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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 member - Glad to find this connection

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New member - Glad to find this connection

Post  Laura on Wed Aug 24, 2011 7:41 pm

I discovered this site yesterday and like most people here, feel so reassured that I'm not the only person in the world trying to live around this pain. My symptoms started after I was diagnosed with interstitial cystitis almost 20 years ago. Since then, the I.C. smptoms have abated but i have Vulvodynia flare-ups for no apparent reason lasting from a few days to months. So many comments here have resonated with me. Did I do something to cause this? How do I prevent my life from revolving around this? How do I stay engaged in the world when I just want to curl up, not talk to anyone, and stop hurting? Have seen many doctors, received varying diagnoses. Tried lidocaine ointment, biofeedback, diet changes all with no effect. Exercise helps mentally, but when I need it most it's the last thing I feel like doing. I'm 52, live in Arizona. This group feels like a lifeline.


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Age : 58
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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Aug 25, 2011 11:56 am

Hi Laura and welcome. Hopefully you'll find some interesting threads on here and feel free to discuss anything and everything with us all, we're like one big family on here!

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Re: New member - Glad to find this connection

Post  Zazu on Fri Aug 26, 2011 12:11 pm

Hi Laura and welcome Smile
I hope you find lots of support and advice on here - and that it helps you feel connected. I identify with a lot of the questions you mentioned, too. In terms of what you've tried - it doesn't sound like you've taken the 'drugs' route yet. A lot of women understandably are hesitant to start taking amitriptyline, gabapentin, etc. etc. One thing you might want to talk to your doctor about is a compound cream where they put one of the nerve calming drugs into an ointment or gel. Right now I'm using a 6% gabapentin, 5% lidocaine in diffusimax gel It's a good intermediate option.
Best to you! Be well!


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Katie + Laura

Post  Aussie on Mon Aug 29, 2011 3:17 am

Could you please tell me the base that is in your cream. Is it compounded with something non irritating like parrafin wax? I want to try this but not yet available in Aus. My doc said he will do up the script if I can find what base others are using. I also am interested in the Ami/Balofcen (sp) gel. Nerve med/muscle relaxant compound.

Laura, you have come to the right place. I suffer with IC too. How did you resolve your symptoms? at the moment I am doing IC diet, oxytrol patch, heaps of water and heat and have ordered cystoprotek and prelief for meals.

Glad to hear this part has subsided for you (remission?! Smile) dealing with both IC and V is tough, very tough!



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Re: New member - Glad to find this connection

Post  thiemli on Wed Sep 21, 2011 6:39 pm

I am new here too and am looking to see if anyone had success with the neogyn cream? I have seen several docs and all say to stay away from all creams. I have tried them all i feel like. I do think my symptons subside when I use nothing but sometimes unbearable. I am a mother of 4 small children and feel like i can't take care of them when I am in pain. It is terrible. I know it is worse for some of you. Mine (vestibulitis) comes and goes. I actually had it gone for over a year and a half and it returned. I thought the birth of my children is what brought it on and when pregnant or nursing i would get inflamed. AUUUUGGHHH. just looking for something to survive right now. Surgery is not an option with my small children that is my doctors next step.

Please advice if you have used neogyn or found any temporary relieve


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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Sep 22, 2011 10:10 am

We've actually got some ladies trying neogyn at the moment but I don't think any of them have reached the end of the recommended trial period yet, I'm sure they'll update us all when they do so keep coming and checking.

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Re: New member - Glad to find this connection

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