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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

New Member - Not Offically Diagnosed, But Frustrated

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New Member - Not Offically Diagnosed, But Frustrated

Post  ehalaska on Tue Oct 29, 2013 8:23 pm

About three months ago my partner and I got into a pretty deep discussion about our lack of sex-life. I told him that I had actually been feeling pain for probably the last two years. Since I was regularly getting bacterial infections and yeast infections I kind of always just assumed that it was something that would go away. But when he brought it up, it sort of blew me away that it had been that long. I realized it was a bigger issue.

So I made an appointment with my regular NP at the local women's clinic. She found a small amount of both bacteria and yeast, but she also suggested that Vulvodynia may be the underlying culprit. The clinic I go to leans towards the natural, so we tried an alkaline cleanse to flush out my system, boric acid suppositories, and we did do a bomber antibiotic to try and deal with the bacteria. The bacteria didn't go away, and I'm still experiencing pain during sex. She's also referred me to a physical therapist for pelvic floor therapy. I haven't yet had my first appointment.

Reading on here, it's clear that what's going on with me is not even remotely as severe as it could be, but yesterday my partner had a bit of a meltdown about our relationship and sex-life. We've been together eight years and for most of those years we were really sexual. But the last couple have dwindled. I've now realized that it's due to the fact that I've been experiencing pain, which I kind of just have been plowing through because I still feel pleasure, and still want him to be fulfilled, but because of the pain, it's really hard for me to initiate. If he initiates and gets me going, I can just kind of ride the train through the pain and then deal with burning afterwards.

I think the most frustrating thing is that it all feels like a guessing game to me. Maybe I have vulvodynia, maybe I don't, but even if I do, that doesn't actually help anything because it seems like every treatment is a guess.

The one definite thing is that I feel sharp pain during vaginal penetration and experience intense burning after sex - every time. The meltdown my relationship had yesterday covered a lot of things, but more than anything, it felt like it was the lack of intimacy, and my seeming lack of interest in sex, at the root of it all. I'm getting worried, and frustrated, and a little scared.

He's a good partner, and I think with this being new to both of us, I'm not sure he realized just how much pain I've been in (probably cause I never told him...). Talking about it last night he suggested I get online and try and find a forum and see if other people have ideas for treatment. Don't know why I haven't done it before, because just reading through these other posts at least made me feel less alone. Really glad I found this site


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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  EviE°Bee on Sun Nov 03, 2013 4:01 am

It could be your hunny giving you an infection, it's not unheard of. Unfortunately, sex and VV go hand in hand regarding pain.

Here are a few tips I've heard of, maybe they will help you:
° Lidocane 10-15 mins before sex, nickel sized amount.
° Cold compresses after sex can really help
° Baking soda bath with warm water, not hot
° Gentle sex
° Try different sex positions, some don't cause as much pain
° Non penetration sex. It's a long list, you should look that up.
° Anal sex (not for everyone)

Personally, I used to have sex often, right now it's 2x a month, maybe 2x a week. It just depends on how your feelin. If I have 2-3 good days (pain is 1-2 on a scale of 10) then i'll try and have sex. If not then he can wait lol.

Hope this helps a little.

Evie bee


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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  Kathy100 on Wed Nov 06, 2013 11:46 am

Hopefully the physical therapy will start to help you - it has done with me. Other things to try are deep breathing and pelvic drops to relax the whole pelvic floor area (which is usually tight if you have v as the muscles tense up) before & after sex. Amy Steins book Heal Pelvic pain has some exercises in to stretch the pelvic floor.

Lidocaine numbs the area - so can work or you could ask your doctor for some painkillers - notriptyline helped me with burning initially.


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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  tinkerbelle2 on Sun Nov 10, 2013 9:59 am

Hey ehalaska,

I totally get what you mean about the guessing game. It seems to be a really vague condition. I was told that vulvodynia is kind of an umbrella term which just means 'unexplained pain in vulva/vaginal area'. It isn't a disease or infection but more of a condition. So if that's what you have then you can call it vulvodynia. I agree with all Evie bee's suggestions. And keep trying with doctors! I try and think to myself, if there was a time when I didn't have this, surely it can go away again.

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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  Fingerscrossed on Tue Nov 12, 2013 10:51 pm

I also only have pain during sex, so I understand your frustrations. My issues started about four years ago and I have always had pain during pelvic exams and at the beginning of sex, but for a while it was fine. I was diagnosed with vulvodynia and pelvic floor dysfunction in March and have since been placed on meds and regular physical therapy. I'm going to have a vestibulectomy in December. My now husband does get frustrated with our lack of a sex life, particularly since I tend to avoid too much intimacy, but he has been wonderful.

I hope that your problems get better without resorting to surgery or medicines! Sounds like you've got a good, supportive guy. Just keep communicating with him.


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Re: New Member - Not Offically Diagnosed, But Frustrated

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