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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


a long painful journey

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a long painful journey

Post  Applejax on Tue Jan 29, 2013 2:32 am

I just found this forum tonight. I went looking for it in hopes of getting much needed support. I was introduced to the term "vulvodynia" a few months ago by a good friend who was determined to find me some help. After learning more about it online, I pretty much decided that it must be what I have. I located a specialist and, during my initial appointment, had my first ever validation of my pain being real. I felt so relieved that someone actually was taking me seriously. He said I had multiple physical issues. The most pressing at that time was a skin problem that had developed due to low levels of estrogen. He said the skin at my vaginal opening was tissue paper thin and tore with hardly any pressure applied during the cotton-swab test. So, he started me on a estrogen cream and has since removed my IUD which he said was likely causing the estrogen depletion. At my return visit, he completed the physical exam and has diagnosed me as having a congenital defect. Basically, he says my entire (internal) pelvic anatomy is the size of an 8 year old. He says he is convinced this is the reason for my pain and the only viable treatment is a surgery called perineoplasty surgery. He says the problem is so "obvious" that he can't believe I've never diagnosed before. "Obvious" to him, anyway, but not to the 8+ doctors I've seen over the past 18 years. He's a specialist, so maybe he really knows what he's talking about. It's all a bit much for me to take in. I'm glad to finally be in a place where I am emotionally strong enough to be pursuing an answer. I have been dealing with dyspareunia for my entire marriage (18 years) with a fairly non-supportive husband and have always been told by gyn doctors that there is nothing wrong with me physically. So, now I finally feel validated. Great feeling - but is also creating an enormous amount of anger inside me. I'm wondering how the rest of you have come to terms with anger toward a medical community that is mostly ignorant as well as husbands who all too often believe the medical community.

Applejax

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Re: a long painful journey

Post  Alana3 on Tue Jan 29, 2013 12:06 pm

Can't help with husbands touchstone department I am alone in lol but the medical Yup that's something I do understand. I used to be miserable, depressed, furious at each doctor who told me there was nothing wrong and gave me an antibiotic and said take this. But like you I found a specialist and I an pretty much cured so now I channeled the depression and anger into gratefulness that there is someone who can help me get better- and I did, but thru my recovery (from a different surgery then you) I was still terrified and depressed. But now im feeling so much better that it doesn't matter I think now you need to focus on how this particular doctor can help you and hard as it may be forget the other docs they don't matter anymore. Burning do understand where you're coming from are you doing the surgery?

Alana3

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Re: a long painful journey

Post  Applejax on Wed Jan 30, 2013 5:42 pm

Thanks for your reply. I'm not sure about the surgery yet. I still need to meet with the surgeon to find out more. That will also serve as a second opinion. Assuming he also says that's what I need, I still don't feel ready for it yet. However, I know it will be necessary before I'm willing to resume intercourse. I reached the end of my tolerance for the whole sex thing back in October. So, either they (the doctors) figure out a way to eliminate the pain, or else I'm through with sex. This has taken such a toll on me that I honestly have no desire for sex. I think I would be quite happy never having to have sex again.

Applejax

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Re: a long painful journey

Post  Alana3 on Wed Jan 30, 2013 6:40 pm

Haha I said the same thing I don't know what your surgery would entail but mine was worth it tho I haven't had sex yet but im assuming I can because I can use my vibrator. I have an infection I think now and im just done with everything vagina related lol of you aren't ready don't do it there's probably something else to try?

Alana3

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Re: a long painful journey

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