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. (name removed) - 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!
(Physician name removed by EmpowHER Moderator)
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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. (name removed) - 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!
April 24, 2009 - 6:34pm(Physician name removed by EmpowHER Moderator)
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