Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 Hi Everyone - I'm new to this group, my name is beth - I am now 26 years old and have had vulvodynia for 12 years but was only diagnosed last year. The disorder has caused extreme physical and mental stress in my life and it was a " blessing " to finally have a name for my pain. Throughout college and after I visited MANY doctors and told them of my " burning " menstrual cycles and unbearably painful sex. I got a variety of responses but most just told me that I needed to use more lubrication during sex or that I had some hang-up about sex and needed counselling. It was so frustrating! I knew there was something physically wrong with me. Finally I went to a doctor who had heard of this disorder and referred me to an allergist and also, Dr. Melmed. The allergist was completely unhelpful (I know my skin is sensitive and that I have some food allergies) - Dr. Melmed had a patient several years ago who developed this disorder after the birth of a child and since then he has been treating women with this condition. On my first exam he did a culposcopy (sp?) and had it on a monitor so I could see what was happening - I remember it was during my period and I was wearing a tampon and I saw a large spot of BRIGHT red and I thought " Oh God, how embarrassing - I am leaking through " . It wasn't blood - it was the actual color of my tissue! I have tried a low ox diet and have not notice much improvement, I have just started taking Citracel... I don't know if that will help. In the past I have tried steroid creme and it seemed to aggravate the condition. I am willing to try just about anything to be able to have sex without having to go into the bathroom after for an hour to soak and cry. I have a wonderful boyfriend who is very supportive... he is willing to please me in " other ways " and NEVER pressures me. He is in Viagra so we are a good couple *grin*. I hate wearing jeans (thank goodness I rarely do), I can't wear pads just tampons (once I get them in I'm okay), I always feel " hot " and itchy and it is always on my mind... during work, during school, even during activities like skiing. I know my symptoms are not a bad as some of yours and I am thankful. I have never known an adult life without physical discomfort and pain but I am working toward it! I have had stretches of several months with little or no pain but I have no way to predict when that will happen. At this time last year I was feeling fairly good but the last 5 months (and currently) it has been really bad! Thanks for listening (by the way, I only access the internet during the week), beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 I would like to participate in your research on vulvodynia. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 <<I have tried a low ox diet and have not notice much improvement, I have just started taking Citracel... I don't know if that will help.>> I am not sure if meant to write 'Citracel' or not? Correct me if I am wrong, but I believe this to be a stool softener. Is this what one should take while on the low-oxalate diet or is it Calcium Citrate supplements with a similar name? B-C, dx in 7, POC, IC mailto: ZipSkpChia@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 1999 Report Share Posted January 23, 1999 Citrical is the calcium pill for low oxalate diets. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 1999 Report Share Posted January 25, 1999 Oops... I meant to Citracal (calcium citrate) beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2012 Report Share Posted September 1, 2012 Dear Ladies, This is Aimee DuBois, from Central Michigan University. As many of you may remember, I posted a message last fall asking if anyone would be interested in participating in my research for my thesis. Since then, many new members have joined and I wanted to post the message again. I am a vulvodynia patient who is also a graduate student in the communication department at CMU. I am currently working on my thesis which is looking at how couples cope when things such as vulvodynia, IC, chronic illness, etc enter into their lives. This research is important because it is a highly underresearched topic and would provide the many sufferers of such disorders with more literature to help them through the healing process. I am planning to do interviews on-line with people who would like to participate. I am also wanting to interviw couples as well as individuals, so if your partner is interested, it would greatly help broaden the scope of my research. Because I am doing interviews on line, I have been searching for a venue that would provide a means for quick responses with privacy for anonymity. So far, the best I can find is America On Line Instant Message Service. For those with AOL, you already have access. For those that don't, you can download the instant message service at no charge. I am planning on starting interviews soon and would like to guage how many of you are interested and if you would be willing to get access to AOL instant message service if I told you how to do it. For those that have already responded to this request, please tell me if you would be willing to get the service too. I appreciate any responses as soon as possible. I value your willingness to particpate and would be happy to share my results with any who participate. Hopefully, I'll get published too. Please contact me for more information, aimee.d.dubois@... Thank you to all and stay healthy! Aimee DuBois Quote Link to comment Share on other sites More sharing options...
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