Please help - undiagnosed severe genital pain

[Undiagnosed23]

Hello I am a 23 year old female otherwise healthy except for my mysterious condition.  I have been experiencing severe genital burning, discharge and bladder pain for some time now.  The pain is severe and has caused me to miss out on alot of things in life and even (I believe) resulted in a severe anxiety disorder.  I have been to my famly doctor so many times and he tested me for any and everything under the sun with no luck.  I have also visited a specialist gynocologist who also tested for everything and the only thing left she thinks it could be is intersistational cystitis (she thinks probably not) which SOME of my symptoms match BUT the strange thing is that this condition is not contagious and my boyfriend of two years has now been experiencing the same symptoms I have and his doctor said that it is due to leiken plantis which is also "not contagious" BUT we have the exact same symptoms which started when we began sexual intimacy.  Please help because I am tired of running around looking for answers and do not want to endure painful bladder procedures to diagnose intercystational cystistis when the doctors said theyre not even sure that's what it is but they just don't know,  Again our full symptom list is as follows: extreme pain during intercourse, occasional severe burning pain in the genital and bladder area during urination, extreme itching and dryness, discharge, I have burning pain in my upper abdomen from time to time that feels like an ulcer but I tested negative for, redness in the genital area.  Please help us we need some answers.

[tdk451]

Maybe your boyfriend is suffering sympathy pains?

Here is a supportgroup in the US (Robert Wood johnson University Hospital) for people with vulvodynia: http://www.rwjuh.edu/events/event.aspx?eventid=80

If you drop them a note, they may be able to advise the best type of doctor to see.

I suffered from burning vulva syndrome and I was lucky that my GP (general practioner) was able to diagnose it without me having to go through the grist of seeing specialist after specialist.  He did suggest that I might want to visit a dermatologist who specialised in this.  In the end I didn't go because when I went to see a gynaecologist (on another matter) I mentioned it and she recommended that I apply sorbolene with 10% glycerine.  It worked for me; but I do not know that it will work for you.

The gynae said that many women suffered from the condition and were too embarrassed to see their GP.

Good luck.

PS  I was being a bit flippant about your boyfriend!  I don't know why he is suffering too.

[Undiagnosed23]

Thank you so much...it looks like my symptoms may match.  I am just wondering about my boyfriend of 2 years who has the same symptoms as me?? I am going to try to get another referral to a different gyncologist from somewhere..the doctors I have seen have basically given up on trying to diagnose me.  

[tdk451]

Have you considered burning vulva syndrome (vulvodynia)?

Try this link:  http://psyc.queensu.ca/faculty/pukall/whatisvulvodynia.htm and see if your symptoms match.

Hope this helps...

[Undiagnosed23]

Additional information:

I have severe menstrual cycles with cramps that resemble contractions (I have to take pain medication constantly to help) and severe bleeding.  I miscarrried once in the first trimester at age 18.  I do not have any children.

[Undiagnosed23]

We also have severe itching, dryness and redness nasally and he also often has nosebleeds if that is related.

-Poster