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Do you ever worry that you're making it up?

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


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New member

Post  misstrish on Thu Jan 19, 2012 4:39 pm

Hi! I'm 21 and I've had vaginal itching consistently for the last 2 years. At first all the doctors I went to said it was a yeast infection, but since none of the treatments for yeast has worked my newest doctor thinks it's vulvodynia or something related to that. I've been suffering alone so it's nice to know there are other women out there who are experiencing the same thing. Here's hoping that we can all find a cure!

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Re: New member

Post  JemimaSurrender on Thu Jan 19, 2012 4:42 pm

Heyy.

It's nice to see someone else who has the itching! I get it on and off, along with the consistent pain, but it's not really recognised as one of the symptoms.

Check out some of the posts on here and see what you think. If you're like anyone else, just reading other people's experiences offers you some relief!


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Re: New member

Post  Sarah001 on Thu Jan 19, 2012 5:15 pm

Itching isn't usually a symptom of V, it can be but a skin condition should be ruled out first by a vulvar dermatologist so if you haven't seen one already ask for a referral before you accept the V diagnosis.
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Re: New member

Post  misstrish on Thu Jan 19, 2012 5:35 pm

Yeah I thought it was weird too, since every website ever says that pain is the number one sign of vulvodynia, and I've never had anything like that. But my doctor has looked a number of times and says it doesn't look like a yeast infection, and different people's sense receptors or whatever interpret signals from the brain differently, so it's possible that what would be pain for someone else is itching for me. I've been wanting to get in to see a dermatologist for a long time, but I don't really know where to find a vulvar one... it's also difficult because I'm at college right now and not very close to home, so it's difficult to see a doctor over a long period of time, and dermatologists are always booked months in advance. I'll definitely try to look into it though. My skin gets really dry in the winter, particularly on my hands (to the point where they crack and bleed pretty badly), so maybe it's possible that I have some kind of skin condition that's perpetuating it.
Although, I did have a biopsy done at one point and they didn't find anything wrong, except the skin was slightly thickened. I'm not sure if that means anything though.

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Re: New member

Post  Sarah001 on Thu Jan 19, 2012 8:50 pm

The way I got to see a vulval dermatologist was a referral through the GUM clinic at the same hospital, usually the ones who specialise in vulvar skin conditions travel around the various hospitals in their area and see women on a monthly basis. You could ring your nearest hospital and ask if they have one or if not where the next hospital that does is and go from there. Anyone with itching should get checked out by a dermatologist, I have a friend who gets eczema on her vulva and it causes lots of itching and thickened skin and she gets creams to use on each break out so it's no longer a constant thing and is mostly under control. It took me about 3 months to get the first appointment but after that she arranged to see me on a regular basis, mine wasn't a skin condition but most of the V dermos also deal with pain conditions in the vulvar so she was in charge of my medication. It's definitely something you should look into, if it was yeast it would show on a swab so that could easily be ruled out by who you see now or a GUM clinic. Let us know how you get on.
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Re: New member

Post  JemimaSurrender on Thu Jan 19, 2012 10:10 pm

Sarah001 wrote:The way I got to see a vulval dermatologist was a referral through the GUM clinic at the same hospital, usually the ones who specialise in vulvar skin conditions travel around the various hospitals in their area and see women on a monthly basis. You could ring your nearest hospital and ask if they have one or if not where the next hospital that does is and go from there. Anyone with itching should get checked out by a dermatologist, I have a friend who gets eczema on her vulva and it causes lots of itching and thickened skin and she gets creams to use on each break out so it's no longer a constant thing and is mostly under control. It took me about 3 months to get the first appointment but after that she arranged to see me on a regular basis, mine wasn't a skin condition but most of the V dermos also deal with pain conditions in the vulvar so she was in charge of my medication. It's definitely something you should look into, if it was yeast it would show on a swab so that could easily be ruled out by who you see now or a GUM clinic. Let us know how you get on.
How weird! I've just made a post about this under "Red Spots"!

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Words of advice

Post  AroraNightfire on Fri Jan 20, 2012 5:50 am

My Vulvodynia started at the age of 18, 9yrs ago in the form of a chronic itch all over the inside part of my vulva and vaginal opening. I was given yeast creams to use externally in the begining and it soothed it but didnt cure it long term. 3yrs ago I was given a skin thinning steroid cream that I used for this mysterious debilitating itch for 2yrs. It soothed it when I applied it but after about 1yr 1/2 of using it it started to feel slightly more raw when I used it. I ignored it and continued using it. I had to stop it about 1yr and some months ago because it felt like someone had took a blow drier to my groin. I started to not be able to wear pants and sitting down was impossible. NEVER EVER use a skin thinning steriod cream for itch longer than a few months even if the itch persists!!!!! Please dont!! Im trying to write a book about everything Ive gone through. I would talk about it all hear but Im not so sure.
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