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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


Any chance this could be something other than vulvodynia?

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Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 5:45 am

I'm 45 and was diagnosed with vulvodynia 2 years ago. I was put on amitriptyline and vagifem and got the symptoms pretty much under control for almost 2 years, with just minor flare-ups whenever I'd have to wear a pad during my period. I weaned myself off the vagifem after the first 6 months and still didn't have a flare-up. Then in mid-June of this year, I started getting vulvar inflammation and burning again. I went back to my doctor (who is clueless when it comes to this condition) and renewed my prescription for vagifem and increased the dosage of the amitriptyline to 50 mg per day.

I have yet to get symptoms back under control and it's been 2 months now. I've been taking calcium citrate and magnesium and somewhat following the low oxalate diet, in addition to continuing to take the ami and vagifem.

I can have some days where I feel quite good and I feel hopeful. The last 4 days were good, but then today has been horrible again. I have had hemorrhoids since my first pregnancy 15 years ago and they seem to flare up too when the vulvodynia flares up. I also feel like I'm swollen inside. When this flare-up first started, I was definitely swollen outside, but now I feel like the swelling is all internal. Some days I can barely sit. I've also noticed the last few nights that the vagifem is difficult to insert, as though there is something at the top of the vagina preventing it from being fully inserted. Yet when I check myself with a finger, I don't feel anything abnormal, other than feeling swollen. So maybe it's just the swelling preventing the vagifem stick from going all the way in, I don't know.

I saw my doctor yesterday and I'm waiting for a referral to a gynecologist, which can take some time. This is probably wishful thinking, but I keep hoping this gynecologist will tell me the first one 2 years ago was wrong and I really don't have vulvodynia and that what I do have is very simple to fix. The thought of continuing to suffer with something for which there is no known cure just makes me so depressed.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 7:59 am

Are you in the uk? If so you can make an appointment at your GUM or sexual health clinic. They were so much more helpful than my doctor who told me to out up with the pain. Mine too felt swollen to me but my doctor told me it was normal. Sexual health doctor found my problem straight away. Amitryptilin was the first treatment but he said if itddidn't work there were other options. I cried in his office. It was a relief to have someone who wanted to help. Luckily amitryptilin worked but its only been about two weeks since I stopped taking it and I have a very understanding partner. Hope you get the help you need and deserve. X

bearferret

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Re: Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 2:46 pm

I'm actually in Canada. I'm waiting to see the same OBGYN who delivered my kids and hoping he will be knowledgeable about this condition and be willing to keep at it until we find something that works. My current GP seems to have no clue how unbearable these symptoms are.

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 3:00 pm

Hope they sort you. My GP was worse than useless as well. Hugs and support. X

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Re: Any chance this could be something other than vulvodynia?

Post  sailor_moon on Thu Aug 21, 2014 11:31 am

There are many different health issues that give the same/similar symptoms as Vulvodynia. Vulvodynia can be caused as a symptom of a bigger problem going on.

Anything and everything from skin conditions to allergies (both contact irritants and food allergy), hormones, endometriosis, PCOS, low iron...so so many different things!

Have you got any other symptoms apart from vulvodynia? Does it get worse or better at different times of the month?
Have you had blood tests and ultrasounds ect?

Finding a decent doctor is the hardest thing. I'm up to doctor number 12! I am hoping he can fix me. I am undergoing a month long blood test to see what my hormones are doing. He is thinking my problem is hormonal as I have many other symptoms.

Do your research and see if there is a vulva specialist.
you can get a referral to. Find someone who specialises in vulva disorders.
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Re: Any chance this could be something other than vulvodynia?

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