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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


Post Full Vestibulectomy - 5 Years Later - Please Read

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Post Full Vestibulectomy - 5 Years Later - Please Read

Post  jen007 on Tue May 02, 2017 6:18 pm

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 surgery, I was 99% pain free... I say 99% because I still had some tightness here and there, but nothing my dilators couldn't help along. In October of 2016 that all changed. I went to sleep one night pain free & woke up the next with pain. It's never left me since. The pain is much different than what I had experienced before surgery. This didn't feel like vulvodynia to me. The pain moved around my urethra. I thought I must've had an infection or maybe even a reaction to some scented toilet paper... If only that were the case. It's had some variations over this past year, but mostly my symptoms are constant burning... like a thrush type of burn or UTI type burning. All inside my labia around the urethra. Sometimes it even burns to urinate. I can still enjoy sex & have orgasms, but there's times where it's impossible. The aftermath is also unpleasant. I feel deep stinging pain... my regular burning feeling times 10. It doesn't last long, but I'm out of commission sex wise for a few days to recover. Wearing tight clothes is painful, but I deal with it because I don't want to sacrifice my style... it's one of the things that makes me feel normal. I try to make myself look as good as possible with clothes & makeup to compensate for the awful pain I feel 24/7. I've tried so many things, but nothing seems to help me. At first my surgeon, who did my vestibulectomy, thought the pain stemmed from a Skenes Gland Cyst. He removed it and it changed nothing. I had to go thru the same recovery time as I did with my first surgery & paid all that money for no results. It was very upsetting. Then I tried various creams & medications as I did before my surgery. Even went back on amitriptyline & nortriptyline... neither helped at all. I can't use lidocaine gel to numb the pain because it burns too much... even if I mix it with lubricant gel... I tried it a couple of times & just decided to never use it again. The pain it caused wasn't worth it to me. I've gotten to the point where I had to stop seeing my gynecologist that has been with me throughout my entire journey. She has nothing left for me to try... and honestly she was just guessing with treatments. Antibiotics, medications, creams, therapies... doctor after doctor... nothing helps. I started seeing an infectious disease doctor. I wanted to see if there was some way I could've gotten some kind've new infection that on one has heard of or doesn't test enough for. She couldn't find anything wrong with me either. We did a bunch of blood work... no STDs or anything out of the ordinary. I also went to a urogynecologist to no avail. Currently the infectious disease doctor has me on Singulair for anti-inflammation. I've been on it for 2 months & haven't noticed anything drastic.

Here is a breakdown of my symptoms:

Constant burning pain around the urethra and labia area. Also, every once in awhile the pain escalates... at times I wonder if I have an infection, but I usually don't show anything when I get tested. The pain will last between 2-3 weeks & then I'll feel the regular burning pain until the next time it escalates.

I'm wondering if any of you have experienced something similar to this. I would love to hear recommendations. My gynecologist told me that our nerve endings can grow back after being removed & then travel to a different area. I never heard of anything like this before surgery. I didn't know nerves could grow back after being cut. Maybe I'm just one of the unlucky ones... but I feel like we never hear from women after surgery. We never get to know what happens years later. Who knows if they live a pain free life still. I was hesitant to post here again... it's taken me some time to realize I need to be a voice for women who suffer with this. No one deserves this. I hope that one day I can find relief... as well as all of you.

I hope to get to read some feedback from you ladies. Hope you're all managing as best as you can!

-Jen

jen007

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  fairlight10 on Tue May 02, 2017 8:52 pm

Sorry to hear you are still suffering. Have you considered trying a low oxalate diet? I have had some stinging this past week. Especially after urination. I looked at what I have consumed recently and there are a lot of high oxalate foods. For instance, spinach, peanut butter,beetroot,too much coffee and chocolate. It has calmed down now, but was starting to remind me of the old days. I also used to make sure I was dressed nicely, hair and make up just so. Did not know why I did this but I was probably compensating or trying to disguise what was going on with me. I know you can also neutralise the acidity of your urine with calcium citrate, calcium carbonate and potassium citrate. Hope this can help.

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  sarahjane1332343 on Sat May 06, 2017 5:59 pm

Hi. Sorry to hear about your suffering, I truly hope your pain goes away soon. I'm just wondering did you receive your surgery in the UK and if so what hospital / doctor?

Thanks,

Sarah

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  flick001 on Mon May 22, 2017 10:12 am

Hi,

To me the deep burning and stinging connected with the urethra sounds like Interstitial Cystitis - have you seen a urologist and been tested for this?

I hope you find out what it is and get some relief!

flick001

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