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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


getting pregnant and vulvodynia

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getting pregnant and vulvodynia

Post  londonlady on Mon Jul 02, 2012 8:35 pm

Hi Ladies,

Before I started getting V about a year and a half ago, I sadly lost a baby at 16 weeks. She was a surprise baby when I was 23 and had just started seeing someone, but we both wanted to keep her and were excited about the pregnancy, so it was a massive loss which has left me wanting to be a mum much earlier than I had thought before.

I often think about trying for another baby. Although it is not the right time financially at the moment, I hope that in a couple of years it will be something we will do.

However, at the moment the only thing which seems to help me is a relatively high dose of amytriptaline, which is not safe in pregnancy. I tried reducing it recently but the pain was too much. although I am hopeful about physiotherapy, I really worry that I won't ever be able to come off it and try for a baby.

I wondered what other people have done when faced with this and if anyone can share any positive stories about trying for a baby with vulvodynia.

I know I should try and focus on the here and now but it feels like a weight hanging over me sometimes!

thanks
xxx


londonlady

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Re: getting pregnant and vulvodynia

Post  Azraella on Wed Jul 11, 2012 9:28 pm

Hello,

I am so sorry to hear about your loss.

I am 27 years old 26 weeks pregnant and have had V for four years now, tried many treatments including surgery..twice. I have not found ONE thing that helps with the pain.

My partner and I have been together for 6 years and sense I got V we have sex very little so I am oddly lucky to have gotten pregnant.

I worry all the time that I will not be able to give 100% into being a mom because I am in constant pain...I am very excited and happy, don't get me wrong but it is hard being in so much pain all the time.

But if I can do it anyone can do it! So please never give up on your dreams of being a mommy because of V. Good luck to you when you do decide the time is right.

Also I have never tried anitripdylin (mspelled) I wonder if when I have the baby if it is something I should try? My pain is constant and unprovoked, it gets worse after sex(like the next morning) and it is a STRONG burning feeling. Is yours anything like that? Just asking because I might ask my Doctor if I can try this medication after pregnancy.

Azraella

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Re: getting pregnant and vulvodynia

Post  londonlady on Sat Jul 14, 2012 9:25 am

Hi Azraella,

Thanks for your message and congratulations on your pregnancy!

I'm sure it must be worrying thinking about being a mum and still being in pain, but I'm sure that you will do it! Pain can make me feel really anxious about not being able to do things but I am always surprising myself by doing those things anyway.

It could be worth trying Amitryptaline once the baby arrives (although I would think you probably can't mix it with breastfeeding, but I'm not sure). It has definitely helped me to live a more normal life with much less pain on a daily basis/when having sex.

It is actually an anti-depressant, but prescribed in lower dosages for pain relating to nerves (vulvodynia but also other types of chronic pain) which don't respond to other pain killers. You have to start it at a low dosage and then increase it slowly (i.e. each week) until you get to the dosage that blocks your pain.

It does have some side effects which I don't like: it can make you pretty drowsy and a bit foggy, and you get a dry mouth. some people also find it makes them put on weight, but I haven't had that, and have been taking it for about a year. You can't drink as well if you are taking it.

I found these side effects (especially feeling drowsy) were much worse when I first started taking it - but after about 6 weeks (which I know is a struggle!) they stopped affecting me so much and I could get on with my life almost normally. I take them at night so that I mostly sleep through the time they make me drowsy and just feel a bit more tired than usual in the day.

A physio also said that gabapentin could help - this is another drug which relates to nerve pain.

None of these pills are cures but they make the symptoms more manageable while I look for a way to tackle the problem.

Also, have you tried physiotherapy at all for your pelvic floor muscles? Mine is very tight with lots of trigger points (muscle knots) and I am seeing a women's health physiotherapist to learn how to relax it and essentially do some deep tissue massage to help.

Good luck - and take care in your pregnancy

xxxxx



londonlady

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