Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 Hi everyone this is a. I just wanted to tell all of you that I think I am finally getting better. I was so excited yesterday because my pain is now so much less. I am now going to a physical therapist that understands my problem. She thinks that if I stretch out my very tight muscles in my hips, buttocks, abdomen, lower back, and inner thighs it just might decrease my vulvar pain to no pain at all. She said sometimes when muscles around that area are too tight, never being allowed to relax, can radiate pain to other places such as the vagina and vulva. At first I was very skeptical of this theory but it seems to be working! I have also been doing kegel exercises everyday because the last time I saw my gyno, he said that my pelvic floor muscles were way too weak. At first when I did them it was very difficult to even contract them at all, it hurt very very much and made my burning pain much worse but now after doing them for a while they are much easier to do and my burning pain has diminished. I still have alittle pain, but no burning. I think that all this burning pain that I have been having constantly for 8 months now is caused by my weak pelvic floor muscles and extremely tight muscles surrounding the area around the pelvic floor muscles because I don't think you should have very weak muscles right next to extremely tight muscles, then they wouldn't work right. Well, that is my theory anyway. For the ladies who have vulvodynia and vestibulitis but aren't going through menopause and who show nothing wrong at all with a gyno exam I just want to tell you that you probably want to consider my theory and go to a physical therapist and do biofeedback or kegel exercises. Before all this happened I had never had any pain with intercourse, I had no pain at all down there! This is why it's makes sense that it's my muscles causing all of this, not my nerves!!!!!!!!! I think once I get my pelvic floor muscles back into shape and get those other muscles around the area that I've mentioned earlier, I will be pain free. Ladies I don't think you should be skeptical about biofeedback because I think it will help many of us out there, it wouldn't hurt to try it. I am so happy now because even though I'm not 100% cured yet I feel like I'm getting closer everyday. Now that I can't really feel the pain it will be much easier to work at getting better and being cured. I never really thought it was nerve damage because I never had gone through any trauma, so I think I'm on the right track. Oh, my burning pain used to increase when I would get aroused but now that doesn't happen any more, and I think my burning with urination is finally going away too. If I'm right about all this I will be the happiest women in the world! But it will take a couple of months or more before I will know for sure. I have to give my muscles some time to strengthen, relax, and heal. Working out at the gym also decreases my pain but I have to be careful with what I do. Oh, and I'm going to start going to yoga classes to help my body to relax more. I'm also going to go see a psychologist for my mother's recent death. I think this tragedy has shocked my body so much that it made my muscles go out of whack. And to think that I was going to consider surgery! NO WAY! That would have probably made me worse!!!!!!! I will never get surgery for this or even consider it! That's not my answer. I am so glad I went to another gyno for a second opinion. The gyno I have now said NO WAY! He said that it wouldn't do me any good. He said he didn't really know what was wrong with me exactly but he's the one who said that my pelvic floor muscles were very weak, too weak and told me to do some kegel exercises. I feel like he has saved my life! I feel like he has guided me in the right direction! I decided to go see a physical therapist on my own because I felt that if I have a muscle problem maybe they could help me. Anyways I know that this is very long but I just have one more thing to say. I'm going to see a vulvodynia specialist on Feb.25 in Rochester. His name is Dr. and Saunders who is in charge of the Hopkins Vulvodynia study referred me to him. When I see him, I am going to ask him to do three cultures of ureaplasma, mycoplasma, and yeast just so I can rule them out totally, then I going to have him do a colposcopy to make sure I don't have endometreosis, and have him do a vulvoscopy to rule out any skin conditions. I have had a biopsy done before showing only chronic inflammation but I want to make sure. Now if all these tests come back negative, I want to ask him where I can purchase a biofeedback unit that I can use at home. This will help me with my kegel exercises and the machine will make sure that I'm doing the exercises right. Well, I'll let you guys know how I'm doing from time to time and definitely get back to you after I go to this specialist. Hopefully all of this is caused by my muscles, that would be so wonderful. Sincerely, a (diagnosed with vulvodynia and vestibulitis but no one is really sure, that's just what these gynos think) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 I had a terrible reaction to Flagyl. I already had VVS and the dr said I needed to keep using the Flagyl for a bacterial infection (altho he did not do a test) & the burning would go away. Well, it only got worse and never went away. I kept inserting it when I felt I should not because I so desperately wanted to get better. Then this dr would not see me in emergency, just sent a note to my family dr to say there was nothing further he could do! Whew. I have a more sensitive, compassionate dr now - but still no help. Have tried every cortisone cream in the book; all made it worse. I just realize over & over with the posts that I am not alone. Sometimes it is hard to just carry on another day. Still, I keep trying - and hoping. Alice in Kamloops Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 It sounds like you may have found the answer that works for you! More power to you, a! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 Hi a and all, I saw Dr. when he was at s Hopkins and he's wonderful. I envy you. I'll always be thankful to him because he diagnosed my Vulvodynia and started me on the way to being relatively painfree. I hope he does the same for you (I'm sure he will). Health and happiness, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 I had an awful reaction to Flagyl too. It took a long time to get over it too. Be careful using that drug with VV. Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Dear Alice, I know how you feel. I asked my gyno for a referral and he said " what to a psychiatirst " I said No to vulvar specailist. Doctors..Grrrrr. Try taking Aveeno sitz baths for about 20 minutes day and nite and using vitamin A & D ointment. This is what helps me get thru the bad flareups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Sheri, Hi I was just curious what exactly did Dr. do to help you become relatively pain free? Have you had VV for very long? I know having it anytime feels like a long time! Please share with us whatever treatments he had to offer and what helped you and what didn't help. I am not sure but I think he may have been the doctor that spoke at the I.C. convention in 1987 about vulvodynia. I am glad that you are doing well. Thanks Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Sheri, This is a. I live in Lockport, NY and it's about 2 hours from Rochester. I was just wondering what Dr. did for you? What medication does he have you taking, if any? and what kinds of tests did he perform on you? You say that you're on your way to being pain free, how are you doing that? I'm very curious. a Quote Link to comment Share on other sites More sharing options...
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