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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


Vulvodynia?

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Vulvodynia?

Post  acidfairyy on Mon Jul 11, 2011 5:02 pm

Hi all, I'm Nikki, 23 and from Warwickshire in the UK.

A couple of months ago I got my first ever UTI and ever since then I have had problems with feeling sore 'down there'. At first I thought it was another UTI, but it wasn't. Then I thought it was thrush, but it wasn't.

Three weeks ago I went to my GP who had a look and took some swabs. All the swabs came back normal. She said it looked red down there but she did say I have some small white spots in a line which she seemed quite perplexed about. I have wondered if I might have lichen sclerosus instead of vulvodynia, but my symptoms seem to fit vulvodynia more.

Anyhoo, she gave me some Dermovate and some Epaderm to use as a soap substitute. It seemed to be working, then it stopped. Then it started working again... but currently it is not working.

My symptoms are an almost constant feeling of soreness, and it tends to be triggered by getting hot and sweaty, going for a wee, or sitting on a hard surface (not ideal as my Saturday job has me sitting on a stool; I might take a cushion in). I sometimes got itchiness but that's pretty rare.

I have a follow up appointment with my doctor next Tuesday (19th) and she said if things haven't worked she will send me to a vulvar specialist. She is a brilliant doctor and she said the specialist is great too, so I am hoping I will get a diagnosis, just not looking forward to the inevitable long NHS waiting list!

So, does it sound like vulvodynia? I can't think what else it can be aside from lichen sclerosus, but I will definitely tell her I want this referral. It gets me down sometimes so I'm trying to stay positive, but I've only had it since April and I can't imagine living with this forever. Then again, there are worse things in life!

Nikki x

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Re: Vulvodynia?

Post  Sebby (Admin) on Tue Jul 12, 2011 6:01 am


Hi Nikki and welcome to the forum

Vulvodynia basically means 'vulval pain' and is a description of a set of symptoms rather than a diagnosis.

"Chronic itching, burning & pain that causes physical, sexual and psychological distress" - from The Vulvodynia Survival Guide (Glazer & Rodke)

Causes can vary so even if you do have it you need to research and try different treatments.

It sounds like a good idea to go to a Vulval Clinic, gynea and dermotology if you can. Hopefully the one your GP knows will be great, but here is the link to the list of Vulval Clinic's in the Uk if you need it

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics#1424

The website has changed a bit so you do need to search for your area.

I have constant soreness too and its triggered by anything touching the area, sitting etc. I am trying the Pelvic Floor theory at the moment. Bascially that an unstable and tense pelvic floor prevents the vulvar area from healing and being healthy (by a release of certain chemicals and prevention of proper blood supply to the area)

I do suggest getting yourself a copy of 'The Vulvodynia Survival Guide' as it explains a few theories etc and is a good all round introduction to the condition.

So get yourself to a clinic and dont give up, you are already way ahead than many women who have rubbish GPs! Hopefully a good treatment plan can be drawn up asap!


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