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CommentHi Lois: I had HPV also and had them removed by laser, but my burning all started BEFORE I had the warts removed. I'm also in menopause now and that doesn't seem to help matters either. I hope you find the help you need for pain relief soon.
CommentWelcome all guests to the eleventh vulvodynia guestbook. Thank you all for your continued interest and support of the vulvodynia.com website Howard I. Glazer Ph.D. vulvodynia.com site owner
CommentLois, My symptoms started after I was treated with an acid for supposed veneral warts. I was never the same after that treatment. I unveiled my history a few messages back if you are interested, but I had left off what I thought the cause was. Thought you might be interested.
CommentI have had vulvadynia for 3 years. I have been taking Effexor and following the Low Oxalate Diet, but recently, I discovered Prelief on this Guestbook and tried it. It has helped a great deal!!! I even tried having foods that I know cause burning and so far, I have not had any burning. I take two caplets before meals and I have been feeling very good. It's worth a try. Prelief can be purchased at most drug stores. It's by the same company that makes Beano. It's the only supplement that has helped me in 3 years. Maybe it will help another sufferer.
CommentI have had vulvadynia for 3 years. I have been taking Effexor and following the Low Oxalate Diet, but recently, I discovered Prelief on this Guestbook and tried it. It has helped a great deal!!! I even tried having foods that I know cause burning and so far, I have not had any burning. I take two caplets before meals and I have been feeling very good. It's worth a try. Prelief can be purchased at most drug stores. It's by the same company that makes Beano. It's the only supplement that has helped me in 3 years. Maybe it will help another sufferer.
CommentIn May 1999 I was diagnosed with Vulvar Vestibulitis. I am grateful that there is information on the Web. This is the only place I've been able to find extensive information. Thank you.
CommentThe website for Prelief is www.prelief.com It includes letters by IC sufferers who say it helps, I tried it for the vulvar burning and it has helped me.
CommentThis message is to anyone that is considering surgery, whether it be laser, vestibulectomy, whatever! Please, please do your research before you make the decision to have surgery. You need to really think it through, and be aware of all the ramifications that surgery may bring. Research the doctors and medical facilities that will be involved, and get plenty of feedback from previous patients, if possible. I have heard plenty of accounts of women that say that they are healed from vv as a result of surgery. However, there are also many women that are either developing vv as a result of surgeries, or are having surgeries that are only making the vv worse!!! I wish I had done my homework before I decided to have laser surgery in 1993. At the time, I had not yet been diagnosed with vulvodynia, although I was constantly having problems with what they thought was yeast, etc (although nothing would show up on the slide). I was, however, diagnosed with HPV (warts) and was told the best way to rid of the precancerous cells was with C02 laser surgery. I thought that this GYN doctor was an expert in the field, and I even consulted with the medical director of the medical facility to get his opinion. Unfortunately, I went through with the surgery, and it ended up being "botched." The doctor ended up burning off more tissue than he needed to, and as a result, I have pinkish-red strawberry spots of tissue that have never healed. This particular doctor could not figure out why it was not healing, and passed it off as emotional stress. When I finally was diagnosed with vv in late 1993 (by an excellent specialty GYN at UC Santa Barbara), it was thought that the laser procedure that was done 6 months earlier may not have been necessary. Other procedures could have been used. In fact, much like Lois' entry above, I too would have to agree that the laser was THE BIGGEST CONTRIBUTING FACTOR TO THE WORSENING OF MY VULVODYNIA. It is hard to say whether I had vv before the surgery or not, but the laser is what really set the vv symptoms off!!!!!! In fact, I had such bad symptoms while I was at UCSB (raw, burning vulva, torn perineum, "paper cuts "in various areas, stabbing pains, etc) that my doctor recommended two other possible surgeries, vestibulectomy and flash pump dye laser. It has been nearly 6 years since that recommendation, and I am still in debate as to whether I want to go through with another surgery. Luckily my symptoms are somewhat mild these days. However, it is my personal belief that the laser surgery is what set my vv off in the first place, and I do not think that I will ever be able to put myself in that kind of a vulnerable position again. It breaks my heart to see us women struggle on this guestbook everyday, trying to make these life-altering decisions while there is not enough research out there yet to substantiate many claims!!! There has to be an answer other than surgery!!!! FYI: I will be emailing Oprah Winfrey soon...if enough of us yell, maybe someone will finally listen!!! Take care...my heart goes out to all of you!!!!!
CommentLois, I wanted to tell you that my vulvodynia started with an acid treatment for veneral warts. I was never the same after that treatment. I put my history out here about a week ago, but I didn't put in the cause. I am not cured yet. Hope this helps.
CommentI have been diagnoised with vestibilitus for one month,I have been suffering from this for the last year. It is nice to know I am not going crazey , there are others just like me.
CommentWhere is the 10th guestbook?
CommentFound the 10th guestbook! Yeah! I was wondering if anyone else can tell almost immediately that your VV is going to be much worse. I have some good days and then all of a sudden within a few minutes, I can feel it coming on and within a few hrs, I am back where I started. It seems so strange. Good luck to all of you out there!
CommentTo Lois (above). Don't despair. I had similar problems going from Dr to Dr and not being believed. What I did was print out all the information I could find from the Net, as well as a couple of pages from this bulletin board, and took it to my Dr and made him read it. He admitted that he had never had a patient with vulvodynia before and seemed very sceptical about it all until he'd read all the info I gave him, then he changed his tune! Ask your Dr to refer you to someone more specialised (he can make enquiries for you, or you can phone around to hospitals, clinics, etc. yourself) - you will find someone who understands. Take your info from here with you. Don't give up. I am the same age as you are, and yes, a fulfilling sex life should NOT be over for us at this age! Good luck.
CommentTo all- I am 21. I was diagnosed a month ago. I have dysesthic vulvodynia. I was told that this is the type that most women in premenopause or postmenopause get. I have had this for 1 1/2 years. In that time I have found a few things that sometimes help with pain relief. At first, I was using a lubricant like KY jelly. I now am using Vagisil. It is like a natural lubricant. It has aloe in it. There is also Astroglide and it has the same stuff in it. In my shower I sometimes use Summer's Eve body wash. I use Summer's Eve feminine wash everyday. Sometimes after I use the restroom. I use the Summer's Eve feminine wipes. I do not drink pepsi or anything like that. I habe noticed that gives me burning. I usually drink milk, tea or water only. Please don't give up I hope. I hope someone finds a cure or some relief for us soon. Like Most all of you I would like to make love to my soon to be husband. We just have to speak. And be heard by dr's. I tried to tell my dr. I had IC. She would not listen to what I had to say. So make sure they listen to you. It seems to be like we all are trying to help ourselves.
CommentI'm surprise with the number of people that have my same dissorder and pain. I'm from Argentine and during the last two years I had visited about six doctors and anyone could give me a diagnostic. Recently on December I found a doctor (and professor at the University) that diagnostic the Vulvodynia. Now I find that my situacion is worst that I imagine, but I know what is the problem. Thank you for the information and I think it will be useful a page or a site in Spanish with the information. Marina.
CommentEnjoyed your site...!. The mine is the best. www.altogallego.com
CommentI have been suffering from Vulvadynia since July of 1999; One month after my 28th birthday I began to suffer from it and was diagnosed in September of 1999. What I would like to know is what reasearch is being conducted to actually try and find out what causes this problem. While it is great that everyone writes to these guestbooks, and tries to help each other with what knowledge they have come by through their own trials and errors, I want to know what causes this problem. It seems that no one knows and I am not satisfied with that. I am about to start my own website where women can come to read information on who to lobby and how to do it. It seems to me that is lacking severely!!!!! Why are there so many hundreds of thousands of women who have this and yet no one is trying to find the source of the problem. All of these so called treatments are worthless if they aren't related to what actually causes this "disease". Isn't there anyone else out there who is tired of living they way they are forced to live. I am tired of being a guinea pig to all the doctors theories??? If you are intersted in being more involved in lobbying the research companies and pharmacuetical companies as well as the NIH and Congress to demand that they start funding for research for a cause and cure for Vulvadynia please feel free to email me. AOL has a silly little rule that no body parts can be used in the screen name you choose. Hence the funny spelling in the email address I have posted. Please email me at vulvodyniapain@aol.com. I will answer every email sent.-Lauren
CommentHello again ladies!! I posted an entry in the last guestbook a while back, but I wanted to write again and share my story of what I've been thru in the last few years. I have both endometriosis and vulvodynia. Living with the endometriosis In Nov of 1996 (at the age of 25) I was diagnosed PCOS, and about 2 weeks later I started having very intense pelvic pain that I thought was due to a pulled muscle. The pain continued for several months and after having gone to my family dr they thought it was ovarian cysts. As this pain continued to get worse, and to the point that I couldn't sit or stand without intense pain. The way to describe this pain is that it was ten times worse than a normal menstrual cramp. I was laid up in bed for several months while trying to get the answer to this pain. This pain would make me feel like plastic was being pulled away from my skin whenever I would get up from a chair after sitting too long. The endocrinologist that treated my ovarian cysts suggested that I should see a gyn but for several months after he made that recommendation I didn't do it b/c I was of the opinion that I was too young to go. In the Spring of 1997 I went to a GI dr who wanted to run tests to make sure that it wasn't GI related but I canceled the tests b/c the pain that I was having was too low for where they were saying it was. By June of that year I went to my second gynecologist. She and a Reproductive Endocrinologist took me in for my first laparoscopy, and I was diagnosed with endo on Aug 8, 1997. Five weeks after that surgery the RE put me on continuous bcp. From that time on I had a hard time trying to find the right pill to keep the breakthrough bleeding down. I went almost 2 years without any pain from the endo, and when it started it affected my school attendance at the college that I was attending to become a medical secretary. It took some time to make the teacher understand what was going on, and in June of 1999 I had my second laparoscopy under the care of a different dr (a regular ob) who is so caring, and understanding. It has been almost 9 months since that second laparoscopy, and I'm pain free from the endo, and hoping that I can go along time without the pain. Life with the vulvodynia In March of 1998 when I went in for my physical with the last gyn that I had I told him that I hurt at the opening of my vagina, but after I told him about it he just told me that I probably had a tender cervix, but I knew that something was wrong with that. Then when my second lap to check for the endo was scheduled for June of 1999 I started to notice something quite different. I had some very intense pain my vulvar area the night before that second lap and was confused as to what was going on, but I knew that when I tried to insert the tip of the douche bottle that I was required to use in preparation for the surgery it hurt a bunch. I did manage to get the tip inside of me but it took a great deal of effort. Two weeks after that lap I let my ob know that this pain was happening, and I thought it was b/c of the catheter that I had during surgery. Well from that point on I started going thru several rounds of infections. The cycle of infections since Jul of 1999 has been yeast infection, UTI (urinary tract infection), Bacterial Vaginosis, and Vestibulitis (Diagnosed in Sept). During that month of Sept was when I was diagnosed with vulvodynia. The thing that frustrates me the most about these infections whenever I get them is I have some very intense pain, and in recent months I would always feel it in my groin area. I did have a break from the infections for about a month before it started all over again in Nov, and has continued in to this year that included two kinds of bacterium that didn't go away until the second course of antibiotics that I completed back in Feb of this year. I was really hoping that the year 2000 would be one where I didn't have to spend time in the dr's office but starting in January I've been back to my ob due to the vulvodynia. I've been in constant pain since from the vulvodynia for almost 3 months straight starting in Dec of 1999. Now in March of 2000 I have no infections but tons of vulvar pain, and the reason for that is b/c the level of my pain has gone to a new level and I don't have an infection at this time. My hope is that there will be a cure for both of these very painful, disabling, and frustrating conditions. In the mean time the only thing that we can hope for is ways to treat the conditions as far as suppression and relief from pain. I have had both endo and vulvodynia for 2 years, but in the case of the vulvodynia it took exactly 2 years to be told what I had. My goal from now until there is a much needed cure for both conditions is to educate as many people in the public, and to offer as much support as I can to all ladies who suffer from one or both of these conditions at the same time as I do. I try my best to cope with each of these conditions, but sometimes the things that come up while I try to cope doesn't always make it easy for me but I try to take it one day at a time. Taking it one day at a time will always be a challenge for me, but in the end I know that I will succeed, and to those of you who read this story please know that you are never alone. Please feel free to e-mail me directly if you need support, or have more questions for me. I also want to let you know that I had sent a note back to the owners of a site called obgyn.net (they focus on women's health providing information for both doctors and patients, and medical industry such as the pharmaceutical companies) to ask them to please do something about vulvodynia. I got a note back from the editor of the site yesterday saying that they would be doing something on vulvodynia, and would I mind telling my story about what it's like to live with both of these conditions. The story that I sent in to them is the one that I just posted here. I wanted to give you all a chance to read it before it got posted next month. As soon as it is posted along with the other info about vulvodynia I will write again to give you the link. In the mean time if you would like to check out what this site for women's health has to offer when it comes to other aspects of women's health just go to: http://www.obgyn.net/women/women.htm As far as treating my vulvodynia my dr and I decided on Tues that it would be ok for me to try the Premarin and steroid creams for a spell to see if it helps my symptoms. Thankfully this time around I don't have any infections. I'm tired of them, and going thru two rounds of infections was real rough on me. I will let you all know how I do with this regimen. I really want for it to work b/c this thing has controlled my life very tightly for more than 6 months, and what is worse is that now I know that the vulvar surgery I had in 1997 to correct a problem with one side of my vulva has caused this thing that I will have to always live with until that cure comes. I wish everyone a pain free rest of the week. Also please know that anyone is free to e-mail me privately at any time. I am always available for those who just need to talk. Please take care everyone.
CommentHi, Ladies--This is my second entry in the guestbook since writing about a year and a half ago...I used to live in the Austin, TX area and want to share some information with those of you who live there and are needing help/relief from your vulvodynia symptoms. To give you a little background, I have had vestibulitis/vulvodynia problems since I was 19 (I am 26 now). I think the problems began with Monistat 7, but I also think that abnormal vaginal muscles contributed a lot. I had a vulvectomy (not laser) when I was 19 and that helped. When I was 24, I had a reoccurence of vulvodynia--it was awful and I can empathize with everyone who sits in constant pain all day long and has problems with sexual intercourse. I was lucky enough to get an e-mail from someone who read about me on this Web site, so now I want to help you. It was recommended that I go see Stephanie Hahn, a physical therapist in Austin who has a support group and does specific work with vulvodynia patients. I had my regular gyno refer me to her and my insurance covered the visits--which was very lucky. When I began, my vaginal mucles were very tight and painful to touch, but with Stephanie's help over the course of a few months, they began to relax and the pain to subside. I think that people who have very tight leg/back/thigh muscles might be prone to vulvodynia and may not realize that the burnign is caused by these tight muscles. Long story short, it worked wonders. I got a biofeedback machine that I used religiously and still use occasionally. I have been able to have pain-free intercourse again and am very grateful to Stephanie for her help. I highly recommend talking to her about your options--her staff members are also very nice in dealing with insurance issues. You can contact her at 512-458-1183--maybe she can point you in the right direction if you don't live in the Austin area. I pray every day that my problems do not come back, but with biofeedback I really think that there is a way to control vulvodynia. Good luck to all of you women out there--don't give up on getting better!
CommentTo Melissa in WA State -- where are you located? Email me directly with your location and the kind of specialist you're looking for. I've seen all sorts of people for this and might have some names to give you.
CommentMy vulvodynia began when I experiencing great stress in my life. During that time I noticed vulvar burning which I feel was purely psychological in origin. Has anyone else had such burning, that they feel is directly linked to stress? And if so, besides retiring from life which itself is stressful, what have they done to eliminate the burning?
CommentI too am very glad to see that other women are experiencing the same thing I am. I am 24 and have had volvodynia pain for about 3 years. I can't really say what I think might have started mine, but I sure wish they would find a cure. I have some good days, but more bad days. I recently got married in Feb. 1999 and I am very thankful that my husband is so understanding. I really haven't found anything that makes a difference with me, it seems that the days I do feel good, I can't link it to anything particular. I have an appointment to see Dr. Glazer in April. HAS ANYONE ELSE BEEN TO SEE HIM AND RECEIVED HIS TREATMENT? If so, please e-mail me I would really like to know your outcome. I live in Tennessee and would hate to drive all the way to New York for nothing. I pray for everyone who suffers from this horrible disease. I wish everyone the best in finding something that will work for them.
CommentI too am very glad to see that other women are experiencing the same thing I am. I am 24 and have had volvodynia pain for about 3 years. I can't really say what I think might have started mine, but I sure wish they would find a cure. I have some good days, but more bad days. I recently got married in Feb. 1999 and I am very thankful that my husband is so understanding. I really haven't found anything that makes a difference with me, it seems that the days I do feel good, I can't link it to anything particular. I have an appointment to see Dr. Glazer in April. HAS ANYONE ELSE BEEN TO SEE HIM AND RECEIVED HIS TREATMENT? If so, please e-mail me I would really like to know your outcome. I live in Tennessee and would hate to drive all the way to New York for nothing. I pray for everyone who suffers from this horrible disease. I wish everyone the best in finding something that will work for them.
CommentI have written in before. I have had vulvadynia for about 1 1/2 years. I strongly believe that it is linked to stress. When it started I was 6 months away from my wedding, starting a new job, buying a house and stressed about leaving my Mom alone in her house. It was just me and her since I was 14. She is older (72) I am 28. My father passed away when I was 14. My sister and 2 brothers are all in their 40's. They were all married and moved out ages ago. I do not handle stress well at all. In fact, when I was graduating college at age 23 I got the shingles from being so stressed about tests etc. I have found that amtriptyline 25mg a day has helped me a great deal. I also avoid acidy foods especially tomatoes. I also find that shampoo is irritating. I use J&J baby shampoo. Glycerin soap, but only water in that area. Northern toilet paper. I have found that Eckerd Drug brand zinc oxide helps a great deal. A very thin amount every day. Only wear cotton underwear and pants. I have stopped using tampons. I used to only use tampons. I also stopped having relations with my husband, we usually used latex condoms. I am thinking of trying lambskin. I tried birth control pills, but I feel it made the burning much worse and my mood was awful. Latex can cause allergies. I actually met a woman where I work who had this same problem for a year and a half. She said it went away. She swears it was from stress. She was going through a divorce at the time. Her doctor gave her premarin cream. I have not tried it yet, but she said it helped. I feel better knowing someone that had this and it went away, so I wanted everyone to know that there is hope.
CommentI HAVE HAD THIS HORRIBLE CONDITION FOR FOUR YEARS WITH NO RELIEF.IT IS NICE TO FIND SOME INFO ON IT FINALLY. I HOST A CHAT ON AOL ON WED AND SUND. FROM 7-9 EASTERN TIME PM. ANYONE IS WELCOME TO COME, IT IS AOL PRIVATE CHAT, TITLED VULCHAT. HOPE TO SEE SOME NEW FACES
CommentI don't know if this is what I have or not. I was looking on the net for vaginal pain and I keep coming to this condition. I have pain in my vagina, whether I'm having sex or not. I also get very, very, very itch right after my period for days! It drives me insane! Sometimes the itchiness really hurts as well. I was diagnosed with HPV in the fall. I had a biopsy and then she (gyno) had to freeze my cervix to remove the dysplasia from my cervix. I also have recurrent urinary tract infections and yeast infections. I don't think I'm as severe as some of the women who posted on here, but if someone can please tell me if this is what it sounds like. I don't want to go to my doctor and say this is what I think I have and not have it! She just rushes you in and out as it is, so I'd like to be sure of my facts before I see her. Thanks
CommentLISA NOTE THERE IS ALSO A YAHOO CLUBS SITE FOR VULVODYNIA (CLUBS.YAHOO.COM/CLUBS/VULVODYNIA) WHICH ALSO HAS A CHAT ROOM AND YOU CAN POST THERE TOO. HOPE TO SEE YOU THERE SOMETIME!
CommentHI. I'm not too sure if this is what I have or not. I've been getting pain for a while now and I've looked up vaginal pain on the net and this is what keeps coming up for me. I've had HPV, one wart, which she scraped off. I've had the colopscopy, the biopsy, and the freezing of the cervix. I get very, very, very painful itchiness after my period every month! Sex does hurt, I'll be in pain for a couple of days after wards, which is very uncomfortable! If this sounds like any symptoms can someone please tell me? I want to go to my family doc, but I want to have the facts straight before I go to her. I sometimes feel like she thinks I'm wasting her time or something!
CommentI just had a second visit with a "specialist" with regards to my previous dianosis of Vulvar Vistibulitis. After an exam, she prescribed a cream "cromolyn 2% in a glaxal base". It's the cream form of the medication that asthma patients take to reduce the inflamation in their lungs. Has anyone ever tried this medication?
CommentHi Everyone, GOOD NEWS I NO LONGER HURT! After years of suffering with burning, stinging, painful sex, irritated vaginal and anal area, sensitivity, etc. I've found something that has helped/saved me! I'had been using premarin vaginal cream, premarin tablets, anti-depressants, pain medication, anti-inflammatories for Fibromyalgia. As you know, vulvodynia is only one of the painful side effects. My symptoms were getting worse, two GYN's could/would not help. One female gyn actually said she didn't want to talk about it! In desperation, I spoke to my pharmacist; she suggested ESTRATEST H.S. which is a hormone, but also contains tostesterone. The dose I'm taking is supposedly not high. My pharmacist was very encouraging and said there was no reason I should be suffering. I saw my G.P., a wonderful, very open doctor. He said, yes, estratest H.S. would help my labido (I had fear of pain). Well, this not only helped but has actually healed me! It takes about 2-3 weeks to kick in. Of course I've had to give up all dairy products. I've been able to cut my medications in half. For the first time in many years I no longer hurt after having sex with my husband! I enjoy it! He loves it! It's a whole new experience for me! I hope this helps other women that are suffering - I've had this condition off and on since I was in my 20's and am now 53. I had breast cancer 7 years ago and skin cancer two years ago in the area between the vagina and anus; I'm convinced the second cancer was due to the thinning of the skin and because of all the irritations I've suffered throughout the years. I'm still going in for checkups every six months. I'm not afraid of the hormones. Good luck to all of you.
CommentHow do you know if you have it? I have endometriosis,irregular bowel syndrome,and lots of yeast infections with lots of pain so what does that mean?
CommentAlthough I only developed vv about 1 1/2 ago, I had been diagnosed with fibromyalgia two years previously. However the pain in my arms/wrists etc. from the fibro seemed like nothing compared to the severe vular pain and burning. Within two months of being diagnosed I began taking guaifensin. It took another month to find my proper dosage and I cycled fairly hard for another two months with the vv and off and on for much of the summer. But for the last 6 months I have been largely pain free and when I do cycle it usu. lasts for only a few days and it is VERY slight compared to the pain I was first experiencing. For anyone who thinks their vv is related to fibromyalgia I would strongly recommend trying guai. I did not recover instantly, it has been a very slow process and I am still cycling, but I feel like I have my life back-- something I did not have a year ago.
CommentI have just finished drafting a letter to a doctor who said it was all in my head. I don't think I can send it, but I thought you'd all enjoy it. If anyone thinks I should mail it, please let me know. I think I'd have to take out the "fuck you," although that part is my favorite. Dear Dr. C., For five years I was your patient, and for five years I complained of pain during every pelvic exam. You would have to coax me to towards the stirrups and plead with me to open my legs just so you could perform the exam. When I finally asked you about it you prescribed estrogen cream, and two months later you charged me $100 to tell me that you had known all along that I had vulvar vestibulitis and that the condition was caused by stress and not treatable. Let me now explain to you why I will not be visiting your office anymore. First of all, if you had been up to date in your reading, you would know that the as early as 1993 the American Journal of Obstetrics and Gynecology published an article suggesting the pain on contact seen in vestibulitis was often caused by myofascia of the pevic floor muscles. The Journal of Reproductive Medicine published an article in 1995 documenting the success of biofeedback therapy on the pelvic floor; this approach has been shown to reduce the pain caused by vestibulitis by over 80%. Shall I continue? Last July I went to see Gae Rodke, a gynecologist affiliated with Columbia Presbyterian who has published articles on the treatment of vulvar vestibulitis. The first thing she did was to take a culture to see if I had a vaginal infection. I was so surprised by what she told me that I had to look at the slide for myself. There were no yeast buds; I was overrun with bacteria from the acidophilus capsules I’d been taking for years to rid myself of the chronic yeast you had been supposedly diagnosing on sight. She prescribed a treatment exactly the opposite of the treatment for yeast (antibiotic, no acidophilus capsules and less yogurt, baking soda douche) and I immediately found some relief Dr. Rodke immediately referred me to Dr. Howard Glazer, a pelvic floor specialist who is affiliated with Cornell Medical Center. Dr. Glazer used surface electromyography to assess the contractile strength and resting tension of my pelvic muscles and found that they were drastically abnormal. In addition my vulvar area was full of cuts that were too small to see. Dr. Glazer treated me according to the protocol he and Dr. Rodke published in the 1995 article on treatment of vulvodynia which I mentioned above. After several months I have been able to have sex without crying out in pain. No doctor knows everything, and if you had just told me you weren’t sure what we should do and agreed that it was important to help me I would have been happy. Instead, I told you that I had NEVER experienced sexual intercourse without pain and I was desperate to feel normal and begged you for help and you laughed and said I should relax and the pain would disappear along with the stress. I was suffering so badly that even having you touch the Bartholin’s glands with a Q-tip sent me screaming. Why didn’t you listen? Was I not important enough to you or were you just so unsure what to say that you turned it into a joke? Maybe you just really have not picked up a journal in the last decade or you skip the articles that don’t involve people who can sue you. Maybe you just hated me. I’m not asking for answers, just that you never ever turn someone away with chronic vulval pain by telling her it’s stress or imaginary. When you became an OB/GYN you made a commitment to women and the care of women. You let me down considerably, you made me feel like a freak, and to top it all off you charged me ridiculous Park Avenue prices for substandard care. Please learn from my experience and take every patient seriously and treat her with the care you would give someone who was personally important to you. Knowing you, I am sure you are reading this and laughing and thinking I am exaggerating or that I don’t know nearly as much as you because you have been through medical school. If that is the case I have nothing to say except go fuck yourself. Maybe if you cause yourself pain you’ll take the rest of us seriously.
CommentTO DK: I SAY SEND THE LETTER. THAT BASTARD DR. DESERVES EVERY WORD OF WHAT YOU HAVE SAID. I CAN'T EVEN COUNT HOW MANY INCOMPETENT DRS. TOLD ME THAT THE VULVAR PAIN I WAS EXPERIENCING WAS ALL IN MY HEAD!!!!!!!!!!
CommentTo DK: I say send the letter, it will make you feel better. I don't think that the doctor will ever see it. He probably has someone review his/her mail before he/she reads it, so it will be stopped there. I sent letters to all my previous doctors, not as strong as yours, because I wanted to make sure that they knew what the diagnosis was. This was partially for me, but also for their other patients. I never received any feedback from them that they read it, but it did make me feel better.
CommentTo DK, I agree with the others. Send the letter. Even if the letter never reaches the doctor, you just never know what may happen as a result of your sending it!!! Maybe someone will learn something new or discover that they know someone with the same symptoms!!! You just never know...and I believe, as sufferers, it is our responsibility to educate as many people as possible about this condition!!!! GO FOR IT!!! Also, have you considered emailing Oprah Winfrey? Many women that post to this sight have sent her email requesting that vulvodynia be considered for a show topic!!!
CommentDk, Do send your letter when I read it that reminded me of all the incompentent GP's and Gyns I've seen through the past year not one of them has been able to diagnose my vulvar pain. One of them said it was a syndrome and I had to live with it! I live in the UK and I don't know how the doctors are in America but here they are pretty bad. When I carried on being in pain after having been treated with yeast infection, they gave different treatements and creams, antibiotics, yeast infection treatments, clotrymazole, steroids that made things worse I could not even wear underwears because I was in so much pain. The last gyn I saw gave me oestrogen cream that is helping me a great deal though I still can't wear jeans, pants, tights and I cannot have intercourse with my boyfriend. Though I must say that my pain is not that bad compared to all the stories I read on this site. I admire you all for being so brave!
CommentDk, Do send your letter when I read it that reminded me of all the incompentent GP's and Gyns I've seen through the past year not one of them has been able to diagnose my vulvar pain. One of them said it was a syndrome and I had to live with it! I live in the UK and I don't know how the doctors are in America but here they are pretty bad. When I carried on being in pain after having been treated with yeast infection, they gave different treatements and creams, antibiotics, yeast infection treatments, clotrymazole, steroids that made things worse I could not even wear underwears because I was in so much pain. The last gyn I saw gave me oestrogen cream that is helping me a great deal though I still can't wear jeans, pants, tights and I cannot have intercourse with my boyfriend. Though I must say that my pain is not that bad compared to all the stories I read on this site. I admire you all for being so brave!
CommentI was diagnosed with vulvar vestibulitis 1 year ago. My doctor has sent me to a urogyn specialist. This new doc has prescribed clobetasol, a corticosteroid used for lichen sclerosis. I wonder if anybody elses doc has prescribe this for them or any other steroid. So far the med has not worked at all and I've actually gotten worse. Please tell me if steroid therapy helps or hurts this situation and your experiences with it. The doctor thought this was going to be the miracle cure for me and so far it has been a total flop.
CommentOk Ladies you aren't going to believe this one. I had an email exchange with a reporter yesterday and today. She is from WebMD. She tells me that the NIH was offered funding for research for Vulvadynia and turned it down. Flat out said NO, we only want to do research on life threatening diseases. I don't think I need to express my thoughts on this one. Please send me email if you are interested in a mail campaign to bombard the NIH with personal letters telling them that they have no right to turn down funding, that they have no right to pit one medical problem against another, that they have no right to turn down money when we suffer so greatly on a daily basis. As well I am attaching a link that will take you to the page where you can send email to a producer at Oprah's TV show. I sent an email today. I told them about the NIH refusing to conduct research and turning away funding that they were offered. If they get enough email from us (at least 1000 emails) within a weeks time, they will have to take notice and will be interested in running a show on this topic. Please send an email to them. You don't have to give your full name. You can choose to leave only an email address to be reached at. But I ask that you are bold and are willing to talk to someone if they want to call you. If they decide to run a show on Vulvadynia they will change your name on air if you decide to be interviewed on camera, and they can block your face and change your voice. But ladies, this is nothing to be ashamed of. The media of Oprah's calliber is very respected. You need not feel worried that your name or phone number or email address will be used without your persmission. Please email me if you have decided to send an email to Oprah, as well as if you would like to help with the mail campaign to the NIH. Let them hear our voices!!!!!!!! Silent no more! http://oprah.com/email/reach/email_reach_askstaff.html Lauren
CommentTo DK, It's a great letter. Send it as is. Don't take the "fuck you" out. He most likely won't read it, but it will make you feel better, it will make me feel better, and may make most of us feel better. I'm currently doing Dr. G's biofeedback. Had my first follow-up visit this week and feel encouraged that I'm doing well with it. Don't know if it will work, though. Could sure use moral support with this horrible disorder. If there is anyone who lives or works in the NYC area and would like to meet for coffee, please e-mail me. You'd never know to look at me what I suffer from. I'm sure same is true for all of us. Who would guess??? So long for now, Love, Abbie
CommentHi All, I have left a message on this site before. I wanted to share with everyone again, a way to be PAIN FREE!!!!!!!! OXYCONTIN. This pain reliever has been great. No severe side effects, No strings. It is a twice a day little pill to end all the horror you suffer. I have had this pain for two years. Since I take the Oxycontin life is great!!! My sex life is back, my freedom is here. I wear what I want, wash with what I want. No ointments, no diets, nothing!!! I sleep great, wake up in the morning refreshed and excited about the day. I urge anyone out there living with Vulvodynia to try it. Try to remember what life was like before you got this horrorible affliction. I know again what life is like with NO PAIN!!!! It's wonderful. I feel like a woman again, started showing my husband how fun I can be again. We shouldn't have to hurt all day and night.
CommentTo Elizabeth: I tried the ointment you are using and it relieved the burning for a few days and then I hurt more. The vulvar pain specialist I went to said that steriod cream THINS the vulvar skin, but that Estrace cream thickens it. Ask the specialist about estrogen cream instead. It's done wonders for me. I hope you find some pain relief. Sue
CommentShannon, What is that product you're talking about and where do you get it? Is it over the counter or by Rx? Thanks. Sue
CommentHi everybody: I received the Natl.V.Assoc newsletter yesterday and there is notice that there will be a special on CBS on Body Humas: love sex and the miracle of birth and of the show segments features an NVA member who suffered from severe vulvar pain. I
CommentSorry, I got cut off. The CBS special will be broadast on Wed. April 7th at 10pm ET/PT. And I urge you all to contact Oprah Winfry. Hulda
CommentSorry, I got cut off.the CBS special will be broadcast on Wed. April 7th at 10 PM ET/PT. And I urge you all to contact Oprah Winfry. Hulda
CommentSorry, I got cut off.the CBS special will be broadcast on Wed. April 7th at 10 PM ET/PT. And I urge you all to contact Oprah Winfry. Hulda
CommentSorry, I got cut off. The CBS broadcast on VV will be shown on April 7th at 10 pm ET/PT. Hulda
CommentHere is some information on Oxycontin Oxycontin is the controlled release form of oxycodone (Percocet). It is a pain medication approved for moderate to severe pain for patients who have to be on pain medication for more than a few days. This product is made by Pudrue Pharma L.P. of Connecticut. For the right patient with pain it may make a significant difference in his or her life and certainly takes some of the misery from pain out of their lives. It reduces the ups and downs of having to take pain medication several times during the day or night. Oxycontin has advantages over the other pain medications. These include: 1. No significance drowsiness or drug effect in most patients 2. Generally well-tolerated The main disadvantage of Oxycontin is its price and that in some patients it may lose effectiveness over time. Using the right amount of Oxycontin, staying with dosing schedule, and selecting the right patient is very crucial as to avoid side-effects and drug dependence. This is where the experience of doctor prescribing this medication becomes very important. Like all of the other narcotic pain medications Oxycontin has a list of side-effects and it may be habit forming and cause addiction. You can look at the list of side effects by consulting Physician Desk Refrence or ask your pharmacist for a print out. The side-effects can be avoided if the doctor selects the patient carefully, choose the proper dose of medication, and educate the patient about these medications, how to take them, and their side-effects. This drug should be prescribed only by doctors who treat painful conditions on a regular basis and are familiar with the use of narcotic medications.
CommentDK...I say send the letter to your Dr, but do what I did when I sent one to mine -I put personal/private on the envelope.He got it alright,cause he called me!Nipped that in the bud. My complaint wasn't about him-it was about one of his witchy receptionist.
CommentI have vulvar vestibulitis/ vulvodynia but I also have some other symptoms and I don't know if they are related or not. I know that some of you have mentioned this before - but I am just wondering if anyone else out there gets PERIODIC PAIN IN THE GROIN. Every once in a while I get pain on the left side of my groin and I can't link it to anything in particular - i.e. infections, etc. If anyone else has experienced this, can you let me know. I also get occasional PAIN IN MY LEFT BUTTOCK. It feels like muscle pain because I can stretch it out, but then it comes back. Has anyone else had something like this?
CommentA friend of mine suggested that we not only email Oprah's producers, but that we call Harpo Productions in Chicago and speak to a producer on the phone. Does anyone else want to do this too? I wonder if they'll actually connect us to a producer though.
CommentChristie, Regarding your groin pain--I too get pain that travels down from the vulvar area into my thighs or buttocks. I was told that was due to a muscle spasm from the pain or possible nerve damage. I'm not sure that is what you are experiencing but I hope it helps you.
Commentchristie- not only do i get terrible pains in and around the vulva which are sometime stabbing pains and sometimes feel like a charlie horse, but for years now i get a charlie horse that is so strong that when i get them i am stuck in what ever position i am in when they hit. it usually runs from my right side right around the hip bone and it radiates down and across my entire my pubic bone and into my bladder area and sometimes even down the inside of my thighs. i have had every type of test and seen every type of doctor and went so fars as to have a hysterectomy trying to get rid of the pain. unfortunately it wasn't until after my hysterectomy that i found a vulva specialist who told me that the pain was also associated with the burning. my problem is definately due to two separate tail bone injuries and so is nerve damage. i am so thankful to talk to others with this problem but equally sorry that you are in this kind of pain. i pray for each and every one of us. to DK- definately send the letter! it is for each one of us who have been humiliated, misdiagnosed, scared, made to feel like a freak, not to mention been called a hypocondriac. please post and let us know if you get a response.
CommentChristie and Diana, I get pain in the left groin area also and I determined that the only time that I get this groin pain is when I have infections going on. I wish I knew what causes me to get that pain only with infections and not at other times. I hope that this is of some help to you. Also feel free to drop me a line any time.
CommentMy first entry; but I have been following this site for a couple of years. I too am a patient of Dr. Richard Reid. He offered hope at the lowest point in my 16 year battle with this horrible disease. He is no longer available for those of us in the US, having moved to another country after losing a lawsuit to Jeffrey Fieger. I continue to search for a cure--not just treatments. Has anyone read the book by Dr. St Armand about Fibromyalgia? Although I am drastically better since treatments with Dr. Reid, the symptoms continue to return and haunt me psychologically and physically. Sex is still rare and frightening to contemplate. I recently purchased Dr. St Armand's book and was impressed by his knowledge of the integral diseases associated with Fibromyalgia. Although I had only just begun to suspect I had Fibromyalgia in addition to Vulvadynia, his book led me to believe I have suffered a variety of diseases--not just VV. After reading the book a few times over, I decided to try his treatment. Unlike most of the other treatments I have tried over the past 16 years, his seemed simple and without risk--so why not. I'm 40 days into it, and everything has progressed exactly as was predicted in the book. Much of what he wrote has validated my years of suffereing. My question to all is this, has anyone successfully used the guaifenesen treatment for FM or VV? I would encourage anyone to read his book and consider what he says. He makes such good sense, and though it may not be a cure-all or fix for all of us, to me, it offers real promise to many of us who have little else to try. I will try to update this mail as I continue my treatment. I am about 45 days into it and I have committed myself six months before I throw in the towel. So far the FM symptoms have gotten so much worse, I now believe I have had it all along--but focused on the worst aspect of this disease--the VV. According tothe book, this escalation of symptoms is a good sign. The VV has gotten somewhat better at times, but since Dr. Reid, it has never gotten as horrible as it was when I first saw him. Regards to all of you who like me are searching for answers and solutions. Again, I highly recommend the book. More info is available on the VV web sites. L
CommentFor Regina C.- Often we have a chemical sensitivity to the base of medications. Some people have been successful with estradiol formulated in vitamin E oil. I have made much recovery with the guidance of the Vulvar Pain Foundation. I have been on the low oxalate diet for 5 years, timed calcium citrate for 4 1/2 years (thank you Dr. Solomons), N-Acetyl Glucosamine 3 years (Solomons), tri-cyclic antidepressant, Zyrtec antihistamine, 1800 mg Guaifenesin(Dr. St. Amand), magnesium. Pain meds and muscle relaxants for fibromyalgia have helped the VP too. With careful management- comfortable clothes, A&D ointment, drinking lots of water and following the low oxalate diet, I have become more and more healthy. I am grateful that I never went the surgical route. So many women have told me that they are "never the same down there" following the surgery. So many of us have fibromyalgia symptoms- this is a complex metabolic disorder for most of us. Surgery gives relief for a limited time. Then oxalic acid builds up in the remaining tissure and a person is worse off than when they started.
CommentIn response to MLD's entry on 1-12-00 about her vulvular vestibulitis: I was diagnosed 3 years ago and had it a year prior to that. I ended up at the University of Iowa Women's vulvular and vaginal disorder clinic in Iowa City. I still have some pain almost everyday, but not as bad as in the begining. I was given a topical cream to use that was in a test study. I also ha the vest. ducts burnt shut. This helps some more than others. I use all white toilet paper w/ no chemicals/scents, baking soda soaks, Crisco liquid oil to protect the inflamed skin, all white cotton underwear and All free & clear laundary soap-no fabric softner. It has been a hard road w/ dealig with this and there is nothing to make it just go away. I am better off than many, however, the pain effects my life in so many other ways. I know it's hard to do, but I find reducing stress also helps keeps flare-ups down. Hope this helps!!
CommentI have had my vvs/vulvodynia successfully treated by a combination of surgery and physical therapy. It was NOT laser surgery, which I hear should be avoided. I had suffered for about three years previously, since use of monistat for a yeast infection. The surgery cured the vvs painful points (with no scarring or anything at all) but not the burning vulvodynia-type symptoms. I live in the Boston area and would be happy to refer anyone to either the doctor or the physical therapist (a physical therapist specializing in women's health issues who has treated lots of vulvodynia patients. Dr Glazer referred her to me when I emailed him - she is great). It is so wonderful to have experienced virtual complete relief of these problems which had bothered me substantially for many years. I am fully enjoying my marriage and am expecting my first baby. Please email if you're in the Boston area and would like more info. There is hope out there!
CommentI sent an email to OPRAH about 2-3 weeks ago and have heard nothing. Has anyone else sent one? By the way, is this show on CBS on Wednesday OR April 7 at 10 pm? Anyone know? Because April 7 is a Friday.
CommentI am happy to have read comments from others dealing with the same stuff/pain/crap I am. I am undergoing INTERFERON injections currently into my vaginal wall to "treat" my Vulvadynia. My pain is between 2-5 o'clock inside my vagina. I have tremendous pain during intercouse (which no longer takes place) with tissue that feels like is has tears. I was recently diagnosed with it after doing MY OWN research and educating my doctor about it. I want to know if anyone has received this type of treatment? Side effects? Did it work?? Any suggestions? I emailed OPRAH too!! Let's hope everyone tries to do their part to educated others about Vulvadynia. I look forward to chatting with you all! Lisa
CommentDoes anyone have Roseaca and/or scalp problems along with vestibulitus?
CommentVestibulitis
CommentI am back. Just wanted to let you all know that I just now emailed Oprah Winfrey. If I hear anything, you ladies will be the first to know. I suggest that every one that reads these postings send her an email. If we all do our part, we will be heard!!! I gave her a brief summary of what we vv sufferers have to endure!!! PLEASE, PLEASE DO THE SAME!!! Thanks......
CommentI've emailed Oprah twice and wonder if we'll ever hear back from anyone. Sue
CommentTo Lisa W: I went through interferon injections in 1998. I got the injections in the morning and felt like I had the flu for a few hours in the afternoon. The injections themselves weren't bad (I put ice on the area before the injection to numb it a little). Towards the end of the inections (#10 or so) I developed some small sores (which are common). They would sting when urinating, but cleared up after a week or so. Unfortunately, the injections did not work for me. I'm crossing my fingers for you!
CommentAfter suffering from vulvodynia for 3 years, and seeing many Drs., having laser therapy, biopsies, steroid creams and other medications, I was referred for acupuncture as my latest Dr. said the pain seemed to be related to the nerve endings themselves, and acupuncture can help that type of pain. I have had acupuncture twice a week for 7 weeks now, and the pain is almost all gone. It's wonderful to be able to exercise again, have intercourse with my loving and supportive husband, and feel that my life is not being totally ruled 24 hours a day by my vulvar pain. Has anyone else had success with acupuncture?
CommentI was wondering about acupuncture, how do you find a reputable doctor? Anyone have any ideas?
CommentI started suffering with all the same syptoms as everyone lists after my first child was born. It took me a year-and-a-half before a friend of a friend diagnosed me after antibotics and yeast infection medicines never cured me. I started the low-oxalate diet which worked great for me. When I became pregnant with my second child I deviated from the diet and found that I had no more symptons. It was great eating all the chocolate I wanted. After she was born I continued to nurse for one year and still had no symptons. The month I weaned her, the symptons reappeared. I am wondering if there is a hormonal correlation, and if so, what could I take to keep these horrible symptoms away?
CommentCatherine- Have you tried estrace cream applied topically to the area according to Dr. Wilhelms' protocal. The info. is at the Vulvar Pain Foundation website.
CommentCatherine, I also wonder if there is hormonal component to this disease. I use the Combipatch for hormone replacement. My doctor just happened to check my hormone levels and discovered that even though I showed no symptoms of menopause, my hormone levels were low. I have also started using Prelief. It is a supplement that can be purchased at most drug stores and grocery stores. Take two caplets before eating anything off the Low Oxalate Diet and I have had good success. I actually feel better than I have in 3 years. My doctor also prescribed Effexor XR 37.5 mgs twice daily. Recently, I began using Claritin for allergies and I notice that I am doing so much better. I'm not sure which of these meds make the most difference, but all 3 seem to be an answer for me. Good Luck.
CommentThe CBS special on Wed. April 7th is at 10pm.Title is Body Human 2000;Also: I e-mail Oprah Winry and got a confirmation within the hour. the e-mail adress that sent t he confirmation was : topicalert@oprah.com Hope this helps.
CommentThis message is for Marilyn and everybody else that wants to watch the CBS specia. First of all, I got the info from the Natl. Vulvodnia Assn. newsletter and clearly says Wed. 7th. However, since the 7th is a Friday, something is wrong here. A phonecall to the Assn. is in order. But it could have also been in the year 1999? it is not clear from the newsletter> I apolgize for the confusion. Hulda
CommentI really don't want to put my name on this. I feel like this is a personal struggle. I had vestibulitis for three years following a low dose prescription of tetracycline for what I was told may be the beginning of rosacea. After that, I thought I had a yeast infection so I treated myself with an otc medication. It made the itching and pain worse, so I made my first of many trips to the doctor. I was given a stronger medication for a yeast infection. That didn't work. I tried a sulfa drug and was extremely allergic to it. All the while, the burning and itching and pain continued unabated. I switched doctors a few times, was given medication for vaginities, was referred to a psychologist, and finally found a doctor who actually gave it a name. It wasn't until I stopped taking anything for it that it actually let up for a while. (not immediately) I recently used a topical antibiotic (on my face) and the symptoms of vestibulitis have returned. I really feel that antibiotics (bad reactions to them) are one cause of this. I also feel that I learned from the last time NOT to go in for all the medications doctors like to prescribe until they get so frustrated with you that you feel as though they are angry with you for not improving. I am going to try the B vitamin supplements, stay away from jeans etc. I have come to the conclusion that stress does play a role, the time in my cycle, and most importantly I will avoid antibiotics. Reading these messages makes me really sad.
CommentTo the lady who didn't put her name on the post prior to this one.... I totally agree with you that antibiotics do stir up trouble in the vaginal area and one should take great caution about any medications BUT please be advised that Vitamin B and B Complex will cause the Vulvodynia to re-occur or become worse.Trust me.....I found out the hard way on that. I've since told others who suffer about my experience with those vitamins and once they stopped taking them they became much better....as in less pain and inflammation. The B vitamins are excreted through the urine and it will aggravate the condition.As far as not waering jeans,etc. that is a good idea.I try to stay with loose fitting cotton pants-IF I wear pants at all.I mostly try to wear long dresses and skirts.Mainly I wanted to respond to the part about your taking the B vitamins. No need to go through what I and others did if you can avoid it.Good luck!
Commentthe cbs human body special was broadcast last year. if you read the old guest books you'll see they discussed it last march.
CommentI take a B complex daily, and it doesn't affect me adversely at all. Not everyone responds to things the same way. But I also cannot take antibiotics with experiencing severe burning and urinary symptoms. Sometimes sex causes pain and sometimes not. Everyone has to find out for themselves what causes problems for them.
CommentRe: Sue......you know everytime I post something here-you have a derogatory comment to make about it.Is it just ME you have a problem with? Just curious.I rarely post anything here anymore -mainly due to people such as yourself and most probably won't post here again.I've found another support group in which there are no problems with such rudeness.Exactly how many woemn have you spoken to who use B complex vitamins anyway? I've talked to many and after they stopped using them-their symptoms abated dramatically.
Comment1st time site user. this is great! well, i have had vvs for about 2 - 2 1/2 yrs., age 27 now, diagnosed very quickly b/c a friend told me about it & i asked. i have been using cortisone( my savior!) from the start & been on amytriptilene for about 7 months now. it worked great. i was pain free for about 4-5 months. but recently i had a flare up again. i was very discouraged. i think w/ me sress plays a role. my dr. told me it will come & go in cycles. he also mentioned about the diet thing this time around.. can anyone please give me more information about this oxalate stuff?! what, why, and what foods? it wasn't until this flare up that i started doing more research. the clinic gave me info about the nva newsletter, & here now i found this site. i too have a very supportive partner, but i feel so guilty sometimes. i hated going from someone who was very active sexually to now only when i can handle it. i've tried using xylocaine for intercourse, it's great during, but when it starts wearing off- look out! should i subscribe to the newsletter? should i visit a support group? i guess i can check here more regularly. please feel free to e-mail me. just put vvs in the subject so i don't think its spam & delete it . p.s. do i have to give up chocolate?
CommentDr. Glazer, I've been going to GYN doctors for years explaining my symptoms and up until now, I was not believed. My husband wasn't too understanding either. My new GYN doctor did all the routine tests to rule everything else out, also did biopsy. That was more than any GYN has done to help me. Everything came back fine with the exception of inflamation on the biopsy. I was given Elocon to use for the inflamation. The pain is slightly less after using cream but I am weary being more aware of this part of my body every second in my thoughts. I am tired of hurting. My doctor has talked to me, explaining about Vulvodynia. I've never heard of this before and I am angry its happen to me. This is a womans worst nightmare! I want to help myself and others by volunteering for experimental therapy / treatment. I know I must hurt pretty bad, there was no difference in my pain right after having a biopsy. My doctor told me I would feel sore after the biopsy. I felt the same pain from my biopsy. I couldn't tell the difference in the pain. My doctor has talked to me about antidepressants. I am already on Prozac, have for years. The difference between Prozac and what my doctor wants me to take has been explained. I would like you to be more candid with me on all the different treatment methods. I read all that I could on this, with the latest from 1998. Has there been a breakthrough treatment since 1998? My understanding is, as a last resort, removing that area completly with surgery. What does that do to a woman's sex life? Is there any sensitivity sexually after such an invassive surgery? Does this take away the pain and leave you with no sex drive or orgasams? Sometimes I feel I'd rather do the invassive treatment of what needs to be done and skip the long term of trying less invassive treatment if nothing new has been found in this research. I am in my sexual prime age, at least thats what I have always heard. I know you get hundreds of letters everyday, I hope my letter, in some way, really does reach you. My emotional feelings are wearing thin, I am so tired of hurting in my most private, intimate part of my body. Please reply soon, I am depending on your support. T.C.
CommentGAYLE; WHAT THE HELL IS YOUR PROBLEM? I'M NOT CRITICIZING WHAT YOU SAID. I'M SAYING THAT B VITMAINS DON'T BOTHER ME. I'M NOT SAYING THAT THEY DON'T BOTHER OTHER WOMEN WITH VULVODYNIA. . Gayle: You obviously have a problem. I'm not saying that B vitamins may not bother other women; I'm saying that they DON'T bother ME!! GET A LIFE!!!!!!
CommentJulia, Lauren,Sue, Your stories touched me, When women are so overwhelmed with this pain, there are never enough words to express what we go thru. I WOULD in a heartbeat show my face on Oprah, because I want the pain I feel associated with a name and face. I am not just another satistic. I am a real person just like all of you. I am strong with my convictions for what is right and fair. Tell me what I can do to help this group get the publics attention. Oprah is a great start, she is compasionate and people watch her. Please include me in your support group, up until now, I was alone and did not know what was wrong with me. I really thought I was the only person going through this. This is such a relief for me to know you all are at the touch of my computer. I read alot of your letters and I wrote as much down as I could in regard to medications. I plan to ask my GYN about all of this. Until there is a cure, I want to get some relief from pain, just to feel close to normal again. Sex, the thought turns me off so much. My husband tries to understand, but when I was dignosed with this a few days ago, my heart sank because I was told there is no cure. I want my life back, and going public is a long shot, I'm ready to talk to anyone who will listen. All of you ladies reading this, please write to me. Knowing that your here makes it a little easier trying to cope. Terry
CommentThis is my first time at this site. This site is so bittersweet. It is such a relief to hear that so many other women are fighting this same problem, yet at the same time I can see that there are alot of women still struggling to find some relief. My problems started very similar to others. I had a yeast infection it went away, then came back in 3 months. It went away, it came back in 3 months. After the third one I didn't have pain, but something didn't feel just right. In the midst of this we moved, and my husband and I both started new jobs. Then I had bacteria and yeast etc. etc. After all of the treatments were said and done, and I was infection free in June of 99, I was left with a burning irritation that would not go away. My doctor diagnosed Vulvodynia and prescribed Clobetasol for 2 weeks with tapering off. It took the edge off, but that's all. At this time my husband was laid off by the company who had relocated us to Michigan (the day I was diagnosed with Vulvodynia) and we packed up and moved in with my in-laws in Ohio. I went for 2 months doing nothing because of no health insurance. It was a hot summer, and I was miserable. So I went to a new doctor who said he sees irritation like this alot in women with diabetes, and had my blood sugar tested - which was fine. He also wanted me to be tested for HIV. I was already tested in New York whan I had my daughter in 1997, it's the law, and told him it was negative. He then prescribe Clobetasol and said I'd need to use it for months, and probably stay on it. I used it for at least two months, but it only took the edge off, intercourse still burned. In september I saw a doctor in Cleveland who tried a 2 week course of Diflucan, treated me for a high strep count, and a bacteria infection. All the while he said I could continue on the Clobetasol. Intercourse was impossible. In January my sister found some info about Vulvodynia on-line and sent it to me. I immediately tapered off the Clobetasol. I saw a dermatologist in February, had a massive yeast infection, and then saw a new ob/gyn. He treated me for bacteria infection-metrogel which triggered another massive yeast infection. At this point I feel the best that I have ever felt, but still have burning upon touch - no intercourse. I have an appt at Cleveland Clinic tomorrow. Does anyone know if there are any doctors there that are knowledgeable? The recepetionists always tell you at any doctors that they are. Also, I had a biopsy done of the vulva in March 1999, and was diagnosed with HPV, no genital warts visible. To Anyone: At times when I am infection free, my ph is not what it's supposed to be, any insight anyone? To Catherine: Just to let you know, all of my problems started ONE MONTH AFTER I WEANED MY DAUGHTER. To anyone: I've read some info that this problem is actually atrophic yeast? Any thoughts? I would appreciate any feedback. I have been dealing with this for 2 years, and would like to have another baby..
CommentLeann, I have been treated for yeast infection with Metrogel. This was only after yeast infections one after the other. I felt dirty and I could smell something the doctors say was not there. I had alot of pain shooting up my inside at that time. Metrojel did help for a little while, but I was not totally pain free. Intercourse was something I just couldn't do anymore. This pain stays with you. Your main concentration and focus is on that. A pain in such a personal area in which there is no answer for is frustrating. I just sent my letter to Oprah and I also included copies of everything online about this disease. I am hoping that if they take time to understand, we will prevail in getting a spot on her show. Everyone, I really haven't heard from anyone directly, but picking up along with your fight gives me more hope than I had 4 days ago. I am new to this site, I really need a friend. Terry
CommentOne thing I forgot to add in my last text, I also had a schwannoma (benign nerve tumor) removed from the back wall of my abdomen in 1989, which left me with a numb spot on the front of the pubic hair area, and also some weakness in a muscle in the top of my thigh. Thankfully no other numbness in vagina, vulva or clitoris. Currently I have 2 schwannoma's in my spinal column which are monitored yearly with MRI's, and one in the rib cage - which causes me alot of pain (tolerable). I'm wondering if the tumors in my spine could be causing vulvodynia, I have an appt with my neurologist this week. Anyone else with this condition?
CommentI have visited this site several times in the past two years as a way to remind myself that I am not alone. Thanks.... I am a 22-year old college student who has been dealing with this problem for approx. two years. The symtoms have evolved like this: Four months after my first sexual intercourse experience, I started off getting yeast infections along with UTIs, then I started having pain upon primary penetration of sexual intercourse, (This made me think that my partner was too large and my skin was not elastic enough), I had the little cuts that made using the restroom something that I dreaded because it would burn so badly that tears would come to my eyes. It ruined my relationship because I was paranoid about my partner's fidelity, too late finding out that it was not him at all. I was tested for diseases over and over... Guess what?...disease free! There are many times when I wish that I had had one of the STDs that there was a quick cure for because then I would not still be dealing with this. I have since had a second intimate relationship. At this point, the problem would exist during intercourse too but was more internal. It was as if the friction would make the walls inside of my vagina extremely hot like an oven. The burning during urination was still there, too. My main problem with this besides the physical pain is the mind/body connection. I feel like whether I want to or not, I resent the person who "seems" to be causing this pain. I can have sex sometimes but after a while it becomes more difficult and duration is a problem. When I am having a bad day with it, I wish that my partner could read my mind and not bring sex up so that I don't feel so guilty, but this is an unrealistic expectation. Since I don't feel that this is fair to me or my partner, I have decided to focus on other things in my life like my career and school and put intimate relationships on the backburner. I have tried almost all of the things suggested to help this problem. I recently met with a doctor in Jacksonville, FL who Dr. Glazer referred me to. His name is Guy Benrubi M.D. He assessed the problem and a cure that he says has an 80% success rate being that I am considered to have secondary vestibulitus, since there was a time that I could enjoy sex 100% pain-free. He suggested removing some tissue (I wish I knew what exactly he was speaking of) because I supposively have some overactive-vestibules that are attacking an unexisting problem in the painful area. he also said that my hymen is still intact. I am wondering if: -you has been treated by him and your experience. -if anyone else has heard of primary and secondary cases. -if surgery is a good option. -if this assessment was too quick. -if you have had the same type of pain evolution. Lastly, a little encouragement. There is definitely a sense of pride in knowing that even though you have a great disadvantage that many others do not understand or even know about; you can get through it. Pain is weakness leaving the body. When you do finally get through this like we all will, you will have a better understanding for others in general. There are people around us everyday who look happy on the outside, but have problems that affect their everyday lives that you couldn't possibly fathom. I know because I am in a similar situation to all of you submitting your experiences. I hope and pray that some medical advances will be made soon to help us all! The more understanding you are to others; the more understanding they will be of you.
CommentI must agree that people making remarks to others posts are not necessary,especially when the person was trying to be helpful.It's not just always better to let others suffer First when someone else who has been through the trial & error of things can let them know what seemed to cause them problems. I always appreciate the advice of others who have already found the cause of their discomfort.So for someone to say-let them find out on their own if certain things bother them-well that is just wrong.Arguing and bickering and cursing at others will NOT help anyone.I propose that if someone here doesn't like what another has posted....rather than comment against what That person has said.....simply ignore the post or post a comment without being rude to anothers opinion.I read the posts I'm referring to and I think the person who posted first was trying to be helpful...at least it seemed that way to me.I was in fact taking B vitamins too and having terrible burning and am now going to stop taking them and see if I get better. I researched on the net and did indeed find that the excess B vitamins are excreted through the urine,as the person indicated,so it makes sense that it could cause problems.Anyway....I had not visited this site in a while and if this is the type of support women get here-cursing at others and such,well I won't be back and will tell the ladies I recommended this site to,not to bother either.It seems that this chronic pain is getting to some of us-and some should try to control their tempers and not be telling women in pain to get a life! I mean.......really....
CommentI have had vulvodynia for 11 years. I really believe that it is tied to hormones and have said that to my doctors. The doctors say that not all women have the pain cyclically. Well, now that I am 41, I have the pain all the time and I still think it is due to declines in estrogen. When I was pregnant, 5 years ago my symptoms disappeared. The doctors put me on a low dose birth control pill to try to regulate my hormones. It doesn't seem to be working and I have noticed that some women say that birth control pills make them worse. I swear if it weren't for my daughter, I would really think about ending my misery. I am already on an antidepressant and I don't know what to do now. I am being treated at U of M hospital, but it is all trial and error and I am sick to death of trying things that don't work. I am thinking of asking just for some pain medication to try to cope better as long as it doesn't turn me into a zombie. Also has anyone heard of GHR 15, it is a human growth hormone releaser and supposed to take your body back up to 20 years. Check out the web site GHR.COM. I will let you know if I decide to try it and if it works. Thanks for listening.
CommentHi, I'm a little afrais to give my e-mail address at this time. I've been suffering with this problem for 4 years. I am 42 years old. I have always been a little sensitive, not just physically, but emotionally. As I near menopause, my naturopathic doctor told me that it often gets worse (I suffer from anxiety). Geting back to vulvar pain, though, initially mine was very painful, I saw Dr.Benson Horowitz in ' 96 and he diagnosed me. I was on Nystatin for awhile, found to have yeast all over my body (though, not any vaginal discharge, oddly), and gradually I felt some relief. I've used Estrace cream, but have gone from using it twice a day to maybe once or twice a month. Something I recently tried, without even thinking it would help the vulvar pain, was the Atkins diet. I was on it for about a week, but during that time, although I felt a little Blah in my stomach (I've heard that that passes) I had total relief from the vulvar pain, as well as little aches, pains, and discomforts I never gave my heed to! With a large family to feed, it's hard to resist sugar and starches, but I am going to try to go back on the diet. I had so much ebergy, too, and lost weight! Just wanted to know if anyone else has tried the Atkins diet. Thanks
CommentHi! I have GREAT news! There really is hope for women suffering from chronic vulvar pain! i had constant burning and itching for months last year at this time, and was misdiagnosed several times that it was a yeast infection. i ended up making what started initially as irritation a million times worse by actually burning my skin with antifungals. anyway, it is a year later and i am totally cured. i used estrace cream nightly for six months, and realized that most of this was completely stress related. i was at a transitional time in life (college to the real world, with other roadblocks) and between burning my skin, worrying that it was a recurring yeast infection and stressing out that it may be something serious, i ended up almost doing it all to myself by being so overwhelmed when the drs. kept telling me there was nothing wrong, but the burning and discomfort persisted. the day i was officially diagnosed with vular pain, my pain decreased nearly 80%! just the fact that my fears were at ease. WHATEVER YOU DO, do NOT take Elavil, it totally changed my personality! and it was the lowest dose possible. anyway, i know i am rambling, but there is hope, you just have to find out what is causing your pain, and just keep praying, there is hope for all of you too! best of luck, liz
CommentI need advice from women who have had vv before or during their pregnancy. I am currently 2 months pregnant, and have had vv for about 6 months. I need to know how vaginal deliveries have affected anyone - if it has made the problem worse, or possibly even better? Feel free to write to me at the e-mail address I've listed. Thank you so much, and good luck to everyone!
CommentHi all- After being diagnosed last month. I was put on amitriptlyne. I was on it for 5 days. I noticed a difference in my emotions and I was noticing the pain more. On March 5, I began taking Sam-e It is a natural medcine that is used to promote emotional well being and to help for joints. I took one pill (200mg) for a week and a half. Then I started taking 2 pills (400mg) one in the moring and one around 8:30 pm. I am taking this for the pain. I feel relief. I notice if I do not take the med. I have burning. Has anyone else tired this? I purchased this at wal-mart. It is Nature Made brand. It is a $1.00 a pill. I think it is worth a try for anyone out there.. Also, to all the women with pain in there buttocks and thighs-- Is this a sharp pain, muscle ache, etc? Please let me know. Thank you. Unfortunatley, I belive I am experencing that now. Keep your spirits up..
CommentExcuse me, but if someone like Sue can't say anything without you guys accusing her of cursing (and if you guys think "what the hell" is cursing you need to get out more) then there is a real problem. Wouldn't any of you react the same way if some weirdo accused you of attacking her personally because you made a comment about B vitamins?
CommentThank you Ally. I couldn't believe I was attacked either for having an opinion other than Gayle's!!
CommentShannon, Regarding thigh and buttock pain For me it can differ. Sometimes it feels like muscle pain, sometimes like a burning and other times prickly. Sometimes it feels like the nerves are exposed and any contact just makes it worse. I know that doesn't help much but I can't explain it either. Diana
CommentDr. Glazer,I think the very uncalled for remarks made by Ally and Sue(who I believe are actually the SAME person) should be removed from this site.Cursing at someone AND calling them a weirdo is THE most immature thing to date that I have seen on this site.And though I don't post often,I have thus far enjoyed the infor. I've gained from your site.But those post need to be removed.Obviously every woman reading this site is in emtional and physical pain and to be called names and ridiculed is a line that this person just stepped over.
CommentI was wondering if there was anyone in Australia who has this problem and if they know of any doctors willing to treat it. My pain isn't as bad as the other women on this board so I am reluctant to seek medical advice as I've heard that misdiagnosis can worsen it. And I doubt many doctors here know about it. Does anyone have pain in cycles. So far it seems that with me it starts some days before my period is due and continues through it and for some days after and then stops. I don't think oxalates have anything to do with it as I have eaten high-oxalate foods at times when I don't have pain and nothing happens until maybe a week or two later when I was expecting the pain anyway. Does that make sense? Or does oxalate sensitivity take that long to show up?
CommentTrace, I agree with you about it being hormonal. I used to have symptoms similar to you. About a week before my cycle, I would have a couple of bad days. Then once I started it was pain during that week. Then about a week after my start date, I would have a couple of bad days. The other reason that makes me think it is hormone related is that my symptoms disappeared totally when I was pregnant. They reappeared once I had the baby and my hormone levels went back to normal. Also, since I turned 40 (I am 41 now), it has been sooooo much worse. I can't describe how much pain I am in daily. I went on Birth control pill to try to regulate my hormones, but it has not helped and I am having a heck of a time with breakthrough bleeding. I have an appointment next week and I am hoping they will come up with something new and exciting for me to try. I sent you a personal email about a great doctor I know in Australia. Good luck to you.
CommentI forgot to mention this when I posted last time, but for you women that have mentioned the muscle pain, like buttocks etc., have you looked into fibromalgia? I have heard of woment that have had both fibromalgia and vulvodynia, I don't know if there is a link medically or not. Also, I am not totally familiar with the symptoms of fibromalgia. It is just a thought. Hope that helps some of you.
CommentThis is for Liz - Congrats, so glad to hear you are pain free - can you clarify for me, did the Estrace contribute to you being pain free? Thanks.
CommentTO GAYLE AND SUE. Listen, we blow up. I do. I've been at this for 12 years. We're basically all in the same boat. Some things work for some and not for others, but we're really are trying to help one another. We're disgusted, frustrated, and it's all we think about. REMEMBER, WE NEED EACH OTHER. WHO ELSE IS GOING TO LISTEN!!! Now. Make up.
CommentHi Dr. Glazer, You may remember me, I'm not sure...I was a patient of yours in Cambridge, MA at The Marino Center from 1996 -1997 where we practiced biofeedback. At that time I was referred to you by Dr. Michlewitz. Once you no longer practiced at The Marino Center I continued to see Dr. Michlewitz on a regular basis with unsuccessful treatment of my Vulvodynia/Vestibulitis symptoms. At the end of 1998, being at my absolute wits end with my burning and painful symptoms, my OB/GYN referred me to Dr. Elizabeth Stewart in W. Roxbury, MA. It was there where some light was FINALLY shed on this life altering condition of mine (and so many other women). After (another) extensive physical and emotional exam, during discussion I was reminded of an injury I had had to my hip just about 5 months before I began having vulvar pain. At that time, I saw a physical therapist who then confirmed that I had rotated my hip (that I was 'malaligned')...The 'problem' was supposedly treated and cured with therapy and exercises...Little did I know that 5 months later when I began having vulvar pain was probably a direct result from that very injury. I literally was walking around for 5 years with my lower back/pelvis out of line (or rotated);thus causing a referred pain to the ever so close nerves of vaginal area! I was immediately referred to Physical Therapist Holly Herman in Cambridge, MA who confirmed our theory...I am suffering vaginally from a 'hip rotation' and have been undergoing weekly massage and physical therapy to 'keep me in line' and lessen my vaginal pain. I have been with Holly now for over a year and have seen signficant results. I am also taking Elavil at the same time. 'Significant results meaning, longer periods of feeling pain free....But I do suffer from time to time with extreme pain and feel instantly as though I'm again at my wits end all to quick. 6 years into suffering from vulvodynia or vestibulitis, and I have little confidence that I will ever feel 'normal' again forever. This 'disease' has not only affected me and my lifestyle negatively, but my marriage as well. I have been fortunate enough to have 2 healthy children through it all and they and my supportive husband are honestly what gives me the drive to keep on fighting this. Anyways, that's my update... Please feel free to e-mail me at TMDMcPhee@AOL.Com anytime with any updates and or information regarding all of the above.
CommentI'm back AGAIN. Went to see a "specialist" I was really excited about this. Gave me some cream for the inflammation and Lidocaine. Cream is helping. He took a culture because my chronic infections of 12 years may be mimicking something else. P.S. culture came back--no mimicks--just the regular bacterial infection. DO YOU FIND YOURSELF NOT ONLY EMBARRASED TO BE GOING TO THE DOCTOR AGAIN, BUT TO THE SAME DRUGSTORE. I guess I'm just depressed right now. Was kind of hoping that this "culture" was going to be a promising lead. Thanks for listening.
CommentHi Lois: I'm sorry you had a disappointing Dr. visit and I understand your depression about it!! I hope you get relief from the cream and lidocaine. Sue
CommentMy name is Cindy and I have had vulvar vestibulitis for 10 years. When this first started in 1990 no one knew what this awful condition was. It took about 2 years to finally get the right diagnosis. I have had many bouts with yeast infections, bacterial infections, irritation and excruciating pain. Treatments that I have tried include surgery, low oxalate diet, anti depressants, creams, antibiotics and Inferon injections. Of all the treatments I have received in the past, the only one that has given me some relief are the Interferon injections. In fact I am starting them again in about a week. I am also very lucky that I have a very wonderful husband who I have been married to for 16 years. Our sex life is basically non existent. I am also lucky to have a 15 year old daughter who is very understanding . I am in pain almost all the time. I am glad I found this sight and hope and pray that a cure is found for all of us that are suffering on a daily basis.
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CommentWow, so many things to respond to... Looks like I've had Vulvodynia since about 1998. More on that later, though. I'm currently living in New York City where I've been misdiagnosed a couple of times already this year. I haven't been able to find any doctors at all who would take me seriously, or even schedule an appointment less than two months in advice. I can be just as pushy as assertive as the next New Yorker, and I work in a hospital, so you would think I would have networked with a decent physician by now. Does anyone know of an M.D. anywhere in Manhattan or NJ who specializes or is even well-versed in vulvodynia? I am desperate for a recommendation but keep reaching belligerent secretaries, harried doctors, and beauracrtic HMO's. Suggestions anyone? Stacy, your story sounds very VERY similar to mine. I know where you're coming from. VV started up for me at the beginning of my junior year. I graduated with an English major as intended, but I've since begun pre-med work because of my experiences with misdiagnosis. It seems like medical knowledge is too important not to acquire first hand. I am no longer trusting jaded doctors to give me the "facts." Trace, there are several reproductive health clinics in Sydney that can be quite good for recurrent problems. They never managed to diagnose my VV, but they paid a lot of attention and tried thinking outside the box. They were the only doctors I ever encountered that were willing to concede that diagnosing it as a contagious STD was not a productive way to handle the mystery problem.
CommentFYI. A while ago someone mentioned that the NIH had refused money to research Vulvodynia. I went to their web site and found some contacts and asked the question if they had discontinued research because they only wanted to research fatal illnesses. Here is the resulting response from NIH: Dear Ms. Schmidt: This is in response to your e-mail regarding vulvodynia research. The NICHD has a strong commitment to women's health research and we are very interested in vulvodynia research. Last year we invited researchers to submit grant applications for vulvodynia research. While not all the grants were funded, one was particularly promising and the researchers are working closely with NICHD staff to clarify the research objectives. Earlier this year, we again asked researchers to submit grant applications that will lead to better understanding and better treatments of this condition. These applications will be received shortly. They will be reviewed through the normal NIH review process and we anticipate the grant applications will result in a robust investigation into the causes and treatments for vulvodynia. You might want to look at these web sites for additional resources, if you have not already: . http://www.tldp.com/isue/166/166vulvo.htm I hope this information will prove useful and informative. Carol Florance Public Affairs Specialist National Institute of Child Health and Human Development .
CommentHi, my name is Tammy. Yesterday I posted here for the very first time. As you probably read from my first post, I have been suffering from this awful 'thing' for just about 6 years now. I have never wanted to talk about it with ANYONE in my life, never mind over the internet! But after reading all these posts for the very first time, my heart really goes out to all of you (and me too!) This really sucks and it is so not fair. I'm sure everyone knows 'it could be worse', but this is BAD. I plan on continuing to read these posts and keep on posting myself as long as I'm welcome. Thanks for listening.
CommentMarylin, In regards to your post today I must tell you that this is simply not the case. Since you chose not to leave your email address, I am forced to say this publicallly. You have been lied to by the NIH and you bought their line of crap, hook line and sinker. I have been contacted by a WebMD reporter who has been working on an article for a long time. Her research, will will be out in about 2 weeks more, will show that while the NIH has a posting on their site claiming to be giving money for Vulvodynia research, they have yet to give one damn dime out. There always seems to be some reason why they turn down a proposal. Perhaps you should ask Dr. Ledger of Cornell University in NYC, the BOBYN-In Chief why they felt he was not qualified to run a study and conduct research with their money. You can easily find his phone number on Cornell's website. Any women who want his information so you can learn more about Dr. Ledgers findings-please feel free to email me at vulvodyniapain@aol.com. I smell a rat. And I am not buying the company line! Lauren
CommentMaybe I should have said earlier where in Australia I am. I'm in Perth, Western Australia. It seems like most of the clinics where doctors would know about it would be in Sydney or Melbourne. My pain seems to be unrelated to oxalates or nerve damage (as I've never had any spinal injuries). It seems to be hormonal, flaring up just before I get my period and lasting a few days after I finish. I know if I went to the doctors they'd probably want to put me on the Pill and I know from reading other people's posts that it can make the problem worse. And if creams can make it worse and anti-depressants cause weight gain what other options are there? That's why I'm reluctant to see a doctor about it - in case treatments make it worse. I can't believe that there is no cure for vulvodynia. If Viagra can be invented why not a cure for this???
CommentHello friends, Its been awhile since I visited here. I have pick up some guestbook email friends and enjoy communicating through our direct email address. It is more private and a personal bonding grows from this. Wouldn't give that up for anything. These friends that have wrote to me on their own accord, after my first visit on this site ended up being my closest confidats. Thanks, you know who you are! Now, as for me passing down whats happen since being diagnosed last week. I can say with confidence ( its been one week I was diagnosed correctly). This was a milestone for me. But a tease of cruelty also. To be told that there is no cure, and researchers are more cluless than imagined on finding the culprit . I am ready to fight for my rights and make reasearchers do the job they were hired to do! Fight anyway you can people! Use those fingers and put our women power to work. I am starting some pain medication called Toradol, my doc said no when I asked for Oxycontin. She wasn't comfortable giving me narcotics due to the risk of becoming dependent with increase of dosage to keep me out of pain. She did however prescribed me some form of pain medication and that is a start. I asked her to put me on Estratest, after reading in here that many were having improvments from this. I am keeping my fingers crossed that I this does take the edge off my pain. I am so |
