after urination. Sleep naked (no underwear). Thishas helped me 100%. I have been symptom free for eight months, and I owe this doctor mylife. I have nonpainful sex although I do still use KY jelly. Also when I have sex I haveto make a conscious choice to relax. you ladies know that when we have sex it urts so muchthat we tense up which makes the problem much worse. Please talk to your doctor aboutthese suggestions and come up with something to help you. Stop using creams on yourvagina. If you get a cut, it heals much faster when you let it air, right? ALso this doctold me that the vaginal skin is the most sensitive part of the human body next to theeyeball. you wouldnt put creams and lotions on your eyeball would you? Feel free to e mailme if you need this doctors name, or if you need anymore suggestions. this has saved me.
CommentHi everyone. I am new to this site, I started the symtoms after having my secondchild... I started with uncontrolable itching and it now is oh god it is all bad to thepoint where if i did not have my children i would have killed myself by now, i still thinkof killing myself. i have horrible itching,stabbing pain if anything touches me downthere, i have sores like blisters and open blisters,i can not get comfortable at all, Ihave thick skin (swelling) i got fired from another job because of too many missed days ofwork. i cant enjoy life anymore. i have had this for 2 years now and i am only 30,i havealot i want to do and i cant do it,, i am so scared that this is how the rest of my lifeis going to be like.if it is i dont want to live anymore....... WHY CANT WE GETDISABILITY? i mean this shit obviously ruins our lives and there is no cure,we keepgetting fired from job to job,we lose our loved ones, our sex drives...i am sorryeveryone, but this is just killing me inside and out,why me? why anyone?i would not wantthis on my worse enemy please help me kope through this i am so scared????? right now i amgoing on 4 nights without sleep everytime i try to go to sleep i have sharp stabing painwhen my lips touch, almost like the hairs are poking me and bad itching... I have tryedthe benadrle cream, that helps if you don;t have open sores fron scratching or what ever,dermaide aloe, that does not do much, clobetasol cream that helps with the thick skin.please someone help me sandra
CommentThis posting is especially for Sandra (July 20). Sandra, please hang in there. Iliterally walked the floors night and day for an entire week, unable to sit or lie down orsleep because of the constant burning. I didn't know a person could go that long withoutsleep without collapsing, and I feel that I was very near collapse. What finally gave meenough relief to sleep was prescription pain killers and ice packs. You might ask yourdoctor about trying an anti-depressant. Elavil was what helped me the most, and I onlytook 30 mg a day. This was prescribed by a dermatologist. He said that pain, itching,burning, etc. are all related reactions of the nerve endings. Anti-depressants aresometimes prescribed for shingles to help control the pain. Anti-depressants do not workfor everyone, and it usually takes at least two weeks before you begin to see adifference, but it might be worth a try. I was diagnosed 2 1/2 years ago, and there's ohso much more I could say, but I will save that for another time. My prayers are with you,Sandra, and with all the other sufferers out there.
CommentReposting this message. If you haven't sent me your answers yet, or this is the firsttime you are reading this and would like to participate, shoot me an email! Thanks-- Hi Ladies-Well a few of us have been chatting via email and we have come up with asmall survey. We are all sufferers and none of us are MD's. But most of us feel that weneed to take control of the situation in some way. Since there is virtually no researchthat is ongoing and continuous, and since there seems to be a few different strains ofvulvodynia, we have put some questions together. Perhaps after a few months of compilingthe answers to the survey-we might find some common thread. I make no promises and as youcan see from my past entries-the wheel is always turning and I have a few things in theworks. If you'd like to fill out the questions we have put together-and add more questionsto it-please contact me at vulvodyniapain@aol.com-Wishing you pain free days!-Lauren
CommentHas anyone been to a Dr. Harold Wiesenfeld in Pitts PA? If so, can you tell me whatkind of treatments he recommends and what your general opinion of him is?
CommentI haven't been to this site in a long time. I just wanted to give some hope that youcan get over this. I had both of the surgeries (laser and vulvectomy) and 6 months ofphysical therapy after the vulvectomy. I am no longer in pain and can enjoy life again.Good luck to all of you. Please feel free to e-mail if you need encouragement or someoneto listen. jennifer
CommentIt's me again. Just wanted to let everyone know that there is a support group inAustin, Texas if anyone is in this area. Let me know if you need more info. jennifer
CommentSandra, I am sure you know that I and everyone at this site empathize and are worriedabout you. You sound very desperate right now. I can tell you that my sympoms over theyears come and go in waves. I am concerned about your "blisters" could they beulcers? Blisters would usually occur from herpes or a dermatological reaction to achemical. Ulcers would usually be caused by a bacterial infection. Do you have blistersall of the time? For months on end? Has any doctor bothered to do a viral or bacterialculture on the blister? Have you tried avoiding all soaps for a week to see if youimprove? I also think rinsing with water throughout the day might help. I know how insaneyou feel. The whole thing seems impossible doesn't it? I hope you get some relief.
CommentSANDRA, Maybe you have a bacterial vaginosis. My OB/GYN told me to use DOMBOROSolution. You can find this in any drugstore pharmacy. It is a antiseptic-astringent. Itcomes in powder form and you mix it with distilled water. you soak a clean washcloth in itand apply it to the whole vaginal area for 15 min. two times a day till it's gone. Itreally helped me. It kills any bacteria and germs that could be causing the irritation.Please hang in there. We are here for you. Laurie.
CommentA Ray of Hope for those with vestibulitis Recently, however, researchers may have found a cause for this painful condition. Astudy published in the American Journal of Obstetrics and Gynecology in February 2000showed that a genetic disorder could be to blame. More than half of the 68 women in thestudy with diagnosed vulvar vestibulitis were found to have this genetic abnormality. "In vulvar vestibulitis, something triggers inflammation, but then it doesn't goaway," says Steve Witkin, PhD, a co-author of the study and a researcher at CornellUniversity. The gene the researchers looked at is involved in ending the inflammatoryresponse in most women. But a lot of the women with vulvar vestibulitis have a rare formof the gene that makes them less able to stop the inflammation, Witkin says. These womenalso often suffer from other inflammatory problems such as nasal congestion. The study could be the first step to finding a treatment that works, says WilliamLedger, MD, another co-author of the study and a Cornell University gynecologist whostudies infectious diseases. Since anti-inflammatory drugs haven't helped, the hope is todevelop a drug to do what the defective gene cannot. But research funds are not plentiful,Ledger says, partly because the disorder takes a back seat to more life-threateningconditions.
CommentI need to know if anyone has job problems because of vulvodynia? because i am, i keepgetting fired because of missing to much work, but when it flares up i just cant handlethe pain and discompfort........ why is this not considerd disability? it is obviouslyhere to stay the rest of our lives please let me know...........thank you sandra
CommentI have been tested for every std that you can think of, I think the blister things arefrom me burning the (you know what ) out of the area.. it is the only way i can get itknum enough so i can fall to sleep. and from scratching myself like a dog with fleas :) ihave had 9 skin biopsys done too and nothing, no std's and no cancer thank you for beingconcernd, sandra
Commentto the person who was cured using chamomile: I looked it up and there are a coupledifferent kinds. Could you tell us what kind you used and the name brand? Would reallyappreciate it.
CommentFOr those of you that have a lot of otching, there is an herbal pad that may help - ithas not solved my problem, but on those days where itching is maddening, it has helped toease it - the only drawback of course being that you need to wear underwear, which canirritate all on it's own. Anyway, the pad is a chinese herbal thing called Empress'Secret, and it's made of soft cotton. I purchased mine through an acupuncturist in DenverCO - her name is Rita Cummings, telephone # 303-756-2737. Hope this helps! Good luck!
CommentThis is firstly for Nicki who asked in the previous guestbook whether anyone hadinformation on the effect of swimming in a chlorinated pool. I read in one of the earlierguestbooks an entry from a lady who said that they had installed a swimming pool at theirhouse, and that after 2 weeks of use her v.v. was gone. Perhaps it had something to dowith getting her PH balance right? The one thing which seems an absolute no-no is one ofthose pools which are heated to body temperature - lots of bacteria swimming in there too. Then just another bit of info - a friend who suffered repeated candida infections saysshe has never again had it after her husband had an operation to have his gall bladderremoved!! Her doctor says the two cannot be related - it must be coincidence. Still, thatis what happened. Good luck to you all out there.
CommentI agree with Stephanie (7/21) -- unless you are sure that a cream or ointment ishelping you, don't put anything on the vulvar/vaginal area. I was so desperate in thebeginning that I actually tried Anbesol and Blistex! Unfortunately, I was only addinginsult to injury. I also recommend learning to bathe the area without soap. This is a hardthing for those of us who believe cleanliness is next to godliness, but I think it's bestfor the area to remain as chemical-free as possible. One word of caution about productthat claim to be "free." I, personally, am allergic to Tide-Free and so is mybrother-in-law. I learned the hard way that just because a product claims to be"free" does not mean that you can't be allergic to it. I use Cheer-Free liquidand double rinse and line-dry my underwear. I also use "free" toilet paper andpat dry after a bath. I tried drying with a hair dryer on low (recommended by a nurse) butthis made my irritation worse. This condition makes us feel so desperate and"panicky" that we want to just rush out and try anything and everything that hasbeen recommended, but we need to be very, very careful and listen to our own bodies as wetry to find what works best for us individually.
CommentDoes anyone have the address for the Yahoo Vvd site? Can you post it here? Also aretheere any other groups that talk about vvd?
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CommentI'm so depressed. My vulvar pain has been really bad lately, so I went to thegynecologist today, hoping I just had another infection (like many vulvodynia sufferers,my symptoms started with a yeast infection). All the gyno could could find was some minorredness and irritation. Well, I can tell you the irritation sure doesn't FEEL minor. I'm23, and my pain started 2 years ago and has steadily been increasing in intensity. I needa doctor who's familiar with vulvodynia and won't think this is all in my head. I can seethis question has been posted before, but does anyone know of a doctor in Toronto who'sfamiliar with vulvar pain disorders. PLEASE?
CommentHas anyone been cured of their vvd by using antidepressants? Because I've been takingthem since May and it has helped 100%. But I just wanted to know how long other peopletook them for and when they stopped taking them. And when you stopped did the pain stayaway or did it come back? I'm only on 10mg of amitriptyline and my doctor says that that'slow enough to continue indefinitely but I'd like to go off it some day.
CommentThis message is directed to Lauren, who listed an e-mail address(www.vuvlodyniapain@aol.com) I have tried repeatedly to access this address and cannot getit to come up. This is to respond to your request for a survey you are compiling. You maye-mail me directly or post on the Guest Book and maybe I can figure out what I am doingwrong. Thanks.
CommentTO SANDRA -- you might try soaking in Epsom salts for the open sores. (This is oftensuggested for herpes sores -- it helps the healing process along and can reduce pain.)Also, I find just soaking in a hot bath can help the burning a lot.
CommentTo-trianek@hotmail.com-Antidepresants aren't a cure. They only mask the pain. I tookthem for the first three months until they stopped working. I really wish people on thissite would stop using that word, because there is no cure. This disease, can eventually goaway on it's own, or with a lot of help from your ownself, by taking care of your body,and trying very hard to retrain your brain, so that it doesn't recognize the pain anylonger. But that is a lot of work and can take many years to come to fruition. Again, thisis not in our heads. We did not make this up! But I have been reading a lot aboutretraining the brain. Read Vegitarian Times either June or July I think. There is anarticle in there about this concept.I have my good and bad days along with all of you andI completely understand how miserable it is when the bad is with us! So far I am seeing acorrelation between nerve damage and vulvodynia, but not enough surveys in yet to makethis determination and send it into my doc and drug company. Please keep sending me yourrequests for the survey. I need hundreds of responses if not more!
CommentNEW RESEARCH SHOWS A POSSIBLE GENETIC CAUSE FOR VULVAR VESTIBULITIS for the original scientific journal article see: Jeremias J, Ledger WJ, Witkin SS. Interleukin 1 receptor antagonist gene polymorphismin women with vulvar vestibulitis. Am J Obstet Gynecol. 2000 Feb;182(2):283-5. PMID:10694325; UI: 20158621 for the press release on the finding see: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ other research suggests thatplasma levels of interleukin-1 receptor antagonist can be increased by endurance exercise: Suzuki K, Yamada M, Kurakake S, Okamura N, Yamaya K, Liu Q, Kudoh S, Kowatari K, NakajiS, Sugawara K. Circulating cytokines and hormones with immunosuppressive but neutrophil-primingpotentials rise after endurance exercise in humans. Eur J Appl Physiol. 2000Mar;81(4):281-7. PMID: 10664086; UI: 20129960 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
CommentI am particularly interested in the Japanese study on endurance sports. But I'm unableto interpret it. Can anyone help? Is the impact to raise or lower the immune response? Isit a long term or a transitory effect? How does it relate to vvs?
CommentGianan, thank you so much for the websites with the research that was done aboutinterleukins!!!! On 6/15 I wrote a fairly long entry on how I believe that for some of usthe inflammation is due to interleukins, possibly in our discharge. A lot of people werevery negative of the fact that I blamed a bacterial infection as the antagonist. I knowthat study is not saying that the production of the interleukins is due to bacteria, butat least with this information maybe some people will have more open minds about mythought process. I was not just babbling, this was a well thought out deduction that Ihave come to believe over the years. Again, I trully believe that some of you have amuscular problem that is totally from different causes, but if rinsing and baths make youfeel much better, I don't see how the muscoskelital explanatioin could make sense for you.I know 3 other people that link this to a new sexual partner. I also think that possiblyif the vaginal flora gets out of whack enough it could cause this. Many of you have saidthat it started following antibiotics...maybe that would be enough to allow a"bad" bacteria grow out of control. I recently went to my doctor in NYC to getnew cultures done. When I spoke with him during my appointment he looked over my chart andsaid I have a profound lack of lactobicilli which may be the reason I am having troublerestoring normal vaginal flora even after aniobiotics that make me feel much better. Ifany one has rebound pain AFTER antibiotics, that would mean the antibiotics ARE helpingyou. Anyway, it occurred to me that the labs that your doctors are using, Smithkline andLabCorp, simply report back NORMAL FLORA. They do not break down what grows. That meansyou could be severly lacking in lactobicilli and not now it, and the lab could sayeverything is normal. I believe a lot of our pain is rooted in our genetic predetermined response toantagonists. Some people smoke for 50 years and never get lung cancer, they probably havegood genes. Some people get Chlamydia and have no symptoms, I personally had horriblepelvic pain and bad discharge when I had it back in college. I agree there is a geneticlink, but I do not agree that our bodies just do the wrong thing. Our bodies areresponding to something.
CommentHi, Those of you suffering with vulvodynia, I would love for you to visit my site at:
CommentI am extremely interested in this connection between using yeast cream (monistat) andVestibulitis. Many woman have claimed that the onset of this problem has either come froma yeast infection or from 'treating' a yeast infection. Okay, here's the deal, My problemstarted with Monistat, and if this is the case, we need to get together, hire a lawyer andsue their asses. i don't want the money, i would force them to put warning on theirproducts, and to donate money (A LOT) to finding help for this condition....Are you withme??? Stephanie
CommentI hope a lot of us are contacting Lauren regarding the survey. It is one way to comparesome of our symptoms and causes. It might be a way to help ourselves and the Drs find away to treat this. Hopefully she will get hundreds of responses so actual data can bepresented to Drs and companies, not just one or two opinions. It will only take a fewminutes but may save us all a lot of suffering down the road.
CommentJennifer: I personally don't believe that vulvar vestibulitis syndrome (vvs) is anysort of STD. This is based on what I've read and my own personal experience. I believeI've had this since childhood. It came and went sporadiacally until I got married andstarted having intercourse more frequently (seems the more stimulation in that area theworse it gets). I will grant that a congenital STD is not out of the realm of possibility.~~~~~~~~ To the person who wanted more info about the 'exercise' article: This is verydifficult material and I have not yet had a chance to read the entire article; I mentionedsimply because it provides hope for a relatively safe way to (perhaps) lessen symptoms.{Always check with your doctor before starting an exercise program}. Cytokines arechemical messengers involved immune response. Interleukins are one class of cytokines. Themechanism of action of cytokines and their interactions with one another are extremelycomplex. Some are pro-inflammatory and some are anti-inflammatory. My interpretation isthis: the amount of interleukin-1 receptor antagonist (the substance produced by thefaulty gene referred to in the first study I mentioned) can be increased by enduranceexercise. Sometimes having more of a biological substance can make up for defects in howwell it works (sort of like using more cheap dish soap to get the same effect as expensivedish soap). This is all speculation on my part; however, I do intend to get a membershipat the Y this week. (I do *not* intend to use the stationary bikes)
CommentHi, first time i am posting. Back in the Tenth Guestbook, it was mentioned that Dr.marinoff had an 85% out of 200 women success rate with surgery. Well i am of the 15%.Surgery did nothing for me, at all! But years later I was treated with Tegretol andAntidepressants and that works wonderfully. PS i also have pudendal nerve damage.
Commentthe exercise thing again: effect may be transient only; I'm still joining the Y.
CommentWith all the different symptoms, treatments and results we're seeing, you have towonder if we're all really dealing with the same disease... To Grianan, Jennifer and others who are pursuing the route of a bacterial cause -- I'dlove to get more info and input on this angle. Anyone had any treatments that seem to behelping? After seeing many doctors and trying many treatments, I'm now seeing a nurse practionerwho specializes in vv and says she believes the cause of my problem is"non-gonorrheal cervicitis" which causes a discharge with excessive white bloodcells. She put me on one long dosage of Augmentin (major antibiotic) which helpedtremendously (discharge gone and pain almost entirely gone). But a few days after the antibiotic dose was over, the pain and discharge were back.She put me on another round of Augmentin, which wasn't as helpful. But again, after it wasdone, the discharge came back with more intense pain. To me, this says that there IS something wrong in the vaginal "environment",but I'm having trouble getting much info from her on it. She says its a bacteria that noone is able to isolate, thus are unable to find a treatment to combat it. Is this possible bacterial cause related to the PH imbalance women have written abouthere? Has anyone had any luck with any kind of natural treatments for the discharge thatseems related to the pain? (My specialist says no dietary and herbal treatment can tacklethis. I'm not buying it. She's definitely of the "chemical" school of medicine-- use a pill or a shot to deal with symptoms. I have to believe that there's a morenatural way to get the body back in balance.) Kathy
CommentOne more time: It is my opinion that vulvar vestibulitis syndrome is *NOT* caused by aninfectious agent, either bacterial or viral.
CommentIn response to the bacteria speculation -- when I was first diagnosed 2 1/2 years ago,I did have a bacteria to show up in my vaginal culture -- klebsiella. I had never heard ofit before, but apparently it is a common cause of urinary tract infections, particularlyin institutional settings. The only other person I've seen mention this was"Lyn" back in the 7th Guest Book (12/18/98). Two cultures in a row showed"heavy growth" of klebsiella. But after two rounds of Keflex, it was still thereand my gyn did not want me to take any more antibiotics. He didn't believe the klebsiellahad anything to do with my vvs and that more antibiotics could just make it worse. Iwanted to kill it and get rid of it, but he said no. So, it's possible that I still harborthat bacteria. However, my pain level has greatly reduced since my diagnosis and issometimes almost non-existent. Therefore, it would seem that either my own immune systemhas fought it off or that it was not the cause of my vvs after all - ???
CommentJennifer, I live in Austin, Texas, would you please send me information on the supportgroup here? I have v v and IC. Both diagnosed this year, but had it for a long time.Misdiagnosed all these years for the IC has given me irreversable damaged to my bladder.The v v, I suffered a long time with no doctor I went to knowing what the heck I wascomplaining about. Sad but true, someone mentioned that these pains come as a set, sooneror later, most end up diagnosed separately. But some time down the road, you realize thatyou do have a set of pain problems. Jennifer, do you live in Austin too? Who is yourdoctor? Do you go for PT for your pain? You may email me directly since I don't thinkanyone else lives in this HOT State. The weather is so hot right now, you melt before youcan get from your front door to you car. I hope to hear from you soon. Terry
CommentWith the recent discussion regarding interleukins, (which I know very little about) -has anyone read the site "eat right 4 you blood type" site? Dr.D'Adamo haswritten about the role of interleukins quite extensively. Thought it may be of interest.
CommentHi... I'm new here. Today was the first day that I found this site... thanks to mywonderful gyn-urologist. His name is Dr. Charles Butrick for anyone living in the KansasCity area. If you want more info... look up the following site: Anyhow, I told him the I kept looking on the web to find info on post-hysterectomysyndrome. Which is one of my three problems affecting my pelvic area right now. So he toldme to look up Vuvlvodynia then look at Pelvic floor muscle dysfunction. And that is whathas bought me here. I've been reading different pages talking about it. And then for thepast hour and a half I have been reading the Guestbooks here. I'm in shock... guess that is the best way to put it. Someone explained that they felthappy to know that there is a name to what we have... but was also sad because there isn'ta cure for it. I'm feeling just like that... finally happy that there is a name to mysymptoms, but so depressed because it adds another problem to my health problems that cannever be cured. First I started with depression, then migraines, and within the last monthI have finally been given the next three problems. I have PPS.. Pelvic Pain Syndrome, IC..Interstitial Cystitis and now this. The last couple of months things are only getting harder to deal with... Since not muchis known about any of my health problems. And then family and friends don't understand whyI always feel bad, which they show by comments and attitudes, and make me feel like ahypochondriac or something. I do have Doctors that have diagnosed my problems finally...The proof I always thought would make things easier. But the friends are getting tired ofalways hearing something being wrong. So they are starting to pull away. How does one get the strength to keep fighting daily... when they are told they willprobably have this for the rest of their life unless a cure is found? I'm strugglingharder and harder everyday to get that strength... and am beginning to lose ground here.
CommentSandra, have you tried Burow's solution? It is very safe to use; it's not a drug. It'soften used for itching and pain due to skin irritations like bug bites. Go to any pharmacy and ask for Domeboro; that's the name of the stuff. The directionstell you to put it into water and then put compresses onto the effected area. I tried thatand wasn't real impressed w/the results. Then I decided to just pour the solution rightover the area. And it helped tremendously. I lay back on the floor or in the tub and justpour it w/a measuring cup (the spout helps you "aim" a little better). (-: Well,that was 2 years ago. I still have vulvodynia, but thank the Lord, it's not nearly assevere as it used to be. I attribute that to the Elavil that you've seen mentioned manytimes in these guestbooks. Elavil really has helped me a lot. But when I get the painfulflareups, I still use the Burow's solution. It has helped me greatly. Sandra, this stuffis very safe. Try it and see if it helps. You're in my prayers.
CommentI JUST WANT TO KNOW IF ANYONE IS ON DISABILITY FOR THIS VULVODYNIA????? PLEASE LET MEKNOW.. I WAS TOLD THAT I COULD GET ON IT,, BUT I HAVE TRYED TO FOR THIS IS MY 4TH TIME NOWAND I KEEP GETTING DENIED, THE SOCIAL SECURITY PEOPLE SAY THAT THIS IS NOT DISABLINGENOUGH FOR SSI,,,, BLANK BLANK THEM I WOULD LOVE TO SEE THESE PEOPLE LIVE WITH THIS SHITAND KNOW THAT THEIR IS NO CURE, AND HAVE THEM KEEP LOSING JOBS,FRIENDS, LOVERS, AND TOLDIT IS NOT THAT BAD, YOU ARE SYCO, YOU NEED MENTAL HELP..... OH GOD I AM SO SICK OF ALLTHIS,,I WAS TOLD BY A CO-WORKER THAT IF PEOPLE WITH HERPES CANT GET DISABILITY, WHY SHOULDI???? I SAID THEY HAVE A NAME, AND A CURE TO KEEP IT FROM RUINING THEIR LIVES,,,I DONTPLEASE LET ME KNOW IF I COULD GET DISABILITY THANK YOU LOVE YOUR FRIEND SANDY
CommentI read that several of you say that your vv symptoms get worse with your period. Isthere anyone for whom it gets better during your period? (For me, it does!). Then when myperiod is over, it goes back again. thanks for your input. Hang in there ladies. nicki
CommentI was just wondering....all of the people who think monostat created this problem, hadyou had the yeast infection diagnosed by culture or microscopic analyzation. I am assumingthat you either self treated or a doctor looked at you and guessed it was a yeastinfection. When I moved to Florida I was stunned to find out that most doctors there don'tuse or do not even have a microscope in there office. I am afraid that you were comingdown with vvs, and it was progressively getting worse during the time you were using themonostat. I am very interested to know if my assumptions are wrong. I think the woman whohad the idea of fighting in court to get a warning has a brilliant idea if this is reallycausing the vvs for some people.
CommentSandra, it's Callie again. When I first got vulvodynia, I, too, lost a job. I, too, wasMISERABLE every day and very depressed. I thought there seemed to be no hope of evergetting better. Please, understand that though there is no "cure" as yet, thereare definitely things that make it much, much better. After speaking on the phonew/another lady who has had it for a long time and learning that for most women it getsmuch better, I felt a ray (a small ray, yes, but a ray) of hope. That helped me a lot. Well, anyway, I did a lot of research and tried things that I knew couldn't really hurtme, like the Burow's solution. It gave temporary relief, but then I decided to try theElavil. I cut the prescribed starting dose (10 mg) in half until I could tolerate movingup to 10 mg, and went up 5 more mg about every 4 days. I take 75 mg a day now at bedtime.If Elavil's side effects seem too hard to adjust to, there are other meds in that sameclass that work well for some women; Nortriptiline (sp.) and some others. Ask your doctor. Before I got on Elavil, though, I, too, had wondered about disability, because I feltmy ability to hold down a job was gone forever. I know exactly how you are feeling. Andthe more I thought about it, the more depressed I got. But then I started taking Elaviland slowly began to feel a little better. I still didn't think I could work, though, and Istill felt depressed and like my life was all washed up. But then I started thinking aboutwhat I could do (jobwise) where I wouldn't have to sit (cause sitting for long periods waswhat made my vulvodynia feel the worst). I decided to try a job in retail (totally out ofmy field as I've been a professional for many years). But I thought what have I got tolose? And I got a job, standing all day. You know what, Sandra, it helped me emotionally,just to know that I could do something (even if it wasn't in my career field). It was astep for me, and I haven't regretted it; though now I have sore feet {-: Anyway, just getting up and getting dressed and putting on my makeup, fixing my hair,and looking nice and BEING AROUND PEOPLE helped me tremendously. I felt as if I couldfunction again. And it has helped my vulvodynia. Before I went back to work, I would betotally concentrating on what was going on "down there" and it made me feelworse as I sunk deeper and deeper into depression. Well, so anyway, I still did not answer your question about disability; perhaps thereare steps that can be taken that way. But also, remember, feeling a part of themainstream, getting out, dressing up and feeling pretty again can help your self-esteemgreatly and thus help your depression, and your physical well-being. I've gotten very long-winded, without really meaning to. Just please don't give uphope; don't believe you're all washed up. You're not. And all of us at this web site care.You're in my prayers, Sandra.
Commentcallie,,,, it is sandra again, i am a hair stylist, so i could stand and sit all ineeded too,but on the days when i am so bad and can't hardly walk or tolorate it, i haveto miss work. i have no clue what else i can do
CommentSandra, are you still having problems w/the sores? What does your doctor say - have youconsidered a dermatologist? It seems that w/the sores, this needs to be gotten undercontrol first. Also, what got me to try Burow's solution in the first place was rightafter a biopsy - which, of course, leaves a sore. I used it, and it brought a lot ofrelief. But anyway, your sores may be indicating something other than vulvodynia - whichif I understand it right - means painful vulva w/no known cause. But there are skindisorders that can occur in the vulvar area. These, I believe, are treatable. Anyway, if they're treatable that would give the relief you need; if not, the Burow'smay give you enough relief to stop scratching. It seems somehow you need to get enoughrelief to be able to function again. About the disability thing, I don't have any information about how to go about this.Surely someone out there knows. Does anyone have any ideas? Keep your chin up, Sandra. I believe better days are coming for you soon.
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CommentTo Sandra & Callie, I have both IC and vulvodynia and am totally disabled due tothese "evil cousins". I have not been able to work sine 11/98. I told mydisability story earlier on this site and to Sandra and gave explicit details o her as tohow to get Soc. Sec. to approve her case. I am a nurse and now I am a patient. I know howto work the system and I know what SSD is looking for. As I mentioned to Sandra, you haveto be very GROSS and graphic and go into intense detail how vulodynia and/or IC affectsevery aspect of your daily life, plus explain in graphic detail also how the diseasesprevent you from working, how they disrupt the work place, etc. Since she has been turneddown so many times I reminded her that it is a well known fact that if your disease is noton that "precious list of approved diseases" by Soc. Sec. those bast--ds willdeliberately test you to see how persistent you are in wanting to receive your benefits.Cruel but true. At this point Sandie needs a lawyer who only specializes in Soc. Sec. Ican't understand why she wasn't forced to go before an Administrative Law Judge. Sincethis is a Federal program I am assuming it is equal in all states. I live in Calif. andafter 2 denials that have been appealed, you automatically go before a judge and presentyour case, with more evidence, witnesses, etc. I even suggested she just start over. Itold her that my documentation was so gross and graphic and my goal was to make theevaluator so sick from reading about the hideous misery that they would be on the verge ofvomiting. It worked. After 2 denials and my case pending before the judge, my file wasreviewed even before the hearing and approved!!. I filed in early 1999 and was approvedMarch of 2000. I said I became disabled 11/98 when I was fired from my job for beingdisabled and a burden to the hospital I worked for. The Soc Sec dept felt differently.They back awarded me benefits and declared me a "vegetable" June of 1998 when Ibegan chemotherapy (DMSO treatments) for IC - which made me deathly ill. My ultimate goalis to always "get my life back" (hah) and I do want to work again (soc sec saidI am of no use to anyone basically) and I am seriously considering assisting people filefor Soc Sec and fill out those miserable forms for a nominal fee. I wont charge theridiculous prices lawyers do. Since I was a home health nurse I know how to paint a verygraphic and vivid picture of a patient. That's what you have to do when filing for SocSec. For most of the questions I attached anywhere from 5-10 pages of response perquestion!!! I also recommended Sandi go to a dermatologist and pain management specialistasap. She doesn't sound to me like she is getting competent care. There are so many medsout there, that in the right combination she very well could respond and fell 10 x better.She does not deserve to suffer like that.
CommentTo the person who feels better ON her period, I often do too. I asked my doctor aboutthis and he said it might be because estrogen levels drop to their lowest at this point.Estrogen causes pain. I said, well maybe we can use this clue, and he said no, we can'tgive you hormones. Well it turns out that hormonal imbalance can be a contributing factor. A woman can beestrogen dominant or progesterone dominant, and if you're estrogen dominant that usuallyspells a lot of problems. I took birth control pills for five years before quitting aftermy v.v. diagnosis. I am about to do a one month saliva hormone panel (naturopaths adnalternative doctors use these) to look at the hormones. Another thing: hormones have to dowith neurotransmitter levels. There is a very interesting article in the latest issue ofAlternative Medicine on "women's Hormones 101" saying that when sex hormones getconverted into stress hormones this causes disease. Apparently, there ARE natural ways tobalance out the hormones, and I'm on my way to a naturopath next week to look into thisand other factors. To Jennifer: I like your comments and deductions re the bacterial angle. I haveconsulted over the phone with an alternative MD/pain specialist who told me that v.v. wasindeed caused by bugs. When I got v.v. I had had bacterial vaginosis just before that, anew partner, oral metronidazole. Classic scenario. I thought I had yeast and self-treated.When I was diagnosed year later ureaplasma was found and treated with doxicycline, but mypersonal feeling is that it did not clear up. I have had urethral syndrome/"nonspecific urethritis" for years following astring of urinary tract infections in college. An interesting detail in my own story isthat I have had TMJ for about ten years. Well now they're saying that TMJ, rather thanjust being a structural problem or myofascial pain, is actually a reactive arthritiscaused by infection in the jaw. It turns out that over 70% percent of TMJ in women (evernotice how it's mostly young women who have this?) is caused by CHLAMYDIA infection. Ithought this was totally bizarre when I heard it, but more and more this connection isbeing discussed. Now is the TMJ and the uro-genital problems I have (vulvodynia) merecoincidence in an individual prone to pain? I and the alternative neurologist I spoke todon't think so. He told me he has seen this combo MANY TIMES. I've tested negative forchlamydia the three times or so I've been tested, but each time it was not a tissueculture but a cheapo slide test for a bug that can be notoriously hard to detect. So Jennifer, I think you're right--yes, vulvodynia has many causes, but for those of uswith inflammation in the vestibule particularly and urethral symptoms as well, more andmore people are suggesting infectious causes. Another possible point of interest in mysotry: I had campylobacter in my stool (food poisoning) several years ago. I think you're right that the flora and pH are off, and that conventional doctors don'tknow how to read it. And there ARE ways of stabilizing this stuff--but you have to look atthe whole body, endocrine etc.
CommentI have had vulvadynia for about 7 years, but until several months ago had it prettywell under control by taking 5 mg valium at bedtime and using ice packs. In Feb or Marchof 2000 I was told I had a serotonin defeciency and began treatment with effexor. Shortlythereafter I developed a bladder infection (only the 2nd one in my 64 years) which wasfollowed by shingles in the vulva area, which turned into a bacterial infection in theends of the nerves. My doc couldn't find a narcotic pain medicine for the shingles painthat didn't give me very bad stomach pains. Finally he sent me to an OBGym who gave me ademerol capsule which included something to keep my stomach from getting upset. Now, inJuly 2000 we have cleared all the infections, the shingles have cleared up and my vulvatissue looks normal. What I am left with is the vulvadynia (pain on the inside), but much worse that before.Both docs and I think my problem is neuropathic pain resulting from an injury. I alsothink I have nerve damage from the shingles and bacterial infection. The 5 mg of valium at bedtime no longer gives me some pain-free days. The only thingthat works on this intense, burning pain on the inside of the vagina is the narcotic.That's where the rub comes in. Doctors are very leary of prescribing narcotics for chronicpain and I understand—they can get their license pulled for over-subscribingnarcotics. BUT I have read several articles which say patients who take narcotics for paindo not become addicted. I am certainly not addicted—anytime I can do without it I do.But there are the times when it feels like a blow torch inside of me and I cannot functionwith the pain. Has anyone had similar experiences? Do any of you ladies feel your pain may beneuropathic? Dr. Glazer, what is your take on my situation? My heart goes out to all of you that have pain during intercourse, especially you young20 year-olds. I have been blessed in many ways—I didn't get this until my late 50'sand intercourse has never painful. One more thing before I close (and I promise not to be do long-winded from now on).Don't forget the power of prayer and keep in touch with the Ultimate Physician. My faithin Christ, my prayers, the prayers of family and friends has been my best weapon. It givesme a peace that defys understanding and staying calm decreases the pain to a certaindegree. Would love to hear from some of you. email me at mpjordan@alltel.net
CommentIn response to Marcie's entries. Studies have been done that show that NON MALIGNANTPAIN (THE TYPE WE HAVE) CAN BE AND USUALLY IS 100 TIME WORSE THAN MALIGNANT (CANCER TYPE)PAIN. Please contact the ICA (Interstitial Cystitis Assoc.) as vulvodynia and IC overlap.They not only have excellent articles on vulvodynia but also on pain management. NARCOTICTHERAPY DOES NOT MAKE YOU AN ADDICT. IF IT WORKS - USE IT. NO ONE DESERVES TO SUFFER.Contact the ICA: www.ichelp.org for more info. I am a nurse and am now completely disabledby both IC and vs (see my several entries). I sound like a broken record, but in Calif. ITIS AGAINST THE LAW TO DENY PATIENTS OPIATE NARCOTICS!! By law an MD MUST prescribe anopiate if the patient requests it, or if the doctor has "triplicate fear" (thetype of form these narcotics are written on) BY LAW THE DOCTOR MUST SEND THE SUFFERINGPATIENT TO A DOCTOR WHO WILL PRESCRIBE THE NARCOTIC. That is why it is always best to goto a PAIN MANAGEMENT SPECIALIST. They are usually anesthesiologists and besides opiatetherapy, offer a wide variety of alternative pain treatment options. I have so manyallergies to drugs that I have no choice but to be on opiates. At least I can get out ofbed now in the late morning. I take pure Oxycontin (same drug in Percocet without theTylenol added) 20 mg every 4 to 6 hrs. This is supposed to be time released and last forat least 12 hours, but as you can see I am in so much pain I need it more frequently. Ialso take the "quick" acting regular Percocet tablets (5 mg of oxycodone and 325mg of Tylenol) for "breakthrough" pain every 3 to 6 hrs. So Marcie, please donot feel guilty about taking narcotics for pain. That's what they are made for. This is ageneralized statement infused with a little humor but: That's why God made the flower(poppy) for. The following drugs come from the same source: heroin (used for paintreatment in England), methadone, codeine, fentanyl, oxycodone,Dilaudid, Demerol,Morphine. There are a few more, but they are only for IV or IM use. The ones I listed canbe taken in pill form or via a time released patch. Hope this info gives you hope. I toorely on the Ultimate Physician. As the last 3 years of my life have been a living hell andan absolute nightmare my faith has been sorely tested. God's care for me never fails tohumble me. I have received two, what I believe to be absolute miracles, within the lastmonth. Makes me realize I must lay all at his feet, give my burdens to him and let God beGod. Amazing Grace, indeed. Laura
CommentSandra, I have been thinking about you, and I really think you should see adermatologist that specializes in vulva pain. I assume you are seeing your GYN. Many GYN'sespecially OBGYN do not have experience with this. OB's are best at delivering babies. Ithink you had mentioned you have children, and I assume you are consulting with the samedoctor fo this ailment. Don't let rapport with a long standing GYN get in the way. I knowI have made an assumption here, if I am way of base I hope I did not upset you. I don't know where you live. Dr. Betty Bellman in Miami Beach is excellent. She is adermatologist who specializes in vulvodynia. If she is inconvenient maybe you couldcontact the vulvodynia association, the website is www.nva.org. They may have a list ofdoctors.
CommentI'm sorry, but I beg to differ with those of you who say Jesus and God are the way outof this thing. If paternalistic religions hadn't been trying to subdue female sexuality,and sexuality in general, then we could discuss our problems openly and get understanding,sympathy, and yes, maybe even disbillity. The same people who tell you the New Testamentis proof that suffering is good aren't exactly practicing self-flagellation, now are they?They don't even want you to have sex. I for one have had it with a religion that thoughtAIDS was a plague brought on homosexuals by God and makes an arbitraty distinction betweenrhythm and latex.
CommentTo E.Kim (7/30): I can't believe your insensitivity. This web site is here as a supportmechanism for people who are suffering -- it is not here for you to use as a forum to bashother people's personally held religious beliefs. If you don't have anything supportive tosay to these women who are enduring incredible suffering and who are looking for someglimmer of hope, then don't use this sight again.
CommentCan vvd flare up because of stress? I've just had several pain-free months but I'vebeen very stressed lately and it seems to have come back. Though not as badly as before.And I think when I constantly am worrying about it it makes it worse.
CommentI agree that stress makes it worse, but most especially when I am worrying about it.That's were exercise comes in for me. If you haven't tried it, please do! I am not talkingabout lifting weights and all that stuff. I am talking about walking around the neighborhood for 30 minutes or more...I wear adress or loose fitting clothes and walk with a friend. It helps ease your mind of thepain, and then helps (I think) with the pain itself. I have also started swimming once aweek or so. I could barely do a lap when I started, but just getting in the pool and beingable to relax my entire body with the water bouyancy is great. Hope this helps someone.Exercise and getting out of the house, as someone recently mentioned, are great for yourmorale.
CommentI don't believe in any of that religious stuff either. Although, if it helps somepeople I guess we atheists can just choose to ignore those comments. It is hard for me tounderstand how you can ignore that you have this terrible thing in the first place, wherewas God then? Good people have bad things all of the time, yes it is true that some timeswe walk away with personal growth, but I would never say it was better to have suffered.Most of that is just rationalization. I know there is a saying that goes something like "pray to God like everythingcounts on him, and take action like everything counts on you" I hope the religiouspeople stay active in their persuit of feeling better, and don't just sit back and hope adivine power will just take it away.
CommentAre any of you on the depo shot? I have been contiplating using depo as birth control(not that I have sex much with all of this pain) but my biggest concern is that it willmake my pain worse. I can not imagine this getting any worse. I noticed someone made aentry talking about hormone levels being the cause of pain and I honestly think that thisis true for me anyhow, that and stress seems to make it worse. I notice that my painsubsides during my period where for most it increases, this is why I think it contributesto hormones. I am affraid to try new treatments because everything I have tried in thepast has caused my pain to worsen. I do what most do... use "Free" soap, rinsemy clothes 2 times after I wash them, wear cotton underware, lose fitting clothing....with little help (although even a little help goes a long way). I recently had a baby andnoticed that my pain lessened a great deal during my pregnancy although not all the way. Ifound a understanding doctor who didnt know much about vvd but was willing to do acesarean section because I felt that vaginal birth may cause this pain to come back tenfold. Anyhow back to my original question... anyone use Depo as birth control? And Has itaffected your vvd in anyway? This shot lasts for 3 months so I cant just try it and stopit if necessary. Any information you can give me would help. Thanks!
CommentHello all my friends in pain, Wow what a roller coaster life is. Here is what is up with me, for anyone withopinions, ideas, or those of you just beginning your search for answers, a clue to whatcould be in store for YOU. I went to a PT specialist in Philly: Her dx: pudendal neuralgia. She is sending me toPT, and not overly optimistic about result possibility. (No way it could be yeast shesaid) I sent away for Dr. Solomon's oxalate test:Result: decidedly abnormal, suggestion totry the low oxalate diet and supplements with a 70% shot at pain lessening or relief. (Historically people are not helped by antiboitics or andti-fungals they say) Stool testing from the Great Smokies Lab: Result: excessive glabrata yeast in theintestine (vag smear normal, or so the dr says) Recommentdation? anticandida diet (cancelsout the low oxalate diet unless I want to ONLY eat meat and eggs for the rest of my life)plus found excess bacteria in the stool. Tried the estrogen cream treatment, prescribed by my own gyn, (this is from studiesfrom dr. Willems) but compounded by a natural pharmacist (Estrace or for me TRI-EST) for 3months. No proven danger in hight estrogen levels when appleid topically they say. No realchange, but had a horible experience with my period last week, passing numerous largeclots, bleeding very heavily and I historically have very light periods. Oh, and havebreast tenderness and swollenness too, even after my period ended (read : too muchestrogen in system) So what to do? Who to listen to? Who the heck knows. Best of luck to you all, Candace
CommentRe: criticism of religious dialogue on this site -- I am empathetic towards the personthat is offended by all the religious talk. As a nurse, I was taught never to presume thata patient wants to be comforted by religion. Indeed, a nurse was reprimanded AGAIN at workbecause yet another patient complained about her talking about prayer and god. I wouldhope that religious people could have enough respect for people of differing/no religion.Doesn't religion espouse understanding? As a catholic priest once said when trainingnurses in spiritual support, "Conversion is violent " (and mentioning religionat all can feel like an insidious conversion -- it does not have to be blatant). Religionis personal, and should not be discussed for fear of offending unless agreed upon by all.
CommentHi! I'm Marcy, a brand new member of this chat room and a still-learning novice on theinternet. I apologize if I offended anyone when I mentioned my faith in the ultimatephysician. My faith is not in religion per se. My faith is in the personal relationshipthat I have with God as one of his children. No, He doesn't take away my pain. Neither didhe cause my pain. But He does give me strength to bear the pain. I want to say, afterreading some of the entries on this site I'm really not experiencing pain—compared tosome of you. But I do know pain and my heart goes out to all of you. I pray it will not belong before a cure is found for this dreadful disease, but I have been encouraged to knowALL doctors are not ignorant about it and there ARE some doing research on it. Personally,I don't believe surgery is the answer—I'm glad it has helped some, but I've heardmore stories of failure from surgery that success. I urge all to check into possible nervedamage and management of choronic pain. Whether or not you agree with me—I pray foryou all.
Commenti'm not sure why people have gotten so offended by marcie's post and a few followingit...there is a lot in these guestbook's that we don't agree on, but we don't bash it all!some people find comfort in the idea of god, while others don't believe in god at all, butit shouldn't be an "us" versus "them" distinction. (eg. "thereligious people" vs "the rest of us"). we are all in pain, we all havethat in common. how we deal with it is different, and we shouldn't attack each other,particularly when we don't really have an idea of each others true beliefs. personalattacks based on religious stereotypes are really not helpful in this forum. similarly,religious sermonising would not be useful (not that that has gone on...) what is helpfulis understanding and compassion, which is basically what jesus was about in the firstplace.
CommentDoes anyone get major discomfort from driving a car and found any tricks to minimizethe pain? Driving/sitting in a car has always been one of the more painful activities forme with this stupid disease and it's just become worse. I just bought an SUV and I guessthe different sitting position and posture in it brings about even more contact betweenthe seat and the painful areas. It's going to REALLY awkward to go back to the cardealership and explain why I need to return the car! Anyone found any good tricks? (I'vetried sitting on an inflatable donut and propping my butt off the seat with a towel --neither seem to work well enough.)
CommentI implore you, Marcy -- do not pray for me (or at least have enough respect for mybeliefs not tell me if you are going to). Healthcare practitioners and chaplins in theCatholic hospital where I work and volunteer (I've worked for 4 Catholic hospitals, andvolunteer at a Catholic hospital and Catholic Charities) are advised it is againstprotocol to mention religion unless the patient requests a prayer or to be counseled. Wehave had complaints from patients because a nurses assistant refused to stop singingreligious songs while working (some of these patients were devout Christians), andpresently an R.N. is being reprimanded for ending her patient care sessions withstatements like "I'll pray for you". I don't expect people who practice themajority religion to understand (though I'm sure Jesus -- as compassionate and respectfulas he is supposed to be-- would understand). Even a Catholic priest I work with, whosupported me with some problems and I consider a friend, never mentions religion to me(nor do the nuns I work with, or my friends of various religions). I am going to requestall religious statements be removed from this site. Please refer to a Christian site ifyou need religious support. And this is worth mentioning again -- do not be soinconsiderate and narrow-minded as to pray for me when I clearly stated it is offensive!!!I am goin
CommentI HAVE BEEN CURED AND I THINK YOU COULD BE TOO!!!!!!!!!!!!!!!!!!!! I can't believe it, I think I am cured forever. I have good news for you! And yourdoctors will never tell you about this, because there is no profit to them or thepharmaceutical com-anies. There is a doctor at Vanderbilt University who works at their hospital dealing withchronic pain patients. He noticed that magnets helped people dealing with pain and decidedto research it. (His name is Dr. Holcomb, bless his heart). He figured out why magnetshelp people who are in pain and designed some magnets based on his studies. (I believe hewas the first and maybe only doctor who studied the effects of theraputic magnets onpain). What happens, in very abbreviated and untechnical lingo, is our nerves when they aretransmitting pain signals to our brains, use "gates" (ion gates I think) thatopen up to transmit pain signals. The magnets simply close these gates and the pain goesaway in most cases. In chronic pain cases, where the nerves "gates" are stuck inthe open position (which is my case, my vulva was injured in an accident when I was 10,fifteen years ago), the magnets can relieve this pain too. If you want to investigate ityourself, go to www.magnabloc.com or www. holcombhealthcare.com Let me tell you my story. It is posted somewhere back there in the previous guestbooks,but I'll summarize. When I was ten, like I said, the skin of my vulva was injured.Starting the very next day, severe itching started, like a million little misquito bitesall on top of eachother. The itching has been there ever since. Nobody, not a doctor oranyone else took me seriously until I was eighteen. I got a diagnosis at 22, and am apatient at U of M at their center for vulvar diseases. The only relief I could get wasfrom 'caine creams, but lately those have lost their effectiveness. A year ago, I bought a set of these magnets to use on my backaches, they worked great!Within a minute after placing them on my back, the backaches would go away. I tried themon my vulva with no success last year. About a month ago, I read the instructions a littlemore carefully and discovered that I had placed them wrong when I tried last year, so Itried again, and within 30 seconds of wearing the magnets correctly, the itching was gone.I experienced about 75% relief the first day, 85% relief the second day, and 100% reliefby the third day. Please understand, for the last fifteen years, I have not gone fifteenminutes without debilitating painful itching without the help of strong 'caine ointments.I have been free of painful itching for 3 weeks now, with the exception of a few days boutof razor burn after shaving my bikini line. But that doesn't count, that was not from thenerve damage I had received. Well, theoretically, if the magnets work once, they willalways work. And, ladies after the nerves settle down, and they aren't so freaked outanymore, sometimes you don't need the magnets anymore, and today, I am magnet and painfree!!!! This is one of the happiest days of my life!!! Even if I try to get the itchingto come back, it doesn't (sitting in certain positions, walking, etc...) so that's mylittle story. I can't tell you how wonderful this is. My husband and I are intimate anytime we wantto be, and neither of us are afraid of hurting me anymore. I go for long walks, exerciseagain, next year, maybe I'll get the courage up to go for a bike ride!!!! Compare these magnets to what else you have tried. These only cost about $150. Theywill last longer than you. You can try them for 3 months, and if they don't work, you canget a refund. What if you could return the empty tubes of all those useless ointments,creams, potions and pills? How many thousands of dollars could you stuff in your pocketwith that? Your doctors and pharmacies would not make a dime, so they don't bring it up. I also want to say, I decided to go public about this and tell anyone and everyone whenthe timing is appropriate of course even my girlfriends' husbands know now, and guess whathappened, I've found another woman in my area with vvd that I graduated with from highschool, and she knows someone else with vvd. And, I found out some other people I know aresuffering with chronic pain in other areas, and I'm going to try to help them with thesemagnets. We all need to get over the "emberassment" of talking about our vulvasand tell everyone, or people will never know about us. The media isn't going to give usattention, let's give ourselves attention and let everyone know. I am a shy person, and ittook a lot of prayer and preparation to get the courage to talk about this even with myclose girlfriends, and now everybody's finding out. Well, it's time to catch up on reading the posts I've been missing since my computercrashed. I hope I get them all read before my baby wakes up from his nap. Best wishes ladies, if you want more information on the magnets or finding somewhere inyour area you can get them, let me know by e'mailing me at dustyandreb@yahoo.com or visitthe websites. I'll check my yahoo address every once in a while when I can get to acomputer. ps To everyone I was corresponding with, my computer crashed a couple weeks ago, sorry.Lauren, could you send the survey to my yahoo address? It's dustyandreb@yahoo.com Thanks.
Commentalli, would you please read your most recent post and try to decide who is closeminded? You want Dr. Glazer to remove all religious posts, and you don't see that as closeminded? What the hell is it then? I'm not taking sides on christian or athiest or buddhistor hundu or whatever, but I am sick of "politically correct" people who are sodamn scared of being offended or offending. They wave their baners high for accepting allpeople and ideas, but get all bent out of shape when someone brings up religion, becausethat's close minded. (do you see the irony, or is your open-mindedness getting in theway?) Our country was founded on freedom of speech, remember?
CommentRebekah: Where do you place the magnets? It seems strange that magnets could cureitching or vulvar pain of any sort.  |