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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


I'm New! and recovering from surgery

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Re: I'm New! and recovering from surgery

Post  shanabanana999 on Sat Mar 08, 2014 1:19 am

Yes, there is a list on nva.org but you do have to join which costs $40ish but if you don't have the money you can put in a request to have the fee waived

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Re: I'm New! and recovering from surgery

Post  lonelyone48 on Sat Mar 08, 2014 1:46 am

Ok thanks!

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sat Mar 08, 2014 1:52 am

Wow, your doctor sounds awesome!
Unfortunately, in Canada, I can only go to a gyn with a referal from my family doctor. The gyn she sent me to seems to understand this stuff very well, but I've had so much difficulty with him over the years because he doesn't communicate well, can be arrogant, and his staff is even worse.

At one point, several years ago, I went back to my family doctor and asked if she could refer me to a different gyn. I'd had enough. And she did. Unfortunately, that new gyn knew nothing of vulvodynia, and I got bounced from doctor to doctor, wasting time and left to feel like I was some overly sensitive crazy woman.

So exasperated, I finally went back to my original gyn. He and his office seem to have improved a great deal regarding relating with people, but still no where near what you're describing! I mean improved means now if I call and leave a message, they will actually call me back MOST of the time. And when I called to ask questions before my surgery, they actually put me thru to the doctor the second time I called. This is a huge improvement for them.

For me to feel comfortable, I really need to have more information.. or at least to have been told some kind of general thing like 'your body is going to do strange things for weeks after surgery, but don't fret about it unless you're running a fever or... whatever.'  But I got none of that, and on good days, I figure it's all gonna be okay. On my bad days I fret quite a bit about what I don't know/understand.

Chrisk

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sat Mar 08, 2014 1:58 am

Does the list of specialists from nva cover only the US? Or does it also include major cities in Canada and/or other countries?

Chrisk

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Re: I'm New! and recovering from surgery

Post  shanabanana999 on Sat Mar 08, 2014 6:18 am

Chrisk,

That sounds overly frustrating! It was really hard to get in to see this doctor but once I finally did I have had first class treatment. They can't/don't always call back right away, but  they always do and if I need something they make sure that I have it.

I'm not sure about the list, I actually found out about it from my specialist so I didn't need to search through it, or even join the association. There are a lot of helpful articles/pamphlets on the website though if you have time to search through them and you don't have to pay a dime. I know there was another place that I ran across a way to search for doctors that had knowledge of vulvodynia but I can't think of it off the top of my head--I will do some looking/thinking for you. I truly think it is essential to have your doctor available to you, especially for something like this-where there aren't many places where you can look for valid information, etc. and I am sorry that your doctor is just not providing you with this.

I did find the website for the Canadian Foundation for Women's Health which I thought was good but I can't post the link (too new, but try googling it!) and I followed a link at the bottom, the mvprogram.org. It seemed similar to the nva.org, in fact they used NVA as a resource. You may try contacting them and asking if they have a list of doctors in Canada that are recommended.

Are you noticing any of your odd symptoms going away? I would say that it is completely normal to have odd poops for a while after a surgery in the rectal area and also for a little while after taking pain meds too, but they should straighten themselves out after a while, probably a good while. I still feel exhausted and can't bend over! My rule of thumb with worrying about things is, a) if it's getting noticeably worse, or b) if it is persistent, bothersome, and not improving, I will call my doctor.

shanabanana999

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Re: I'm New! and recovering from surgery

Post  Alana3 on Sat Mar 08, 2014 3:40 pm

Dr trabin in west palm beach florida. I think everything you're feeling is normal just wait til you're fully recovered until you start to worry...

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sun Mar 09, 2014 2:35 am

shanabanana999 wrote:
I did find the website for the Canadian Foundation for Women's Health which I thought was good but I can't post the link (too new, but try googling it!) and I followed a link at the bottom, the mvprogram.org. It seemed similar to the nva.org, in fact they used NVA as a resource. You may try contacting them and asking if they have a list of doctors in Canada that are recommended.

Thanks! I found the websites you mentioned. That's exciting! I'll give a call on Monday to ask about their programs and if they have a database of specialists, etc.

As for my symptoms, the burning pain is slowly calming down, but the odor is getting worse. I've had a day or two now when I otherwise feel pretty good, but am still getting fatigued easily. I'm less worried as time goes by.. starting to look forward to the 6-week mark (I'm not quite half way there.) so that I can maybe start physio and get back to it!

Thanks to everyone who's responded to my questions/comments/concerns. Your responses are so very much appreciated! I can't thank you enough.

Chrisk

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Re: I'm New! and recovering from surgery

Post  Alana3 on Sun Mar 09, 2014 1:38 pm

Honestly I wouldn't change doctors now. You made the commitment to be with him others are going to be reluctant to see you until you've healed.

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Re: I'm New! and recovering from surgery

Post  Chrisk on Mon Mar 10, 2014 12:09 am

yes. agreed

Chrisk

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Re: I'm New! and recovering from surgery

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