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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

Help Please I am O' so Confused

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Help Please I am O' so Confused

Post  Natty on Wed Dec 07, 2011 5:30 pm

I have Interstitial Cystitis which I have been dealing with nonstop since May. It is a condition where you have to pee all the time. In addition to this and I apologize for TMI but I have this awful arousal feeling in my clitoris and anus and I DO NOT want sex when this happens. It doesn't burn but it is so annoying it can make me cry. It is like those areas are over stimulated. Is this a form of volvodynia? My doctors don't know what to do with me... and to make it worse I have side effects to every anti depressant I take to help with this. Any idea what this is or how it could be related to VV?

Also, I am going on a low oxalate diet to see if that helps my Interstitial Cystitis. Do you have any suggestions on supplements to help reduce oxalate in my system?


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Re: Help Please I am O' so Confused

Post  Sarah001 on Thu Dec 08, 2011 12:06 pm

Most people with IC have very tight pelvic floors so it's possible your PF is pinching a nerve and causing this sensation. It isn't strictly V as it's not pain in the vulva but could still be coming from the same causes so I'd ask about seeing a Women's Health Physio about it to see if they can establish if that's the problem for you.

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Re: Help Please I am O' so Confused

Post  mars215 on Thu Dec 08, 2011 6:41 pm

Hi Natty,

I have IC, VV, and PFD... but I started with IC. In the beginning, I noticed a tingly but not painful sensation in my clitoris area as well. I thought it was a UTI, but the tests would come out negative. So, I understood it to be a type of flare from the IC. When I later saw a urologist, she diagnosed me with the VV and PFD. Not a clinician or anything, but I think that area can be related to IC or VV. Do you drink coffee often? I noticed that I would get that sensation the most in that area after drinking coffee.

I know this is prolly the last thing you wanna do, but maybe you can keep a log of foods that give you flares, and specify where the flares are. I know some types of foods trigger a flare in my left pelvic area, whereas other flares happen in my vulva area.

I am also on a low-ox diet... and it has eased me symptoms... I've also been taking fish oil capsules which can help with the inflammation...

Hope this was helpful...


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Re: Help Please I am O' so Confused

Post  Sarah001 on Thu Dec 08, 2011 8:33 pm

I do drink coffee yes with no increase in symptoms, mine isn't related to diet at all and nothing makes any difference in that respect. Done the low ox diet too along with calcium citrate and no reduction in symptoms from that, tried fish oil capsules with no effect and also had a try at the anti inflammation diet with no help whatsoever. Mine's very pelvic floor related and I start with a new physio in the next 2 weeks to work on that. I have lax ligaments so my muscles go loopy trying to stabilise and my pelvic floor is literally hanging on for dear life. I had a resting tone of 20 when I first had it checked and as it's supposed to be 2-3 mine's clearly waaaaay too high! Shocked There is another member here with IC who may be able to discuss it with you, look for posts by Aussie if you get time. There's also a discussion ongoing about Dr Robert Norse if you look for it and that's a diet related thread too. Some people notice a change from diet and others don't, I can eat or drink what I like and mine stays the same but the slightest tensing of my PF sends my pain levels through the roof.

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Re: Help Please I am O' so Confused

Post  Aussie on Thu Dec 08, 2011 8:40 pm

try the ic diet and give it 3 months. The diet can be found at the ic network website. I have most of the symptoms you describe. Arousal feeling etc. I am on herbs which has cut out clitoral pain and a large percentage of vulva pain. I have been dx with ic vulvodynia and pfd. Physio helped with sex pain now sex feels good. Daily pain i am targeting with herbs and diet. Low ox had no effect for me. Always here if you want to talk. Ic network has a sub forums for each treatment option. Xo


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Re: Help Please I am O' so Confused

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