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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


Not sure what's wrong with me, but....

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Not sure what's wrong with me, but....

Post  haybay on Tue Mar 31, 2015 8:15 am

I'm so glad to have found a group of women experiencing similar symptoms! My symptoms have been progressing for at least five years now. I'm 27 years old, and I'm finding that I'm becoming more and more insecure and depressed as a result of my symptoms, as well as the uncertainty of any diagnosis. Some suggestions have been made by three doctors, but no one has been able to "cure" me or provide me with any guidance to reduce my discomfort.

My case, like many others I've read, is not simply explained. There was no "start date" and old symptoms have manifested into new ones. However, I have noted some variances in my own experience that may or may not fall under the broad vuvlodynia umbrella.

I'm very interested to read more from the members of this forum so that I can be better prepared to choose my next doctor, and more equipped to ask and answer questions when I have my next opportunity.
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Re: Not sure what's wrong with me, but....

Post  x_chelss@live.com on Thu Apr 02, 2015 11:23 pm

You probably haven't found a 'cure' yet because there isn't really one that works for everyone. Most woman have to try a whole range of treatments before finding any relief. I tried 4 different treatments and then ended up having surgery (vestibulectomy). The surgery has definitely helped relieve some symptoms.
Good luck x

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Re: Not sure what's wrong with me, but....

Post  haybay on Fri Apr 03, 2015 2:26 am

What type of symptoms is the surgery intended to relieve?
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Re: Not sure what's wrong with me, but....

Post  sailor_moon on Fri Apr 03, 2015 10:32 am

I'd like to know the answer to the above question too^ the thought of having to have a vestibulectomy really really scares me....On what the area looks like afterwards appearance - wise. ..especially if the surgery is unsuccessful.
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Re: Not sure what's wrong with me, but....

Post  x_chelss@live.com on Fri Apr 03, 2015 3:08 pm

Before the surgery I had constant burning, stinging, like someone was pouring acid into my vagina. I couldn't have pain free sex, I couldnt sit normally or wear tight clothing. I couldn't walk for a very long time which made my job very difficult.
Now I've had the surgery all the symptoms above have vanished really I never have the burning from my vagina hole and sex is getting more and more easier and less painful. I can walk for long periods of times and I can sit normally again.

To the woman who asked about the appearance off the vagina after the surgery, it honestly doesn't look all that different if anything I prefer the way it looks now to the saying used to. They cut away my hymen and the tissue from inside my vagina cut down towards my anus (modified fenton) to make my vagina wider and injected Botox to stop my pelvic floor muscle from spazuming. I'm 9 weeks post op and I do still have red sore tissue from where the stitches were but it takes a year to fully heal from a vestibulectomy. My every day life is so much better than what it was, when I had the surgery I was warned it may not work and I'd loose lubrication, in my eyes it has worked im not 100% at the moment but I'm a lot better than what I was this time last year.
I have lost lubrication so without lube sex won't happen but I'd rather use lube than be in pain for the rest of my life. I only had a parcial vestibulectomy so only half off my vestibule was removed, if you have a full vestibulectomy the WHOLE of your vestibule is removed. I only have half off my labia minor lips as the bottom half was cut away so the tissue from the inside could be sown together.

It took me a year and a half and 4 doctors to finally get the surgery but it was by far the best decision for me, and even if it never worked I'd still do it again because the recovery wasn't that bad. I was back at work after 2 weeks and they told me I'd need 6 weeks off work! I still have irritation with urination and tenderness on my anterior vagina wall but I think that's related to my bladder and NOT vulvodynia.

Private message me if you have anymore questions x

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Re: Not sure what's wrong with me, but....

Post  haybay on Fri Apr 03, 2015 4:30 pm

Thank you for the quick, detailed and well explained response. I do not think my symptoms would benefit from any kind of surgery unless they took off my whole top layer of skin around my labia majora.
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Re: Not sure what's wrong with me, but....

Post  x_chelss@live.com on Sat Apr 04, 2015 9:14 am

A full vestibulectomy would remove the area you are talking about. The vestibulectomy I had only removed the painful tissue, I do still have some painful tissue but nothing compared to what I was experiencing before. And I'm hoping that it's just scar tissue which is causing discomfort x

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Re: Not sure what's wrong with me, but....

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