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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


Wife with Vulvadynia scheduled for surgery

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Wife with Vulvadynia scheduled for surgery

Post  Mitch on Wed Jan 11, 2017 8:31 pm

Hello, I am new to the forum. I live in Florida and I am grateful for the information on this forum. My wife is scheduled for surgery in a few weeks for a vulvar vestibulectomy but received a second opinion today and is obtaining a third opinion next week from a doctor Jay Trabin in West Palm Beach. She has provoked vulvar vestibulitis which she has always had with some pelvic floor muscle spasms and atropic vaginitis (Thinning of the vaginal walls and decreased lubrication likely due to the removal of her ovaries about 5 years ago). She also had a full preventative Mastectomy about 6 years ago and continues to experience pain and numbness so she is naturally wary of another surgery for he vestibulitis. We learned about Dr. Trabin from this site and also from the nva. She is meeting with him on Tuesday next week. She is scheduled for surgery Feb 1st with Dr. Kurt Christopher who is
originally from New York but recently relocated to Florida. He does not have a permanent office and is a little new to Florida due to his relocation but he seems very knowledgeable and experienced with this surgery. He indicated that there is a gamut of things that can be tried but are not likely to help based on her history and said she would really need the surgery. He offered that she try the Capascian ointment which contains a percentage of extrememly hot peppers but we did not want to go that route We are looking for support and advice from anyone willing, especially in Florida as we go through this journey together step by step and decide the best course of action. She saw a Doctor Carugno in Miami today who suggested pelvic floor exercises, oral medications and creams and surgery only as a last resort. She tries some of this on a limited basis years ago with no significant improvement. This sounded like the things Dr Christopher said would probably not work. Dr Carugno said the surgery only had a 50 percent success rate whereas Dr Christopher said it was more like 95 percent with intimacy practically pain free after treatment. As I recall, at least one person from the forum has had surgery with Dr. Trabin who she is seeing for the final opinion next week. We would really appreciate any support and guidance anyone can provide for us. Thank you!

Mitch

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Re: Wife with Vulvadynia scheduled for surgery

Post  ellenb on Tue Mar 28, 2017 10:56 pm

Mitch did she have the surgery? How is she doing. I too have suffered for many years. I'm having 3 mona lisa thearpy treatments had 1 but not much of a difference. My Dr. Suggessted surgery as a last resort but I'm very wary!! I have had some luck with gapapentin orally. Keep us updated

ellenb

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Try Everything First

Post  amyhp on Thu Apr 13, 2017 7:39 pm

Hi, I want to encourage you and your wife to try everything before going for surgery. I tried everything and did not get better, but surgery made me worse. A lot of women get relief from surgery, but a lot of women do not as well. I am so thankful I exhausted every option before surgery because regretting the procedure is absolutely awful. I get that living in regret gets you nowhere, but when you feel the pain constantly those emotions are triggered. Is your wife in constant pain or is it just pain with sex?

amyhp

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Re: Wife with Vulvadynia scheduled for surgery

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