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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


New here . . .

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New here . . .

Post  irwinswife on Fri Feb 22, 2013 12:39 am

My name is Tina, and I believe I have vulvodynia. My vulva is always very irritated and itchy. I also have interstitial cystitis (have had it for over 20 years). I live in the Atlanta area.

irwinswife

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Re: New here . . .

Post  meelie on Sat Feb 23, 2013 1:22 am

Hi Tina, just saw your post. I live in Barnesville just south of Griffin north of Macon. I was started burning Sept. 4, was diagnosed in October.
As far as I know I don't have IC but everything I read says they seem to go hand and hand. My came after bouts with IBS and then some awful constipation.
I went to two Dr.s, one a "specialist" at Emory and the other here in Griffin. I finally gave in and went to my regular gyn thinking she can't be any worse. I think she actually knows something and I know she cares. She has me on Neurontin 300mg at bedtime and Flexeril two times a day.'I also take Xanax at night to sleep. I have been on these for 7 weeks now and so far I am better, as long as I take my medicine. I came off the Neurontin for 2 days thinking it was causing a skin problem on my face and the pain came back horribly. It doesn't completely go away but it at least takes the edge off and actually goes away as I sleep. Comes back as the day goes on. I truly believe it is a result of bunched up pelvic floor muscles and or a pudental nerve being pinched. I had a horse riding accident 4/30/2011 and broke my left pelvis and have been sitting on my right buttock for almost a year and a half when this started. At least this is what we are working with. I also have been going to my chiropractor since October once I had the guts to tell him what is wrong and asked if he could help. He said he thought so.
Anyway, I'm going to keep this up for at least 6 more months before I try and come off of any of the medicines.
Tell me about yourself.

meelie

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Re: New here . . .

Post  Sadgirl on Mon Mar 18, 2013 1:05 pm

For starters Tina, as well as Meekie, I'm so sorry your both dealing with this and I empathize greatly. Sad I have been dealing with the issue of IC and pelvic floor damage for more than eight years. I havent figured out which it is linked to I was raped around that time, and shortly after i had my first child whom was breach and i had to have an emergency c-section. In addition I suffer from IBS and have since puberty, the Dr's also did some additional testing due to having numbness, pain, tingling in my legs and the extent of pain I have in my lower back even without intercourse and also found I suffer from arthritis. Which was a little surprising, not at all what I was expecting I guess it's common to some degree but I'm only 31 and have arthritis like one would see in someone 45+ not my age. There's nothing really they could do just offer me pain medicine which is not what I want or would fix the problem so I opted not to. I have done physical therapy for years, and medications, stress release (excersise, meditation, stretching, hobbies, etc), but recently had a consult with another physical therapist that specializes in IC and pelvic floor damage and said she would work on internal therapy? My past IC and pelvic floor damage therapist worked on stretching, excursuses, and a little adjustments like a chiropractor. I have found much relief with message therapy, too bad my insurance won't cover it even when written as a prescription. I have no idea what this means and quiet honestly am pretty nervous to guess. I'm wondering if any of you have tried this, what it entails and has it been successful? I'm a very modest person
and this condition makes that difficult to begin with, as scared as I'm if this could help I
might try it, but to go through something that sounds pretty humiliating and have it not help I don't know I could handle that well.

Sadgirl

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Re: New here . . .

Post  irwinswife on Mon Mar 18, 2013 2:22 pm

My apologies for not getting back sooner. I did do internal massage with a practitioner for a while, and then the insurance wouldn't pay for it anymore. The internal work I had done just involved someone with a gloved hand inserting a finger into the vagina, pressing, and then releasing. I guess that would be myofascial pain release?

Sadgirl, it's just similar to having a pelvic exam. Do pelvics bother you, either physically, modestwise, or both?

irwinswife

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Re: New here . . .

Post  meelie on Mon Mar 18, 2013 2:29 pm

Don't think I could handle the internal massage or stretching. What kind of other massage do they do? Is there anything I can do myself and get my husband to do. I just can't afford to go to a PT we are both on Social Security and Medicare and they don't pay for much.
Do you know anything either one of us can do outside the vagina? Question

meelie

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Re: New here . . .

Post  Alana3 on Mon Mar 18, 2013 2:41 pm

Meelie,

I also had a horseback riding accident and hurt my right hip so everything on that side is jammed. Ouch! You can get a foam roller and roll on the side that hurts, it may help release it, they can be purchased at Sports Authority for like $20. But the internal pt helps a lot too, if you can stand it, you can get a vibrator or dilators and trigger the muscles yourself (I read that you couldn't afford a therapist). It's gonna kill at first, but its worth it. Also, an exercise you can try is to breathe out and stick out your stomach as far as it can go, it releases the muscles and feels so good!!! Try getting a prescription for valium and putting the pill in your vagina, that may help too! Just don't get too hooked on prescriptions and do too much at once, you won't know what's helping (or hindering) your pain.

Alana3

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Re: New here . . .

Post  Applejax on Tue Mar 19, 2013 12:41 am

Sadgirl - what kind of arthritis do you have? I have rheumatoid arthritis and take medications to stop the progression of the disease and sort of keep it in remission. I don't like taking the meds but it's essential to keep it from getting worse. I'm also in the process of figuring out which treatment will be best for my vulvodynia. Right now, I don't have a definitive diagnosis or specific treatment plan. The doctors I've seen haven't agreed on what's causing my pain. Physical therapy was recommended by one of them. My husband naively said, "Well, at least it won't be invasive." I then explained to him that it isn't your normal 'run-of-the-mill' PT. He was pretty shocked about it. To be honest, I'm not sure I could handle it either. Right now I'm not too willing to endure any pain. I decided back in October that I was done with intercourse, so, pretty much done with pain until I decide on what the treatment will be.

Applejax

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