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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Any new ideas for me?

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Any new ideas for me?

Post  leitheij on Mon Aug 25, 2014 10:30 pm

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)
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?


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Re: Any new ideas for me?

Post  sailor_moon on Sat Sep 27, 2014 2:47 am


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?

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Re: Any new ideas for me?

Post  leitheij on Mon Oct 06, 2014 8:34 pm

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.


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Re: Any new ideas for me?

Post  sailor_moon on Mon Oct 06, 2014 8:49 pm

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?


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