My Experience and Treatment with Vulvodynia and Vestibulodynia
Hello Everyone,
I am a 24 year old female that has been suffering from Vestibulodynia for 5 years. First I am just going to cut and paste some emails that I have sent to other people that have been suffering with this same problem, instead of retyping everything. Everything below are symptoms that I have experienced with Vestibulodyia, and my story of how it started. If you are only intersted in the treatment scroll down to where you see the exclamation marks.
I started birth control around 14 or 15 like I stated in my letter, then at 18 I went off of it because I was getting ready to leave to study abroad in Norway. I left in August of 2003 and didn't have a period until about December. I also just found myself a Norwegian boyfriend at the time but we were not sexually active. On New Years Eve I stayed at his house and we had oral sex, the very next evening I had a burning sensation and a whitish discharge. However, I cannot recall any itching or odor. A friend of mine informed me that I most likely had a yeast infection and that I should try an over the counter suppository. Due to the fact that I was in a foreign country and did not have a doctor there, I went ahead and took her advice. I tried the five day suppository package and it seemed to help some, but then a day later it came back. I went and got another supply. About two more packages later, I thought it important that I tell my host mother about this problem so I could see a doctor. She took me to her regular doctor (not gyno) who did not check me out but just prescribed me diflucan. When the diflucan didn't work, I tried another stronger suppository and then a vinegar douche that my host mother told me she did in the 60's. I'm afraid I added too much vinegar because shortly after that a had more whitish discharge and more burning. Perhaps I really upset my normal vaginal ph...not sure. I went to three gynecologists in Norway in about a 3 month time period and each one would test me for everything (yeast,bacteria,std's,etc.) and the tests always came back negative. I still to this day don't know if what I had was a yeast infection because the tests always came back negative. I either never had one to begin with, or the medication I took affected the test results. Anyway, after the discharge went away I was left with a burning sensation in the lower part around the vaginal opening. One gyno advised that I go back on birth control and I did. It didn't help so I went off again. Three more months passed until I finally returned home. It took two visits to my gyno for her to tell me that i had vestibulitis. She then presumed to send me to someone else who knew more about this issue. From there I went to another doctor who flat out told me he didn't know that much about the issue, but he was willing to try some of the things he read about. First he gave me a steroid cream that just made it worse. Next I was given diflucan every other day for a period of about 3 months. No results. I was given lidocaine which numbed the area temporarily but also not completely. I stopped seeing him because his next advice was surgery.. scary! I sucked it up for another year because I returned to Norway. I was still with my Norwegian boyfriend but we might have only had sex twice that year because it was too painful for me. Sometimes it was hard for me to pinpoint where the pain actually was because now it was in the entire vestibule. The burning, stinging sensation would range daily on a pain scale for 1 to 10 with no known cause..it was so frustrating! I finally returned home the summer of 2005 to start college. I also started dating someone else, and the painful sexual struggle began once again. From 2005 to 2007 I sucked up the pain and tried different birth control from yaz, the ring, to ortho tricyclin, etc. Everytime I went on birth control the pain was worse. As much as I tried to figure out what was causing my pain, I could never arrive to any conclusions. But the fact that it was more painful on birth control was obvious. Then in the summer of 2007 things got worse. I started to have more burning with urination. I would take cranberry pills just to find out that they were making my pee burn more, along with wine. God, that was depressing. I figured I was now becoming more sensitive to acidic foods and that they were simply irritating to my urethra and my vulva. I then read that the tissue in the vestibule and in the urethra are similar. The burning became so bad that I finally found another doctor in the Columbus, Oh area (I go to Ohio State), who had a good reputation. Right away she put me on Gabapentin. When that didn't help she just kept upping the dosage until I was on 2400 mg a day. I am still on this but plan on getting off at my next appointment because it is clearly doing nothing for me. I have been on it for a year and a half. She also prescribed me an estrogen cream that I was to use nightly. Estrace irritated my skin so a got a special estrogen in petroleum base from the pharmacy. Sometimes I thought this made the skin feel better, but not entirely. Next she put me on the antidepressant Elavil. My body just couldn't handle it. I was tired all the time and never wanted to do school worse, plus it was doing nothing for my pain. Finally I started the biofeedback therapy with electric stimulation. Honestly, this is the only thing that seems to work about 30% of the time. Around this time I started to notice a trend. I had been off birth control once again for quite a few months, and I started to notice that the pain would get much better in the middle of my cycle for about 2 days. This point was around ovulation. I was so excited because now i was actually having a couple of pain free days a month with some sex drive. I told me gyno about this and the fact that birth control made it worse and she told me that that wasn't physiologically possible..what the hell!? During the same time I also bought a little handheld Tens unit that gives you electric stimulation if your vagina to help relax the pelvic floor muscled. Sometimes it works and sometimes it doesn't. I am know to the point where I want to find the underlying cause of my problem. I am sure that my pelvic floor muscles are very tense, but i believe this is because of the pain. Of course my muscles are going to tense up if I am in pain, but I do not think that tense pelvic floor muscles are the main cause of my problem, just a reaction of the vulvodynia. This same doctor also put me back on birth control, but I got off on my own after about 3 months because I noticed an increase in pain and complete loss of libido once again. With some research I have found that testosterone surges around ovulation, and is drastically lost when women are on birth control. I do not know if I have a hormonal imbalance, but I know I have absolutely no sex drive on birth control, and rarely have it when I am off birth control. I am so sick of being in pain and not having a libido and it definitely takes a toll on the relationship I am in now. I feel less of a woman, guilty, ashamed, inadequate, and sometimes insecure. Not only do I have to deal with this problem, but now my partner does too. It's a horrible feeling and some days I am so close to just leaving to deal with this by myself.. Sorry I wrote you my entire life story, but I felt it important to add details. Thank you for listening and if you could inform me of some of the steps you took to treat yourself. How did you know for sure you had a hormonal imbalance? I know you have hair loss and other signs, but I don’t seem to really have other sings except sometimes I break out on my chest. My periods were even fairly regular even off birth control. I don’t really know what to look for and I don’t know how to go about treating it even if I thought it was a hormonal imbalance. I am also thinking about going to a different doctor in a different state. I would like to get an appointment with Andrew Goldstein.
My burning/stinging pain is almost constant, but the pain fluctuates on a pain scale of 1 to 5 throughout the days and throughout my menstrual cycle. A trend that is very obvious to me is the decrease in pain around ovulation and the increase during the rise in progesterone (towards the end of the cycle). I can actually have sex at the time that I am ovulating and enjoy it somewhat but it only lasts for about 2 days. so weird! However, when I am on birthcontrol I have pain which is worse throughout the entire cycle. Birth control = shit. If you are on it, get off! My doctor keeps telling me to go on because physiologically it couldn't make my problem worse...I want to smack her...does she think I am making it up? I also noticed that when I eat acidic foods and especially wine, it burns more at the end of my urethra and causes more burning in the vestibule. Do you sometimes have burning urination also? I am sometimes confused on whether I should call my problem vulvodynia or vestibulodyina because the pain is strictly limited to the entire vestibule area, but it is constant. Yes, touching it provokes more pain, but I have definitely feel the burning sensation just sitting around or walking. Some women the have compressed nerves in their lower back or spine get vulvodynia, but also have burning or shooting pains in their lower back or thighs. This is where the gabapentin comes into play, since it is designed to block these pain signals. I have been on 2400mg of gabapentin for a year and a half and I believe it has done NOTHING. About two months ago I started to get off of it myself and now I am down to 600mg a day. Although this is without my doctor's consent, I really could not give two shits right now because I hate being on drugs and I am fed up with my doctor who thinks she knows my body better than I do. Since that gabapentin did not work, I believe there is more to my problem that just "nerve pain". There have been women whose vulvodynia has been due to hormonal problems. Are your periods regular? Do you ever get headaches? These could be signs that you have hormonal imbalance which is causing the vulvodynia. In my case I believe that hormones are related since my pain fluctuates throughout my cycle. Now, a hormonal imbalance might not be causing MY problem since my periods are pretty regular, but hormones definitely affect my pain...why? Possibly because your vestibule tissue needs adequate levels of testosterone and estrogen. I have tried estrogen cream on the area with no success but have never tried testosterone cream or a combo of both. This is something I am working on. I found a doctor named Andrew Goldstein who seems to be the best..here is his website..one should definitely check it out. http://cvvd.org/ Read everything he says about the different causes of vulvodynia and vestibulodynia. There seems to be many different causes and therefore many different treatments. If you do have an abundance of nerve cells that have grown in the vestibule tissue, then surgery or removal of that tissue could also help. I am scheduling an appointment with this doctor in the summer. If you have any questions feel free to email me again. Btw, has the gabapentin cream helped at all? I read about that but my doctor doesn't prescribe it. I get lidocaine which kinda numbs the area for about 2 hours and then goes away. I also have an E-stim unit in my house which sometimes helps some with the pain, and I do my pelvic floor exercises which sometimes helps with relaxing. However, I feel that the tension of pelvic floor muscles is due to the pain in the vestibule..not the other way around. so I feel that if I am not addressing the underlying problem of the pain, the pelvic floor therapy will not help. Normally pelvic floor treatment is for patients that have vaginismus (or involuntary contraction of the muscles).
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OK here is an up to date version of what is going on with me and what I know about my vestibulodynia. I went to see Dr. Andrew Goldstein in Annapolis, Maryland. He is world renowned at being one of the best in female sexual disorders and I was tired of my doctor not listening to me. He does an extremely thorough evaluation to find out the cause of your vulvodynia. There are about 12 different causes so of course the treatments for each patient will vary. He told me that 75% of the people that walked into his office had vestibulodynia, and 70% of those 75% had it because of birth control pills. Especially the newer birth control pills like yasmin, orthotricyclin low, nuva ring, etc. The reason is because bc permanently alters you liver to produce more sex hormone binding globulin. SHBG attaches to the free testosterone in your body and estrogen. Your vestibule tissue needs adequate levels of testosterone and estrogen and contains those receptors in that tissue. When the tissue is not receiving those hormones it gets irritated and inflamed. This also explains why pain sometimes fluctuates throughout a woman's cycle. Your testosterone levels rise and fall too. I couldn’t believe the pill could do something like this because I haven't been on the pill for a year, but he said it didn't matter because there is research being done on how it can permanently alter how much SHBG your liver produces. Scary! A week later I got my lab results back for how much FREE testosterone was in my blood and I had less than half of what a normal female my age should have. I now have a testosterone and estrogen compound that he prescribed. I apply it to the Vestibule tissue and I can already see a difference. I encourage everyone to check out his site. www.cvvd.org and read everything you can!
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Hi, it doesn't say on the bottle how many grams I have but I apply a large pea size amount in the morning and at night and the bottle is supposed to last three months. It is also in a methylcellulose base. This is important because I origianally didn't go to Goldstein and had my gyno prescribe this(just like you) and she put it in a petroleum base which was extremely irratating. Make sure you rub it into the vestibule..and honestly I apply it more than twice a day. He told me that it takes awhile..I have been using it for 2 and a half months and I am only about 30% better..but he said after about 6 months of use I should almost be pain free. On the bottle it reads Estradial0.03%/Test 0.1% in Cell # 100
100 i think stands for the amount that is in there. Hope this helps
Adotfritz - all - thank you for sharing your stories. Often I feel as if I am the only one going through this. Diagnosis-wise, I have vulvodynia and vulvar vestibulitis. Mine started 6 years ago when I was 24. I was taking Yasmin birth control at the time (only for a few months) and from the beginning it made me feel "off". Other pills made me emotional and this one made me have NO emotion...but it was supposed to be better than the rest so I stayed on it. I started off getting UTI's 1x a month, was given Cipro at the dr. and then would get another UTI the next month. I kept getting them. But then it would feel like I was getting a UTI and I didn't have an infection. It also felt like I had a yeast/candida infection and I tried over-the-counter stuff but the burning wouldn't go away. I remember the first time I noticed the pain during sex, it almost felt like I had to urinate. Then it was just pain all the time...burning, raw and no infection showing up on tests. I was convinced for the longest time that I had an infection the doctors couldn't diagnose. I still wonder if that's possible. I went to urologists, gynocologist, uro-gyno's. One urologist did a cystoscopy and dilated my urethra (which, thanks to him, will never be the same)...no IC showing up in my bladder. Sex was so painful and no one had a clue. For a long time I just wanted to figure out the cause and heal, so I have resisted the estrogen creams or the oxalate diet. Maybe they would have helped, but I always wanted to know WHY. All of this started when I began dating my now-husband...I don't know how he puts up with it. I have also used the stim - that is the ONLY thing that has helped but like mentioned above, it helps sometimes and never completely. It will help part of the pain but not on the outside area. I found a urologist that diagnosed pelvic floor dysfunction but I have NEVER believed this to be the cause...hello I am in excruciating pain and yes, of course, my muscles will tense up. Of course it makes sense that less tension could help ease some of the pain. I never heard that info about the testosterone; this is fascinating to me because my general practioner a couple years ago did blood work and said that my testosterone was really low and he thought it could be a reaction to the pain and my negative libido. I really have to wonder what birth control has done to my body. I even went back on it, at one doctor's advice, thinking the regulation of my hormones would help get me better? I have recently started looking into treatment again. I was so sick of doctors and getting nowhere that I gave up for the past two years and just didn't go to any. I went to a new gyno who suggested I try gabapentin cream and I am considering it. Now I just want to manage the pain since I can't figure out the cause. Oh - I did try cystoprotek for my bladder a few years back. My bladder symptoms have improved and I can't say for sure what from, but I felt good about taking cystoprotek. I only took it for a few months. I have tried many holistic things like acupuncture, candida treatments (lots of those with diflucan, nystatin (pills and cream), grapefruit seed extract. I tried taking gabapentin pills but was starting law school at the time and was a space cadet. I stopped taking them completely so I don't know if that could have been helpful. I have also been "diagnosed" with IBS but that's such a blanket diagnosis because they don't know what's really wrong. I just have a constant pain in my abdomen and I don't know if it's the vulva symptoms or what. Thank you for sharing your insight. I am in the US and going to check out Dr. Goldstein - it sounds like it would be worth the trip. If anyone has questions (I have tried so many things) let me know and I can tell you about my experience. I am rambling a little now....thanks everyone!
Anon - I'm sorry to hear you're having such a rough time trying to find effective treatment for your condition, and for all the pain you're going through.
Did anyone else in your family suffer from this condition?
Honestly I would just go to Goldstein if you can. For me it was a seven hour drive but worth it...also they don't take commercial insurance so it is pricey. If you have checked out his website then you know that he really does find the CAUSE...I spent five years trying everything and everything failed because the gynos were just guessing and trying things. I had a donctor tell me that I also had IC because I had burning urination..i don't think tha was ever the case. Either way, Godstein helps patients with IC also. Also I was on Yasmin for about 4 years and he believes the birth control permanently altered my liver to produce more Sex hormone binding globulin..this is why I have less free testosterone. You should really look into this and contact him..I don't know of any other gynoe that thinks birth control is the culprit. My prescription is above. Hope this helps
Hello.
I can completely realate to you. I am on the verge of going insane. I began with a urine infection that took two tries of antibiotics to go away, then got diagnosed witha vaginal bacterial infection. This also took two tries to go away but to my suprise the burning remained. I am going on to month 3 and now feel an urgency to urinate, backpain and burning and there is no sign of a urine infection. My OB dosent think its Vulvodynia and dosent seem to see a problem after several tests. Before him I saw several Dr.s as well and they say its in my head and that I'm thinking about it too much.
There were 2 uterian fybroids found which I thought was the problem but th OB also said they are not big enough to give me problems like this. I'd like to see a Dr. that specializes in this and I'm still on the hunt for one. I live in los angeles, CA if anyone can recommend one. Thanks.