Constant disappointment at Doctor's office

I don't know why I keep going to the doctor's office hoping that some new doctor will give me a treatment that works. I am constantly disappointed. I can't tolerate most if not all anti-depressants (whether it's a tricyclic anti-depressant, SSRI or SNRI) and many anti-convulsant's I can't tolerate. The burning in my vulva started about 14 months ago and was triggered by a yeast infection and sexual activity. I remember thinking it was strange that I was burning badly after sex. At the time it would subside eventually. I quickly ended my relationship. And two months later it just came on suddenly unprovoked by starting a new job. I did pelvic floor therapy which helped. Spring of this year my pain was down to about a 1-2 out of 10. I all just about forget about Vulvodynia until I got into a new relationship. Sex kicked it off. That was 4.5 month ago and it has been mostly unprovoked since. This time pelvic floor therapy didn't help. I have tried all kinds of creams. I have tried oral medications and trigger point injections into the prudendal nerve but nothing has worked.

I am told I now need to fly out to Washington D.C. to see Dr. Andrew Goldstein. It is an hour flight. I just can't believe that I live in a major metropolitan city (Detroit) and there isn't one doctor that can help me. I feel humiliated. My boyfriend and I broke up a few weeks ago over this and I had to quit one of my part time jobs. I also suffer from chronic head pain which is mostly under control unless I cry...which of course I' doing a lot of that lately. I would love to just die. I keep trying and trying and trying.. and nothing gives. I am looking for a new job that will not aggravate the V. The neurologist I see for my head pain thinks that both my head an V pain are Central nervous system related.. so essentially the pain originates in my brain.

I'm sorry for venting. I just wish people would see me not for all my failures especially surrounding this but for how hard I keep trying to make things better. I just don't know what to do anymore.

Oh I know how you feel. I am onto doctor number 12 or 13...I have honestly fucking lost count.

I hate it...going in to see a new doctor and having your hopes up.. and then it all comes tumbling down when the doctor is clueless. Its a big kick in the guts...or on this case, a big kick in the snatch!! Lol sorry...gotta try n keep a sense of humour with this issue.

I am finally seeing a doctor who has done a rare hormone test not many doctors test for... it has come back with a result...my hormone levels are terribly wrong! !! I go back to him for the full result on Monday and don't know what to expect.

Hope you are coping ok!! What is the next step in your treatment?

Have you seen a proper vulva specialist?

I have seen a Vulva Specialist (Or so I think I have). The Vulva Specialist told me all her ideas but none of them really helped.
I have had two Gynecologists suggest possible Desquamative Inflammatory Vaginitis because of all of the discharge but I'm just not sure. I am also getting what feels like stabbing pains in my urethra especially after I pee and bowel movements.

I hope you get some answers from your appointment on Monday regarding the hormone test!

I'm also very hard on myself because this all started when I was dating a guy last summer (2013). We weren't careful sometimes and I found out I had HPV and I also got a yeast infection. I know it's not something that he purposefully did. But I keep blaming myself.. If only I had broken up with him earlier and maybe the sequence of events wouldn't have happened.

And, I miss my most recent ex. We started dating in may 2014 and then a month later the V issue got triggered again and has been with me ever since June. I tried to hide it as best I could from him all the while searching for answers. In september I started telling him a little more about what was going on because the burning pain just kept getting worse. The pain kept me from being able to stay over his house as much as I could. He started acting differently. We could barely have intercourse. I know there is oral sex and everything but honestly, this condition makes you not want to do anything. I ended the relationship because I just felt that he was just not happy. I kept trying to talk to him but he would shut down. I miss him so much. But, I'm just too embarassed to call him. I tried to overcompensate by doing nice things for him during our dating.. bringing his dog treats.. cooking things for him..etc. Even now, Whenever the phone rings.. or I get a text.. I just keep thinking.. maybe it's him texting me to tell me that I was enough for him the way I was. That even if I have this condition for the rest of my life that he will still support me. I know I have to stop thinking about him and move on I'm just so angry.... I go to so much counselling - it's just not working. I'm so plagued by if only I had done things differently in my life maybe I wouldn't be dealing with this.

Hmmm.... Have you seen a Uregynocologist?  Sounds like if it's the urethral area a Uregyno might be the way to go?

I totally get what you mean about this condition making you "not want to do anything". I feel the exact same way. Oral sex feels like a chore. I'm married and my husband is super supportive and understanding.  He has degenerative discs in his back as his own health issue so he knows what it's like being in constant discomfort.  His back is so bad he can't have sex all the time anyway. I have tried to push my husband away so many times because of this thing...but he keeps coming back, says he will never give up on me. He must really love me huh? I'm very lucky.

I can't really offer much advice in the Ex department. the only thing I can say is try and focus on yourself, try and get yourself into the best frame of mind you possibily can. Make yourself and your health your first priority.

I went to a so-called vulva specialist who was supposedly one of the best in Australia. ..and she was useless. Had no idea n told me I needed antidepressants and councilling and shipped me out the door.


Don't give up. I myself will never give up. I believe somewhere,  the right doctor will know something. I will never give up because living in constant discomfort and misery is not my idea of living. I Can't and I won't live with this forever...or I'll die trying to rid myself of it. though it feels like it, this shit isn't caused by nothing, SOMETHING has to be causing it. It is just finding the cause that is the hard part.

Another thing is try to find a specialist who has travelled and practiced around the world. More experience than  your average Gyne. Different countries have different ways of doing things and have studied differently.

If you haven't tried a Uregynocologist,  that may be your next step? OR....A really goid naturopath who specialises in womens health?

Please hang in there. Lol mind you, easy for me to say all this, I'll probably get in to see this doctor today, and get no answer (as usual) and come out a crying mess.

DIV is usually treated with antibiotics. ..Doxycycline if I remember correctly.  Have they tried you on that?

Sailor_Moon -

Thank you for your words of encouragement and advice. I will look into going to a Urogynecologist. I think that's a good idea. I want to keep looking for answers, too. Everytime I feel my mood go down when I think about this I need to try and do something else to lift myself out of that funk.

I know I can't even think about dating for a long long time. It's just weird to think that a man would still want to date me when I can't have sex. I'm happy that your husband is so understanding. It's encouraging to know that there are still decent guys out there that will love us anyway.