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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 19

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: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

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 …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

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 …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


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.

Sesquipedaisy

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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

emalita

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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.

Sesquipedaisy

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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 ).

emalita

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Re: Diagnosed on Friday

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