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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


New Here ~~~~

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New Here ~~~~

Post  daisiesfordays on Mon Aug 04, 2014 5:07 am

Hi all,  I love you 
I'm new here!
I'm a junior in college and was recently diagnosed with VVS. I had been taking birth control for the past year and 2 months before getting diagnosed, since it was the only thing that worked for my skin. Of course, I'm one of those people who hates hates hates blood, so I would always skip the sugar pills and start a new pack.
I got a yeast infection once, and didn't think much that the applicator hurt to use. The YI went away, but I went to gynecologist anyways. When she swabbed me, I nearly fell off the table! She was surprised and asked if I had any problems with tampons (I hadn't in the past).
Long story short, YI came back because of antibiotic she prescribed me. It was awful and the gynecologist couldn't even examine me because just touching the vestibule with a q-tip set me off the table.
By now, I'm on my third doctor. I just finished my period (had stopped taking BC pills) and the itching came back. I was getting really tired of taking Diflucan, so I looked for some home remedies. I tried Gentian Violet, which only ended up burning my vagina. Really fun! (I think that's why I'm having issues now).

I finally found a specialist in my city, nonetheless. I went to visit him, and he diagnosed me with VVS and secondary vaginismus. He said it was due to my BC pills. So basically, I can never take those bad boys again. I've been using estrace cream which helped a TON, but ever since I started on spirolonactone 2 days ago, it's been acting up again. I just feel burning on the left side, but it's not ALL the time? And it's not super painful, just annoying! Any advice?
Thanks! Nice to meet all of y'all

daisiesfordays

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Hi there!

Post  907hopeful on Mon Aug 04, 2014 10:51 pm

I just got a note that you posted on one of my old posts. I have not been on this forum for a while. I don't have time to write my whole story out, but you might be able to find it if you search for my old posts. In a nutshell I have vulvodynia which started out as irritation when I used tampons and through multiple creams and treatments later ended up as severe burning and vestibulitis. I found a dr in AZ and spent lots of money to travel and see him. He has been an absolute life saver. He retired from the Mayo clinic and opened up a clinic just to treat chronic vulvar/vaginal issues. I am on month 4 of treatment and would say I feel 75-80% better. Google him - Dr Fowler in AZ. His website seems a little quirky (more like a business than a dr's office), but he knows his stuff! He has me on a regime of anti-fungal, anti-bacterial and estrogen creams. Send me a message if you want to know more. And keep your head up. This is a nasty disease and it is easy to get depressed and feel alone and isolated. Ive joined another chat board that has been very helpful and has pulled me through this mess. Having a support network is priceless!

907hopeful

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Re: New Here ~~~~

Post  sailor_moon on Tue Aug 05, 2014 8:54 pm

Welcome to the forum! Smile

Do you have any other symptoms besides the vulvodynia? How old are you?

What makes the doctor say that BC pills caused the problem? Has the doctor done a 4 week blood test? Doind a blood test once a week to see what your hormones are actually doing? Hormone imbalance can cause a lot of issues, especially if you have come off the pill. I am just about to go through this test nyself after seeing over 10 useless doctors who would not check my hormones.

If it is on your left side only it may be nerves, or it could be to do with an internal issue. There are so so many different things that could be causing it.
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Re: New Here ~~~~

Post  daisiesfordays on Wed Aug 06, 2014 2:26 am

907hopeful -
I'll definitely send you a message! I go to Dr. Brooks at AZ Vulva Clinic.

sailor_moon -
Thanks!
Nope, this is it. I'm 19. I had never had any issues before I took BC, and after stopping it for a month and applying Estrace cream to the opening, the q-tip test no longer hurt, just felt a little sensitive when I was swabbed, but no way like when I almost fell off the table the first time!
I went in yesterday, (his nurse had seen me about 3 weeks ago and noted that the skin was looking much better) and he noted there was a lot of redness and tenderness now. I think it may be due to my taking of spironolactone (anti-androgen). It was only after I started taking it that I started feeling uncomfortable again down there (after a month of feeling GREAT!!! I was able to use the 5th dilator in the pure romance set with very little pain, just some discomfort from the stretching) and I was doing some research today, it seems that the vestibule needs a balance of testosterone/estrogen, and my theory is that my testosterone level was already low, so the anti-androgen therapy (again, for my face  tongue ) could've reduced it so much that it was near 0! I'm debating getting a hormonal blood test done when I go in to get a shot at my GP on thursday. Although, am going to go see specialist tomorrow, just going to request the estrogen/testosterone compounded cream. He seemed perplexed and couldn't figure out how it could be the spironolactone, but apparently it's a new procedure to do a compounded cream of both testosterone and estrogen.
Oh, before I forget -- he examined me and said the sore spot on the left is my muscles spasming, so was prescribed a valium suppository. Helped a TON.

daisiesfordays

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Re: New Here ~~~~

Post  emalita on Tue Apr 05, 2016 1:56 pm

907hopeful wrote:I am on month 4 of treatment and would say I feel 75-80% better. Google him - Dr Fowler in AZ. His website seems a little quirky (more like a business than a dr's office), but he knows his stuff! He has me on a regime of anti-fungal, anti-bacterial and estrogen creams. Send me a message if you want to know more.

907hopeful - How have things been going since seeing Dr. Fowler? I just started week three of his treatment.

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Re: New Here ~~~~

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