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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Diagnosed on Friday

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Diagnosed on Friday

Post  Sesquipedaisy on Mon Sep 12, 2016 2:54 pm

Hi, everyone,

I'm twenty-five years old, like to have fun but am very mature for my age (I'm two years out from getting my Ph.D.), and previously was very proud to just have non-monogamous casual sex relationships--but I suspect that last part will change now.

It's been a difficult summer. My first gynecologist had me on topical and oral diflucan for a yeast infection I didn't have and the antibiotics ampicillin, doxycycline, and ciprofloxacin for other infections I didn't have.

On Friday I got a second opinion and before looking at me the doctor said my symptoms didn't sound like an infection, and after performing the Q-tip test he said he thinks I have vulvar vestibulitis. He printed out a bunch of research, most of the 2000s, for me to look over and also a pamphlet for a support group. I've started on Montelukast (aka, singulair), which acts as a mast cell inhibitor.

After doing my own research, the description that fits best is secondary provoked vestibulodynia presenting with moderate erythema, dyspareunia, frequent urination, urgent urination, and a feeling of incomplete emptying with urination. In other words, I have had pain-free penetration, but sometimes penetration or contact with my genitals sets off a pain episode that results in a burning feeling, redness, swelling, painful penetration, and urinary symptoms.

I realized after getting the diagnose that the symptoms I'd been experiencing this summer, which I thought were an infection, were similar to symptoms I experienced last year. In 2015, after having sex that was too rough with a partner who was too big for too long, I was in pain for months and no doctor could figure out why. It eventually just went away on its own. I didn't notice that my pain episode this time began immediately after sex (I'd had sex in May and then my symptoms became apparent in June), but it does very much feel like the same thing all over again.

I want to get more tests done to rule out or confirm a hormonal imbalance (my symptoms get worse just before and at the beginning of my period) and interstitial cystitis (IC) (because of the urinary component). I recognize that I could have these issues in addition to vestibulodynia, as women who have it also frequently have at least one other chronic condition (comorbidity).

Regarding the treatment options my doctor suggestions, it looks like recent research has not confirmed their efficacy, but he said that I will be in charge of my treatment and appreciates that I do my own research into my conditions. I'm definitely open to surgery, although he views that as a last resort.

So I just wanted to introduce myself. I'm sure I'll be on here a lot.


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Re: Diagnosed on Friday

Post  emalita on Mon Sep 12, 2016 5:27 pm

Hi Sesquipedaisy!

I'm so sorry to hear that you're having to go through this, and I hope with time you are able to find lasting relief Very Happy


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Re: Diagnosed on Friday

Post  Sesquipedaisy on Mon Sep 12, 2016 8:18 pm

emalita wrote:Hi Sesquipedaisy!

I'm so sorry to hear that you're having to go through this, and I hope with time you are able to find lasting relief Very Happy

That will be the goal of treatment, but I know that this may last forever.

I've found that different people have different approaches to dealing with a diagnosis like this. When I entered my twenties, my mom was diagnosed with a rare chronic, degenerative neuromuscular disease, of which there are two types: one that can be cured and one that can't be.

Her doctor told her that she had the kind that couldn't be cured, and I drove with her to Mayo Clinic to get a second opinion. For a lot of the drive up there she was talking about how her doctor might not know what he was talking about and she had been praying to God about it and she believed that the doctors at Mayo would give her better news.

And the whole time I wished she would stop, because, like I said, I'd rather assume the worst and be surprised than hope for the best and be disappointed.

Mayo did indeed confirm that her disease is incurable, and I won't be surprised if my condition isn't either. And accepting that is part of how I cope.


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Re: Diagnosed on Friday

Post  emalita on Mon Sep 12, 2016 11:18 pm

I agree that sometimes assuming the worst is better than wishing for the best, but just know that with vulvovaginal issues beyond simple yeast and BV, doctors know VERY little. Most I've found are quick to blame the pain on overactive nerves, which, in my opinion, seems to be the knee jerk response of specialists who don't know how to look any further.

I've seen over 10 doctors for my pain, and I've had varying responses. Some were convinced it was a tough infection, some blamed nerves, some blamed imbalanced flora, some blamed lack of estrogen, etc. It's all a guessing game at this point, and I believe that's because the cause of vulvodynia varies as much as each individual woman.

Anyway, what I'm trying to say is don't give up all hope of being rid of your pain. Don't rely on a doctor to diagnose or heal you. If I would have, I wouldn't be making the huge improvements that I am today (no matter how slowly Wink ).


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Re: Diagnosed on Friday

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