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

Fri May 27, 2016 6:50 am by Lucci


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


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

Hello, just introducing myself

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Hello, just introducing myself

Post  Steff8 on Wed Jul 13, 2011 3:13 pm

Hi, I am new here. I live in the U.K. but was born and raised in the U.S (married to a Brit). I have had v.vestibulitis for around 8 yrs now (ugh). I only have pain with penetration. I had a normal (healthy)sex life up until then. I am on amitriptyline and taking calcium citrate. I think the calcium has helped somewhat and am considering coming off of the amitriptyline to see how that feels without it. I have had very little helpful treatment from U.K. doctors and am beyond frustrated. I had yeast infections off and on and was on the pill for many years (no longer), I am curious to find out more about what people think these things have to do with this problem. I just had an appointment with my gp today because my periods have gotten really bad (one week of cramps/spotting, followed by a real period); this has happened since I came off the pill due to having a blood clot in my leg last year. She wants me to consider the Mirena coil but I am scared it will make things worse, but am sick of the bad periods. Anyway that's my glamorous tale, hope to learn some helpful information here thank you!


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Re: Hello, just introducing myself

Post  Sarah001 on Wed Jul 13, 2011 6:56 pm

Hi Steff and welcome to the forum. I know lots of ladies here have had yeast infections, myself included, but I'm not really sure how they're connected as lots of women without V have lots of yeast infections too. As for the Mirena, I'd be very careful about that, my friend had one fitted and it gave her burning mouth syndrome so it may well make the V worse. Anyway, have a look around and ask anything you want to, if we can help we do. Wink

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Re: Hello, just introducing myself

Post  Sebby (Admin) on Sun Jul 17, 2011 9:26 pm

Hi and Welcome to the forum

I dont have a lot of faith in the uk doctors. Only met one that really understood.

I ended up researching the condition myself asking for the meds I wanted and paying for a biofeedback machine myself to do home treatment from www.vulvodynia.com - have had a break in treatment and a bad flare up recently so will not know how well im doing for a few more months yet

Keep researching and reading up on things, you will find the right combination of treatments even if you have to pester the doctors for them!


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Re Hello, just introducing myself

Post  Joolibee on Mon Jul 18, 2011 9:13 pm

Hi there, just wanted to comment on the mirena coil idea. I'm not going to advise for or against, but will tell you about my experience. My vulval pain came on very gradually over a number of years, involving UTI symptoms that did not always test positive for infection. I also had lots of uncomfortable brown spotting for up to a week before my period started. Then my periods became so heavy that I started to 'flood' in public. My GP suggested a mirena coil and referred me to gynea. At that point I did not know that I had vestibulodynia, as the pain was mainly manageable and I thought it was just perimenopause. Having the coil fitted was excruciatingly painful and the pain remained quite severe for a couple of weeks afterwards. It was after this that sex became completely impossible and the pain seemed worse than ever. I also spotted for 6 months, but no more heavy periods. When I had my check up, I mentioned the pain and the gynea said she did not think the mirena was the cause. I was too scared to have it removed, as I thought it might make the pain worse still. Anyway, I eventually forgot about the coil and embarked on various other treatments with variable success. I remembered the mirena a few months ago, when I realised that my periods have stopped so I no longer needed it. I had it removed in May and the removal was not too painful. However, with regard to my vulval pain, it has made no difference whatsoever. So I don't think the coil was directly connected to the v pain. It was just that a procedure that is painful for any woman was particularly painful for me. Good luck making your decision. If you do decide to get a mirena, I would ask for some anaesthetic / strong painkillers to help to deal having it fitted.


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calcium citrate

Post  Heidi on Sat Jul 23, 2011 1:59 am

I forgot to add that I also take timed calcium citrate and am on the low oxalate diet. Both help me a lot, although the low oxalate diet has really been the key for me. I've kept a journal of my treatments and tried to only add or delete one at a time (wait a month or so), so I could see really see the effects of the treatment. For example, looking back at my journal helped me realize that eating tomatoes was causing me to flare-up 2-3 days later (as did eating any high acid or high oxalate food). Of course I was in a continuous flare for the first few years; it was only after I started getting better on the diet that I could tell that something made me flare-up (severe pain, burning, itching).


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Re: Hello, just introducing myself

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