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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 …

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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: 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


Emotional mess...

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Emotional mess...

Post  KLynn on Thu Jun 14, 2012 10:26 pm

I've been an emotional mess since finding out I have vaginismus and vulvodynia. I've struggled my entire life with weight, which was hard to begin with, but then found out at 17 that I had ovarian cysts, then I developed hair in places most women don't grow hair, I suffer from bartholin cysts as well, and about a month ago was diagnose with vulvodynia and vaginismus. I know these things are manageable but having one after the other has made me an emotional wreck. I have a FANTASTIC boyfriend who is so supportive, but all of these things make me feel like a failure as a woman. Any advice on how to handle these things would be GREATLY appreciated.

For the vulvodynia I manage it by washing with cool water and no soap as well as wearing cotton underwear, but any other tips would be helpful. Its mostly manageable, but sometimes it can be quite painful.

Thank you for any advice you can give me.

KLynn

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Re: Emotional mess...

Post  ButterflyLiz on Mon Jun 18, 2012 10:07 pm

Hi KLynn,

Not really sure what to say but just wanted to reply to you and say you’re not alone. It’s so hard to deal with all this when you’re young, especially as there’s so little info and support out there. It opened my eyes to see how many people actually suffer with this.. on here, in person at a VPS event and in recent research (around 25% of women will suffer at some point). I wish people talked about it more then we might not have all these emotional issues to deal with on top of the actual pain itself.

You’re totally not a failure, anyone who can put up with this stuff has to be a pretty strong person. Don’t forget there’s always therapy, if you think that might be of help. Over the years I’ve basically had to give up being embarrassed / feeling guilty about the condition cos I need all of my energy to focus on getting better.

Have the docs suggested any further treatment for the vulvodynia? The usual route is amitryptiline or gabapentin / pregabalin. You can also get numbing gels / creams which help some people (lidocaine – if you’re in the UK you can buy vagisil over the counter). Also, it’s not glamorous but ice packs – I use frozen peas in a freezer bag down there (you’re meant to wrap it in a towel or something first). Go carefully to start with until you’re sure helps rather than hinders! We’re all different.

Liz x
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Re: Emotional mess...

Post  bluekangeroo on Tue Jun 19, 2012 10:11 am

Hey KLynn,

Don't worry - we all totally understand what you are going through on here. You are not alone and you are not a failure as a woman.

I often feel awful about my poor patient hubby - he has v high libido and mine has totally packed its bags and gone since this thing started. We've not made love in ages. But there are other things you can do to be close.

I feel like a crap mother quite often too, I have a 6 and 3 year old and often just can't do all the things for them that I want to, kick a ball around with them, play games outside, ride bikes... I feel so utterly pathetic when they ask me to do something for them and I just don't want to move.

It's a horrible horrible condition and so misunderstood. but I am really hopeful there is an answer out there somewhere... we just need to be tenacious and find it!

Find yourself a really good specialist who knows about vulva pain and get a treatment plan put together so that you feel empowered that you are doing something about it and you are not going to take this lying down (ok you might actually want to do a lot of lying down as that might ease the pain, but you know...metaphorically speaking!)

Take care

A

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Re: Emotional mess...

Post  riv on Fri Jun 22, 2012 10:40 pm

Hey Klynn

You really have had a run of it haven't you. No wonder you are feeling crap. I know how you feel and Im sure a lot of the other women here do. I got diagnosed with endometriosis and a chocolate cyst at the same time as I was told I had vulvodynia and eczema in my vulva (just to add insult to injury). I realise now it has been going on for years (around 20) and now I am tackling one thing at a time and each time I take control of one aspect I feel more in charge to take control of the next one.

I have had the support of a very good gynaecologist for my womb which has taken me a year to get under control. I think this was probably the starting point for feeling like I could then tackle everything else - but slowly.

Now I am working on tackling my beard with fortnightly trips to the beautician for electrolysis. Next I will be using IPL to get rid of my moustache both of which I have had for 8 years and have had the power to reduce me to tears in shops with harsh over head lighting and big shiny mirrors that suddenly alert me to the goatee I thought I had tweezered away. The rest of my body hair (which is unruly, wiry and mannish to say the least from the endo and cyst) is being dealt with a bit at a time as I can afford to treat it. I quite like dragging it out this way as its also drags out the sense of satisfaction I get each time I beat another patch of hair! I do have a friend with PCOS who saved up and had virtually her whole body lasered as she was so sick of her cyst induced hair - it was pricey but she is very pleased she did it as it seems to have worked really well for her. we are both in our late 30's so it was something we had both dealt with for a long time and decided that we had finally had enough! I would say its even worth saving up for over a couple of years - I prefer spending money on my hair removal than going on a holiday this year and next if necessary


Now I am getting this sorted I am now looking at my V and trying one treatment at a time - firstly with physio - which you might want to investigate especially for your vaginismus - not sure how it would if your B Cysts are causing you problems when you go for a session - you might want to wait until those are in a good situation before trying physio

I also had Cognitive Behavoural Therapy for depression about 7 years ago which I would highly recommend - its nice to talk to someone neutral and the therapist will tell you that you have every right to feel shoddy as you have had a load of horrible things happen. They then help you to find coping mechanisms for when things go wrong so its not so overwhelming (because getting bad news - especially a run of it - is VERY overwhelming and tiring). If you are not in the UK and have to pay for treatment look for a vulvodynia pain support group - there may well be one near you - and that can be really helpful to meet other people with the condition and have a good moan

I would say that you might want to start with reducing your pain - I found that once my pain had been reduced from the endo I felt physically more capable and in turn emotionally stronger. being in pain is so tiring - it exhausts you and should not be underrestimated in how run down you can end up feeling when hurting all the time. so as the others have said get referred - a gynae for your cysts and seeing what can be done to manage those and make sure your hormones are dealt with, and a dermatologist or gynae who runs a speciaist vulva clinic. And dont be afraid to change speciaist - if you dont like your doctor ask to be referred somewhere else (there are some fantastic doctors out there but there are also a few naff ones). Dont just rely on a GP to help - they can be great as a first point of call but you need someone who really knows their stuff. Read some of the literature out there too - I am reading The Vulvodynia Survival Guide which so far is proving very informative

No one fails at being a woman. Being a woman is troublesome as we seem to have bodies that can go wrong in so many ways. We have wombs that are temperamental and our hormones make us carry excess weight and cry at innapropriate times. I do not know a single woman who does not have a female orientated medical condition (endo, PCOS, fertility issues, vulvodynia) you just find that these things aren't discussed openly. That's why these forums are so great

I really wish you luck on starting to find some answers and treatments that work

Riv x

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