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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


Vulvodynia??? What do I have?????

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Vulvodynia??? What do I have?????

Post  katie220 on Sun Sep 30, 2012 7:09 pm

Hi, I'm new to this website. I decided to go here because there just aren't very many people to talk to when it comes to this topic. I've been suffering from a "mild" (actually extremely irritating) burning throughout my vagnia for the past year and a half.

At first I thought I had a yeast problem, so I went to the store and bought some monistat. Didn't work (not surprising). The pain was so bad at first that I would cry. Luckily the pain became less severe over time but it's just this lingering, irritating thing that will never go away.

I have seen probably five doctors over a year and a half. They told me I had a bacterial problem and gave me round after round of anti biotics that never worked, not even temporarily. He did a "Q-Tip test on me that didn't hurt, so he told me a didn't have vulvodynia and kept saying it's "extremely rare" over and over again. Then a doctor prescribed me with boric acid suppositories that didn't do anything either. I have tried everything. I even quit smoking and drastically lessened my caffeine intake which hasn't minimized it that much.

Could any of you give me your opinion? Do you think I have vulvodynia or something else? At this point I am tired of seeing doctors and I just want it to go away.

katie220

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Re: Vulvodynia??? What do I have?????

Post  abovetheknee on Mon Oct 01, 2012 9:18 am

Hi Katie

Doctors do like everything to be black and white dont they? Your story so far sounds alot like mine, ie showing ones private parts to a wide selection of medical folk who ALL say 'well I cant SEE anything wrong, maybe a little red.....hmmmm have you tried anti fungal??' - very frustrating. Have you asked your doctor to refer you to a vulval clinic? do you have those in the states? Someone there should know about Vulvodynia. I dont think the 'q-tip test' is that great really - I had the exact same test & I really didnt feel it meant anything. The condition can vary so much from person to person, just because on a particular day you can touch it gently with a q-tip and its not agony does not mean you have nothing wrong down there. Vulvodynia can be touch sensitive or the pain can just spontaneously happen OR it can be a mixture of the two, which is what I have, & for a long time I thought because it didnt fit neatly into the various 'official' diagnosis it meant I must have someting else/I was a freak. Not so. And it can vary so much from week to week, day to day. So dont give up, dont take any more thrush/yeast treatments or any of that stuff unless you are sure it actually IS thrush, & insist on seeing someone who actually knows what they're talking about.

There are some treatments available to try for vulvodynia, and after reading alot of the posts on this site it seems to me that for some women, some of the treatments really do work. SO there IS hope, dont give up, read up on it, & then when you do get to see a specialist you'll be able to have an informed discussion & be able to work out what treatments you could try. I think its good you're trying to do something about it & that you have engaged with this forum - I wasted alot of time trying to pretend it wasnt happening & would go away by itself. I now think that is unlikely.

Best of luck to you, I really hope you shift it!!

abovetheknee

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Re:

Post  katie220 on Mon Oct 01, 2012 6:31 pm

Thanks for the reply and finally someone understands what I mean! I don't think the Q-tip test is all that accurate either. My doctor just relies on that to diagnose me and nothing else. I went to another doctor and she sent me to a pelvic floor therapist although I kept telling them it's not muscle tightness that is giving me an issue. I'm almost positive it is hormonal because I can track on a calender how bad my pain will be. It is 90 percent gone when I ovulate and progressively gets worse as I get closer and closer to my period. I have a feeling it is a low estrogen problem and my doctor put me on low dose birth control of all things. When I take them I have pain all month.

Do you know of a website I can go to that can refer me to a specialist? I live in the midwest and we don't have that many specialists around here Sad

katie220

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Re: Vulvodynia??? What do I have?????

Post  Alana3 on Mon Oct 01, 2012 8:37 pm

Hey Katie,

I live in Florida and just went to an amazing doctor here today- I feel like he's going to be awesome and he's a specialist. There is also another specialist in Orlando (I didn't like her) and another one in D.C. and New York. This is definetely something that can be made better. And acupuncture has helped me a lot. Message me if you need any advice or the doctors names that I have used. Be careful I was put on 27 scripts and acycolvir which is a herpes drug, I don't have herpes! They said it could help. This doctor said it was BS. So be careful, and if it doesn't sound right it probably isn't. Don't put lots of stuff up there it irritates it worse.

Alana3

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Re: Vulvodynia??? What do I have?????

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