Any new ideas for me?

Hello..
My name is Jill. I'm 38 years old and live in Michigan and I have been suffering from vulvar burning for 1 year.. Here is my brief history..

8/2013 - Had a yeast infection that didn't clear up with diflucan. Also found out I had HPV both the low and high risk. I was also having unprotected sex with a boyfriend at the time who had genital herpes. I tested for herpes 6 weeks after last contact with him and was negative.

9/2013 - 12 hours after sex my vulva would burn like crazy for about 6 hours and then reside. I started going to GYNO for a colposcopy (for abnormal pap and finding out I had HPV). I stopped having sex and ended relationship with the guy. It started to burn a little while I peed but then would reside.

9/2013 - 12/2013 - My GYNO tried me on: Flagyll, vaginal clindamycin, Doxycyline, and Cipro. My symptoms were burning that lasted than just right after burning, lots of discharge and tons of white blood cells yet under a microscope no real bacteria was found.

Went to about 6 more GYNO's that were no help.

1/2014 - 3/2014 - Started pelvic floor therapy and had about 80% reduction in pain. I still couldn't use tampons but I could occasionally wear tight jeans for a half a day without too much burning.

5/2014 - Got into a new relationship and started having sex. After the 3rd time of sex the burning started back with a vengeance and has not gone away. I once again tried physical therapy but after 2 1/2 months I have not had much relief.

Other things I've tried:
vaginal valium
Using dilators at home
Stretches at home
going for walks even when it burns
various anti-depressants - can't tolerate cymbalta, prozac, zoloft
anti-seizure - lyrica (caused severe constipation). I'm currently on neurontin
Motrin - 800 mg
Flexeril (muscle relaxer)
Savella
Ice/heat
testosterone compounded cream on vulva

I have not had sex for 2 weeks and I'm still having terrible symptoms but now it burns all through the perineal area even after a bowel movement. It burns in the labia minora and also as I'm peeing (through the urethra). I recently just had sex (after using dilators to stretch) and that was two days ago and the burning is so horrible.

I am having a colposcopy tomorrow to check up on the HPV. I was also tested with yeast from an Infectious disease doctor who attempted to grow out a culture for a week to see if it was a resistant form of yeast which it wasn't.

I'm having trigger point injections performed by an anesthesiologist on September 30th - possibly in the prudendal nerve to see if it at least helps the burning after a bowel movement.

I find that when it is my period I have some reduction in symptoms but it could be from the massive amounts of ibuprofen I'm taking.

If anyone has any other suggestions that I can bring up to the doc?

Hi,

I so feel for you. I have been dealing with this for the past year and a half, and am only just starting to get somewhere after going through 12 doctors to finally find a decent one.

My doctor has just started doing off-the-wall hormone testing on me. I just got tested for something that most doctors do not test for. The hormone is called AMH...here in Australia it cost me $60 because it is a special test. The normal AMH hormone level is 30....mine are 129!!!!!!!!!! Apparently it can cause vulva issues.

The heightened level of AMH is EXTREMELY rare, my GP has never seen it in the whole 20 years he has been a doctor.

I am having other tests done, like a blood test every week, day 7,14,21 and 28 of my cycle to see what my hormone levels are doing from week to week [my periods are extremely irregular].

AMH levels are only really heightened when there is an overload/dominance of a particular hormone, it is usually only seen in women who are on fertility drugs or have Polycystic Ovaries. I have been off birth control for 9 months!

I am yet to get my other results back so I can't confirm what the issue is.

But I would suggest getting your AMH levels tested and getting a full hormone profile [blood test every week of the month] to see what your hormones are doing.

Do you have any other symptoms?

My symptoms get worse leading up to my period, if I dont get my period its worse. I get slight relief when they finally come.

Have you seen a vulva specialist?

Thanks! I thought this site would notify me of responses but I realized I have to keep checking.

That's interesting about your AMH levels. I did have bloodwork done where they tested for my hormones. My free testosterone was a little low so they prescribed me a compounded testosterone oil but it didn't help me at all.

I have seen a vulva specialist but they just offer anti-convulsants, anti-depressants or lidocaine cream. I keep trying to find answers. I had to quit one of my two part time jobs in the past week and my boyfriend and I broke up over this. I miss him terribly but I know I have to get better somehow. I just don't know what else to do.

I know a friends mum who had low free testosterone and had a form of Vulvodynia and they had to give her testosterone injections to fix her problem. Her symptoms completely went away after a few injections. And something was wrong with her estrogen too.

Hmmm if that has shown up in your tests it may have something to do with it. Did you get a blood test every week over a cycle?

I have almost lost my job over this shit. My boss abused me (because I have been sick vomiting, nausea, fatigue, double vision ect) and said " If you are sick you shouldn't be working! I need fit healthy staff, not sick staff", and has since then tripled my work load and told me if I can't handle the pressure than I should leave. Easier said than done when I have a mortgage to pay for and my husband doesn't earn "big money". So here I am, stressed 24/7 because of my symptoms and this ridiculous workload which I get paid minimum wage for. It's doing my head in. I have terrible anxiety because of it. With work problems comes financial fears.

My husband is super supportive, he has a really bad back so he can't have sex all the time anyway coz he is in too much pain. And he has a low sex drive because of the pain so I guess I got lucky. Either way, even if he did leave me I figure if that was the case he wouldn't be worth it if he did, if his dick had a problem I wouldn't leave him! I figure either way, my health needs to be first priority. I need to be selfish. I need to focus on finding a cure for myself.

I know the emotional bullshit that goes with all this. It sucks.

I'd ask for a hormone profile, testing every week, seeing as your testosterone levels were a bit low. You may have lowered or dominant estrogen too. Are your periods regular? Are you on birth control?