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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


New here/Advice about life with vulvodynia

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New here/Advice about life with vulvodynia

Post  blueberryrabbit on Mon Sep 08, 2014 3:06 pm

I haven't been on a website forum in years, but this is probably the only way I can really talk about this.

I'm 23, and I've had vulvodynia/vestibular pain/pelvic floor dysfunction since I was 15 (I've probably had it for much longer than that and don't really remember). I also have PTSD from being in a sexually and emotionally violent relationship for 5 years. I can have sex, but not without pain, and having flashbacks/panic attacks after awhile. I have moments where I can't walk, or really think about anything other than my pain. Bike riding, sitting in really uncomfortable chairs, or anything that requires a lot of pressure on my pelvic muscles is impossible.

I can't afford to go to a physical therapist (who can only be seen once every 6 months anyways- my insurance is funny like that), and medications such as Gabapentin make me sick. So all I can really do is find strategies to deal with my pain. I squat when I pee to prevent anything touching down there, and I try not to wear pants/underwear that prevents me from "breathing down there", haha. Ice directly on my vestibule helps when I'm in pain, but I feel embarrassed bringing ice with me to the bathroom when I'm not home.

I'm frustrated that I have to live with a pain condition, but the most I can do is try to accept it. I'm extremely worried that I'll never be in a relationship with someone who understands the physical and emotional intensity that I deal with. I've tried to explain my condition to other women, especially those of my friends who are "sex advocates", but they don't really understand that it exists anyways. I feel completely alone, and I don't want to acknowledge my sexuality, because I've given up ever really having one without excruciating in mental and physical pain.

Smile I appreciate you reading this and I'm hoping you all find peace and healing.

blueberryrabbit

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Re: New here/Advice about life with vulvodynia

Post  RoseKa on Mon Sep 08, 2014 6:57 pm

Hi blueberryrabbit

Im sorry to hear what you are going through and while so young sweety! I hope you will get a lot of support and understanding from the members here. I know that this condition is a living hell at its worst, ive been there for a long time... im now on a journey to heal it one day at a time without medications then i found the other thread on here called "Pain Free With Dr Robert Morse" and have since been helped a lot for free on that thread by a generous and wise young man who has answered all my questions so far and steered me in the right direction. Im now in much less pain, i can put warm water on the vulvar without the pain increasing (it used to make it burn and sting so badly i would go into a fetal position and cry). Other benefits are that i sleep better at night and my high blood pressure is almost within a healthy range.... Me and my hubby think that if it continues to get better at this rate we might be able to have sex again soon, after a long time without it because i eventually couldnt stand the pain it caused

It is so sad to me that someone so young has to deal with this. I hope you can maybe read that whole thread. Maybe it will help. I dont think we have to live with this if we dont want to and choose to really do something about it... So far my experience is that we just have to do what it takes to help the body heal it and have patience while it takes care of the rest http://vulvodyniasupport.forumotion.net/t622-pain-free-with-dr-robert-morse

RoseKa

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Re: New here/Advice about life with vulvodynia

Post  sailor_moon on Mon Sep 15, 2014 11:41 am

Oh you poor poor thing. I so feel for you.

I am only a couple of years older than you. I know how hard it is being a young person with this nightmare of a condition.

Can I ask what type of symptoms you experience? And do you have any other symptoms besides vulvodynia and your mental state?

I have only just gotten onto a great doctor after a year and a half...and after 12 other doctors telling me it was all in my head and needed antidepressants. It turns out I have an EXTREMELY rare hormone imbalance, one that goes undetected unless you pay to get a special blood test done. I am in the midst of other tests to put the pieces of the puzzle together so I can't say I'm cured yet, but its a great start after a year and a half, and $8000 down the drain on treatment that hasn't worked.

Have you seen a Gynecologist that specialises in vulva disorders?


Don't give up. Sad no one should have to live with this.

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Re: New here/Advice about life with vulvodynia

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