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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


DUAL DIAGNOSIS?

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DUAL DIAGNOSIS?

Post  Sore on Sat Jul 07, 2012 11:34 am

Hi guys

I've read quite a few posts on this forum to try and get an understanding of other peoples' experiences and to see if they relate to my own. I feel comforted to know I am not alone. However it is clear to me now that our experiences are all so different. My vulva pain began in March 2011 (although I do remember experiencing occassions of pain as an adolescent). I initially ignored the pain for several months, expecting the problem to 'just disapear'. However, it just got worse. I eventually went to the GP thinking they'd know what the problem was and have a straightforward cure. Boy was I wrong! So there began my path to Nowhereville. After seeing various doctors and specialists, I am still suffering from vulva pain most days of the week. I saw a Melbourne gyno at St Vincents who said I had Contact Irritant Dermatitis. When I mentioned Vulvodynia (as I'd done some research before the apt.) he said he didn't believe in that diagnosis and reccommended all the ususal advice off the net, such as white cotton dax, hypoallergic toilet paper, no soap, no hot baths, etc, which I have pretty much followed to the letter for several months to no avail. I also got reffered to the Royal Womens for a second opinion and the Dermo-Gyno said there nothing visably wrong with my vulva and diagnosed Vulvodynia. Although when I saw the specialist physio there she said I did have redness down there. So I just feel confused. I have tried various remedies, including creams, vitamins, cleaning regimes, Endep, ice packs, Ural, etc. but nothing has gotten rid of the pain for good. Sometimes something I try will help with relief, but not always. So basically my burning, stinging pain comes and goes. Somedays it won't be there, but mostly it is to some degree. It could come in the morning, day or night. The biggest trigger is after urinating. But there isn't anything on the net about pain after urinating, only during. Also heat is a problem. I tend to overheat very easily, most because I'm obese and don't exercise (I suffer from depression which is currently under control). I love to be healthy again, so I knew whether my obesity was contributing to my problems. I read somewhere that being of a healthy weight was the single best thing you can do for vulva pain. Housework or electric blanket use also doesn't help with the overheating. Can anyone else relate to my experiences? I'd be greatful to know I'm not alone.

Nicole
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Re: DUAL DIAGNOSIS?

Post  Sebby (Admin) on Sat Jul 07, 2012 11:05 pm


Welcome to the forum

I hope you find our community supportive and helpful.

Are you on or have you tried any medication such as anticonvulsants/antidepressants specifically for the pain?


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Re: DUAL DIAGNOSIS?

Post  Sore on Sun Jul 08, 2012 7:09 am

Hi and thanks for the reply Sebby. Yes I'm currently on 70mg Enep (Amitriptyline), which I was told was the max dose. However, it has done nothing for me so am thinking of stopping, but will be discussing with GP this week hopefully. I've been on this medication for over 3 months and figure it would have done its job by now.

Nicole
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Re: DUAL DIAGNOSIS?

Post  amtali on Mon Jul 09, 2012 1:13 am

70 mg may be the max dose for depression, but my doctor said the max dose is 150. That's what I went up to. I noticed a slight difference with unprovoked pain, but my provoked pain during intercourse stayed. It's definitely worth looking into though. Everyone is different.

Let me just say, I am so glad that you went and got a 2nd opinion after that ass of a doctor. Doesn't believe? What does he know?

Good Luck!

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Re: DUAL DIAGNOSIS?

Post  Sore on Mon Jul 09, 2012 6:03 am

Thanks for taking the time to reply Amtali.

The prescribing specalist did say 70mg for vulva pain was the max for this medication, although I know as you have mentioned that some doctors prescribe higher doses of medications depending on the needs of the individual they are treating. I believe she also mentioned there were other medications I could try if Endep didn't work, but my next apt. is months away due to the clinic being so busy. So I guess I'll just wait until then, as I just don't feel this is the drug for me, but I'll discuss it with her when I see her. I've made a GP apt. in the mean time about what to do in the mean time.

By the way, the gyno I mentioned in my first post was a lovely man but I just think he was 'old school', as in he was from an older generation and not into newer diagnosis such as Vulvodynia.

Take care

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Re: DUAL DIAGNOSIS?

Post  Sebby (Admin) on Mon Jul 09, 2012 7:46 am


I am already on Sertraline for depression and anxiety so cannot go on ami. I am on Lyrica (anticonvulsant) 400mg.

I have also found relief with the unprovoked but yes provoked pain is still there...think it always will be but I manage it as I have always had to do.

Deff discuss pain killing options with your doctor...

Good luck and don't give up


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Re: DUAL DIAGNOSIS?

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