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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


Just Diagnosed- frustrated and worried please help

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Just Diagnosed- frustrated and worried please help

Post  ESR on Sun Oct 13, 2013 11:03 pm

Hi all,

I am 18 years old began trying to have sex for the first time 7 months ago with my boyfriend and we never managed it at all due to the pain and probably additional tension in my vaginal muscles.
I found my journey to being diagnosed very emotional and confusing, going on internet sites, a family planning clinic before finally going to a GUM clinic where they did that cotton bud test and decided I have vestibulodynia(?? I have the provoked one, I think that is the name for it) The doctor said the friction involved during attempting penetration causes irritation in four areas/glands around my vagina, in the way of redness, swelling and stinging, similar to the way for example pollen makes hayfever sufferes' eyes itch and go red and puffy . I have very bad hayfever and maybe slight eczema and asthma and this makes me 'atopic' and this could possibly be the cause of my vestibulodynia.
Everywhere I look there seems to be different information about the causes of this condition and I just wonder if anyone really knows enough about it, even when it affects so many people.
The treatment plan the doctor gave me consisted of applying a weak anaesthetic (instillagel) to my vestibule three times a day then when I used that all up move onto a stronger anaesthetic (lidocaine 5%) for two weeks, which I am currently in the middle of doing. After those two weeks she said I could try sex again. She said the aim was to 'retrain' that area to not be so sensitive but I just feel sceptical about this actually working. She also gave me some antihistamine pills (ucerax) and isntructed that I should take one before I have sex. I was wondering whether any of you were given the same treatment and if it's worked because as of yet I have not found anyone else who has been told to continually numb the area for retraining or something.
I would love anyone's opinion or help with my problem and will be so grateful for the support from someone who knows how I feel.

ESR

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Re: Just Diagnosed- frustrated and worried please help

Post  Alana3 on Mon Oct 14, 2013 12:13 am

Uh its not gonna just stop because you numb it. I used lidocaine but because of pain. Once it wears off it will.come right back.

Alana3

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Re: Just Diagnosed- frustrated and worried please help

Post  EviE°Bee on Mon Oct 14, 2013 7:32 am

ESR,
your gonna be asked to try a whole lot of different treatments and some may work, some may not. Depends on the lady and culprit. Everyone responds differently to meds, creams, injections, ect.

Best thing to do is do a bunch of research regarding VV, keep a daily log of your symptoms and possible irritants (diet, activities, ect), how you respond to treatments.

I know it's overwhelming and I wouldn't wish VV on my worst enemy but your not alone.

I've never heard of "retraining" the vulva back to normal. Keep us posted. Muah.

Evie Bee

EviE°Bee

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Re: Just Diagnosed- frustrated and worried please help

Post  mary jane on Mon Oct 14, 2013 9:29 am

Don't worry, everyone is different and has different sets of symptoms. You will find something, you're very young and the body recuperates fast !
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Re: Just Diagnosed- frustrated and worried please help

Post  Alana3 on Mon Oct 14, 2013 12:13 pm

I've heard of retraining but typically after a diagnosis of vaginismus or surgery. Lidocaine blocks pain while on it but when it wears off the pain is still there. It would work it you had muscle pain but not nerve/skin pain. Maybe get another opinion...

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Re: Just Diagnosed- frustrated and worried please help

Post  Sunflower82 on Tue Oct 15, 2013 7:33 pm

When I was first diagnosed I got given the same treatment the strine gleans then lodicaine. Which helped in the shirt term when I used it but didn't give any long term relief. The got given trimovate cream which is a steriod and told to come back in three months! After that was out on anti depressants after 6 months I said it made know difference and I was told, "of course it has" it hadn't it didn't feel any difference!
The only think that helped was Physio, this I had to pay for privately. I am now able to have sex the pain does come back but I have a back related issue that makes my vulvar pain worse.

Hope this helps

Kt

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Re: Just Diagnosed- frustrated and worried please help

Post  Sunflower82 on Tue Oct 15, 2013 7:35 pm

Oh dear lots of auto corrects !
I had the same gel in the syringe that was supposed to say !!

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Re: Just Diagnosed- frustrated and worried please help

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