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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


Looking for guidence

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Looking for guidence

Post  Hodg72 on Sun Mar 31, 2013 4:27 pm

Hi to all

I guess I am looking for others with similar symptoms/experiences to mine, and looking at some of the posts I think I might find some here.

I have experienced itching, burning and some pain 'down there' for about 15 years. For 12 of those years I thought I had recurring thrush, and treated the problem accordingly. I had many swabs over the years, but was never actually told that they swabs were negative - so I subjected myself for the harsh treatments for years unnecessarily! Finally my Gynae looked in my file and asked why I was going through all the courses of treatment when I had always come back negative??!! (GRRRRR).

We them looked at other things such as dermatitis etc, and I was given steroid treatments to try. Nothing has really helped, although there are some (very few and far between) months when I DON'T suffer. That is the other thing about me - my symptoms are definitely ciclical (although this was poohoo'd by my Drs).

So - finally I was referred to a dermatologist to look at allergic causes - and after waiting for many more uncomfortable months I went through patch testing. I tested positive to an allergy to Balsam of Peru (has anyone heard of it??) and nickel. So - I have cut these products out of my life as best I can (Balsam of Peru is little heard of but in EVERYTHING! Especially in producst you are likely to use 'down there'. I have been looking on forums, and products suggested to me to use as an anesthetic or cooling gel seem to contain it (anything with Benzoayte, basically!)

My Dermatologist did suggest that I may have Vulvodynia, esp if my patch tests came back negative. I am wondering if this is in fact the case, as my symptoms are not always visble (especially when I get an examination) and also the sensation can be on one side, then shift front, back, other side, etc etc. I hve read that itching is not usually a symptom for this condition, through.

Any help GRATEFULLY received

thanks all

Hodg72

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Re: Looking for guidence

Post  jen007 on Sun Mar 31, 2013 4:52 pm

Hello Hodg72 and Welcome to the forum!

I've had vulvodynia for 5 years now. I too had itching and burning pains "down there" for a long time, mostly caused by chronic yeast infections. A lot of the time, vulvodynia is misdiagnosed as a bacterial infection. Theres a few ways to tell if you have vulvodynia...at least that I know of. Let me know if you answer yes to any of these questions:

Are you now on or have ever been on birth control?
Do you have any food allergies?
Do you get reoccurring yeast infections?
Is the pain constant or is it provoked? ....meaning does it hurt all the time or does it only hurt when you touch "down there?"

The allergy you mentioned could be the issue, but if you took all of it out of your daily routines, things should've gone back to normal. Also it isn't unusual to have periods of no pain. I always had pain...but only provoked pain, but a few women here have talked about going through a few months pain free or even a few years and then it comes back. Not sure why...this is a very strange disorder, in my opinion. I'd recommend finding a vulvodynia specialist if you have one near you. If you do have vulvodynia it is important to get some help to keep it under control.

-Jen

jen007

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Re: Looking for guidence

Post  Hodg72 on Sun Mar 31, 2013 7:05 pm

Thanks, Jen

In answer to your questions:

It seems that although I had suspected yeast infections, it wasn't so.

Food allergies would be the nickel and Balsam of Peru - both are present in both food stuffs and other products. I have ben advised to avoid tomatoes (Nickel) and the presence of B of P, and things that are similar (cinnamon, cloves, citrus peels etc etc) It is nigh on impossible to avoid in products AND food, but I've been doing my best by changing shampoos, any other bathing products used elsewhere on my body (I have not used products in the effected area for years) washing powders,, cleaning products etc. Really made no difference except to my bank balance!

When I get the symptoms, they are fairly constant, this month has been worse than recent - I am towards the end of my period and still in a bad way - normally things start up halfway through my cycle and finish as my period starts (hence my notion that my issues are cyclical and flare-ups with hormone levels). Sex is very uncomfortable both during and afterwards.

I am having acupuncture this week (haven't had since our long quest for a child (he's four and asleep upstairs!) - and am hoping she may be able to help me.

Thanks again for your response - other than my husband and Drs I haven't really talked about this before -As I said to my husband this morning, due to the nature of the problem, it isn't really easy to discuss, like evident skin problems behind you knee!

Fliss

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Re: Looking for guidence

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