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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

my life story

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my life story

Post  haykay23 on Thu Oct 17, 2013 3:36 am

My name is Hayley and I am twenty years old.  I have been recently officially diagnosed with vulvodynia.  For sometime now I have been hovering around the idea of having it but finally have a NP who gave me diagnosis.

Upon examination it was found that the mucosal glands around the vaginal opening were inflamed and very irriatated.  They hurt upon being touched and just felt burny/ sore.  She concluded that I had vv but it was localized and provoked.  She said that it was referring pain to my bladder, which made it feel like I had to pee, but the burning was actually external. I am currently on ETA cream, 7% lidocain, nortriptyline thirty mg, and ten mg of singulair.  My urgency symptoms still persist and seem to cycle with my period.  I am currently on mirocete after apri, which I was only on for two months and did not like.  I am currently sexually active but have not been since my current symptoms started most recently.  I have only had one partner and so has he.  I have also been checked for STDs, which I knew I did not have but I just needed to be sure.  I have had pretty bland diet and only drink on weekends and chose beer as it seems to be the least deadly choice. Basically what I’m looking for is if anyone else has had the 'gotta go symptoms', found a BC that works best, or has any tips for managing flares.  I am very stressed with school as I am in pharmacy school currently and have a heavy course load.

Last edited by haykay23 on Thu Oct 17, 2013 7:47 pm; edited 1 time in total (Reason for editing : needed to shorten)


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Re: my life story

Post  tinkerbelle2 on Thu Oct 17, 2013 10:37 am

Hey Hayley,

I'm Belle, nice to meet you Smile

I have read your story, sorry to hear that you've had such a rough time!

My vvd is slightly different to yours as I get the pain at 2 points one just inside and one at the opening. I really have no clue as to what triggered mine but I think it could have been a yeast or urine infection.

I too get that need to pee feeling, and sometimes it is very sore just after weeing. If I am at home I dab the area with a wet flannel afterwards. Currently the only relief I get is hot baths and swimming - the water seems to soothe the area. For others this would aggravate their problem further. I have also been using a topical spray called Xylocaine which is not actually meant to be used vaginally but is used to numb the mouth by dentists. The chemist said if it's safe for the moutg it should be okay for down there as it's similar delicate skin. I have also been drinking a lot of cranberry juice.

I think you should keep persisting with doctors, that's what I'm gonna do! It's great that you're close with your mum, I am too and it really helps.

Just remember you're not alone, the girls on this forum are really lovely and will be there for you and support you through whatever!

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Re: my life story

Post  haykay23 on Thu Oct 17, 2013 2:25 pm

Thanks for your reply.
I have found that taking aveeno oatmeal baths seems to help. The water seems to subside my symptoms.
Will have to look into the xylocine item.
Thank you for the support


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Re: my life story

Post  Sarah001 on Thu Oct 17, 2013 5:02 pm

Haykay please go and have your pelvic alignment and pelvic floor examined by a Women's Health Physio, the compression shorts could be helping because of an SI problem which could be tightening your pelvic floor up which does lead to UTIs because of incomplete emptying of the bladder (tight muscles don't allow the urine out easily) and a feeling of a UTI when one isn't present due to pelvic floor trigger points. If you do one thing to try and find the answer then please do see someone who knows about both pelvic alignment and pelvic floor trigger points as a first port of call.

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Re: my life story

Post  haykay23 on Thu Oct 17, 2013 5:05 pm

I have had mine checked and monitored but will look into other examinations. Thanks!


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