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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 diagnosis - what's my outcome?

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New diagnosis - what's my outcome?

Post  christine12345 on Wed Aug 22, 2012 6:28 am


I've been dealing with pain for about 2 months now, and my doctor has suggested I may have vulvodynia. I need to see a gynecologist to know for sure, and will unfortunately have to wait about a week.

I can't understand from what I've read online - what is my outcome? Is it possible to treat the pain successfully and live a normal life? Everything I've read online is just completely freaking me out.

Currently I'm having pain sporadically throughout the day, unprovoked. It lasts for a few hours, and then will go away for a few. Some days are worse than others. I have not had issues with penetrative sex if gone about when the pain is not occuring.

Has anyone been succesffully treated with antidepressants or anything else? Or will this just be pain that I'll have to deal with for the rest of my life?


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New diagnosis- what's my outcome

Post  Sunflower82 on Thu Aug 23, 2012 8:04 am

Sorry to hear you are suffering,think you question relating to outcome is really hard to answer as everyone responds differently to treatment. There is also so many doctors out there who don't even recognise the condition. I had to see 15 different people over a three year period to get diagnosed! The usual treatment is anti depressants which I have been taking for over a year now, make a slight difference but not a huge amount. The most benifitial think that has helped me is physio. A women's health physio will look at your pelvic floor muscles and any other muscles you have tension in e.g the first time I went she told me I'd been holding my tummy muscles in, I had no idea I was doing this, the tension in my tummy would then also connect to the pelvic floor muscles. I am also seeing a chiropractor at the mo, have to see what happens ! The downside is that I have had to like may others, I've had to pay for the treatment that I have recieved!
The only tips I can suggest is may sure you know about the condition when you see the gyno! But don't over research on the Internet. I am sure you know about all the basics don't use soap, don't put anything on the vulvar area wash with water or aquoeous cream, be careful with fabric softener, wear cotton underware, avoid using tampons and buy natural sanitary pads (natura care I think ) all the other are bleached which could cause irritation, if u use lube, use a natural one (yes lube)

Hope this helps



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Re: New diagnosis - what's my outcome?

Post  LillyK on Mon Sep 03, 2012 2:36 am

This doesn't mean you will have pain for the rest of your life!!! I promise. I suffered for a year and a half before getting diagnoses properly. Then I tried alternative medicine, specifically acupuncture, and it helped me tremendously. I felt so good I was able to have sex again and got pregnant. The further along I got the better I felt, and after having my son I was pain free for FIVE YEARS. Now, it's come back just this week and I am starting over again trying to get rid of it. But I believe this is due to stress, and possibly my pelvis being misaligned, which it was when I had vulvodynia previously. Some tips, some of which you have heard before I'm sure: only use free and clear detergents, nothing with fragrance. That goes for your toilet paper too. Switching to all organic products and food helped me. Drink loads of water. Double void when you go to the bathroom. Do everything you can to relax yourself. Explore chiropractic, acupuncture, physical therapy/biofeedback..anything that might help, do it. Give yourself a shot at a normal life again. I realize I'm saying this after having a relapse, but I had 5 perfectly pain free years and I intend to get back on that road again asap. I know it can be done. Hang in there. OH and it sounds counterintuitive, but if you can stand it, have sex more often. It will help stretch those pelvic floor muscles so that they don't get any tighter.


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Post  lavrose on Sun Sep 09, 2012 9:00 pm

Well, that depends, you mite have just a yeast infection, and in that case, most OTC stuff wont cure that and what you have to do is change your diet to incorporate more natural things like whole grains, fruits, vegetables, yogurt, and keifer, a multi vitamin, a good, hardcore probiotic, and healthy fats (coconut, hemp, flax oils), and treat the area inside and locally with essential oils (my method) or you mite have an underlying infection which may cause more of a problem such as Ureaplasma, which is not routinely tested. That turned out to be my problem. I had an underlying infection, and thats why, no matter how I changed my diet or howm many antifungles Id take, nothing really eradicated the problem.

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Post  lavrose on Sun Sep 09, 2012 9:01 pm

Essential oils like lavender, rosemary, tea tree, and manuka, in a coconut oil base, please view my posts

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Re: New diagnosis - what's my outcome?

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