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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

Newly diagnosed

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Newly diagnosed

Post  drivenbyambition on Mon Mar 02, 2015 11:35 pm

My story started when I noticed a burning sensation last year. My period was late and I wore a maxi pad in fear of my period starting unexpectedly. I got very irritated and eventually ended up with bacterial vaginosis (that I believe happened due to the maxi pads). When I went for my pelvic exam, I was diagnosed with the previous mentioned condition, but was told treating it would not heal my inflammation. I was told to use diaper rash cream, hydrocortisone, etc. Nothing helped. Fast forward to this year, I began seeing another doctor, an OBGYN. He prescribed a cream at first, which gave a little bit of pain relief the first few days, but discontinued when I realized it was not working. He said if this cream did not solve my issue, it would be time for a biopsy. He said it could be a number of conditions because vulvar issues do not present themselves the same way in each woman. This past appointment, last Monday, I had the biopsy. I cannot describe the pain I went through with the lidocaine injection. It was bearable, I did not cry, but I never want to have another one. I was absolutely miserable this past week. I received the official call that I have vulvodynia and will be referred to a specialist. I have been prescribed Gabapentin, which the side effects scare me, and my husband I both wonder how an oral medicine is going to help with the redness and inflammation. I am so very scared to never be the same again. I'm scared about the long-term effects of this medicine on fertility, because I am yet to have children. Sorry for the long post, and as much as I hate this condition, I am glad I have found a place where I'm not ashamed to talk to others about it. It's been hard this past year, because no one has understood my every day struggle. Thanks for reading.


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Re: Newly diagnosed

Post  meelie on Thu Mar 05, 2015 1:04 am

Please let us know what your specialist says. Gababentin (Neurontin) is actually a seizure medication that has been discovered to help to numb nerves and decrease nerve pain. It is prescribed a lot for what we have. Also Lyrica is one of those that is newer but costs more. It is also prescribed for people with Fibromyalgia and Diabete nerve pain. You can look it up on the net, google it. It should tell you if it's been okayed if you get pregnant. Don't know anything about a long term effect for when you bet pregnant later. I imagine it doesn't change in Chromosomes so it should not affect a future pregnancy especially if you are already off of it. I can't imagine, though, pushing a baby out of my vulva burning like it does. Ouch. Or even getting pregnant for that matter. Good luck. Hope this helped and don't forget to tell us if your specialist has any new methods.


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Re: Newly diagnosed

Post  drivenbyambition on Thu Mar 05, 2015 7:23 am

I am still waiting for my appointment to be scheduled. I do know that she will begin by prescribing medicine. Starting with one and going through about five. She has her full treatment plan listed online. Last resort would be surgery.

I have decided not to take the medicine yet if at all until I have my first child. I would prefer to have a C-section due to this condition, which I never thought I would ever say that.

Thanks for taking the time to reply. I'm quite nervous and scared.


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Re: Newly diagnosed

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