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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


CONFUSED !!!!!!!!!

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CONFUSED !!!!!!!!!

Post  helpme123 on Fri Oct 14, 2011 6:20 pm

I am not sure if I do have vulvodynia, I need to rule out everything , my story ....

I was taking Nytol , OTC sleep aid for years every nite for sleep, and back in July 2009 , for the entire mth of August and I stopped taking the Nytol , 2 weeks after I started to have burning/itching on outside of vulvo area close to the urthea area , I didnt pay too much attention why it was dng this , by the end of August I was back home from my vacation and my family Dr gave me a steriod cream , I applied it one day and it was gone away , but at the same time I started back the Nytol , and nevcer had a promblem after, UNTIL went back on vacation to Florida this time for all winter , I just quit my job and was now semi retiring so I decided to stop taking the Nytol for good, this was Dec 2009 , again same thing happened to me after 2 weeks, by the end of the Mth it got really bad , I was in extreme pain , I couldnt wear any clothes at all , it was as if I was sitting on top a stove and someone threw acid on an open womb , I couldnt sit on it , it burned/iched, and at times it stung. I went to see at least 5 GYN , went to ER , seen other Drs at Medical clinics , while I was on Vaction , they did every test under the sun , ruled out anything and everything , I never once thought Nytol was the culprit . At every Vaginal examine it was extremly painful by any touch , I was given antibiotics for no reason , only by assumptions , they thought it was vaginitis , etc.. , I was given several types of steriod creams, Hydrocodone (80 pills) , I tried Estrogen cream for 7 weeks, I was on Gabapetin for 2 weeks, and a Benzo Klonopin , well as time went by I was finally able to wear jeans , had no problems sitting , walking as b4 I couldnt even walk it was so bad. It was abt 2-3 mths later it seemed to get better , I had no problems getting a pelvic exam , touching that area , BUT was getting a different kind of pain as I was on Bnezo Klonopin and was getting now burning sensations off and on from one location to another , come and go , but no stinging , but was still itching and at that time I had NO problems scratching that area when needed . Fast forwarding now , I was told to stop the Benzo Cold Turkey after taking it for 4 1/2 mths , and things hit the ceiling , I was in severe withdrawl, well now its 18 mth slater and I still have withdrawl symptoms as I seen a neruologist he said Benzo deplete the GABA and changes the Brain Chemistry. Well heres my confusion now , since Decemeber of 2010 I started to get that stinging back down there and its so bad that when I wipe with Toilet paper , just by a slight touch it triggers stinging , but it triggers stinging all over my body NOT just there , it also triggers a headache, weakness, pressure around my throat , and burninging all over my body , as these symptoms are not always cuased by any triggers its mostly like this on my body all over as its caused from Beno Withdrawl, or its part of my recovery. So my Question is this do having Vulvodynia cause your entire body to sting or burn by any sense of touch on the vulvo area, I dont have any internal issues as I did the first time , its all around the surrounds of the vulvo area. I am worried I had vulvodynia the first time and I recovered from it and now its back again , or its caused from what the Benzo did to me. Any thoughts , I would appreciate it . A final note I dont have any problems sitting , wearing tight jeans , or internal problems , but my worst symptom is stinging extremly bad , it does come and go with intensity , and a few times its hardly noticable unless its triggered !!!! at times its nothing at all but until I scratch anywhere that area or wipe with Toilet paper it triggers the symptoms. Is it Vulvodynia? Thank you for reading this .

Sincerly
Helpme123

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Re: CONFUSED !!!!!!!!!

Post  jules on Sun Oct 16, 2011 11:55 pm

Hello,

Your story is very similar to probably most of ours. I saw several doctors and tried several creams and gels before i was diagnosed with vulvodynia. Typically, a biopsy of the vulvar skin is taken to rule out a skin condition. Have you had that done? Vulvodynia is a nerve disorder. There are different triggers for different people. Usually most are triggered by sitting, working out and sex. These are my triggers anyway. Nevertheless, for me it is unprovoked so the burning pain is almost always present. I have received the most help from a pain clinic. Gabepentin can be very helpful for the burning. Doctors also prescribe Lyrica, Cymbalta and Amitriptyline for this condition. I had a horrible reaction to the Amitrityline. I'm currently on the other three meds. Different meds work for different people. This disorder can come and go. Years ago i had pain for almost a year and a half and it disappeared one day. It was brought on by a yeast infection. Now 20 years later, it came back and the pain is much worse this time around. Have you visited the site National Vulvodynia Association? They have a lot of information on this disorder. I'm glad to hear you are able to walk and wear pants etc. I have heard a number of women talk about itching. I don't have any itching. But, the creams and gels made my burning much worse. I recommend find a gynecologist to at least get the correct diagnosis. Meds can help with this disorder. I also recommend using fragrance free toilet paper and laundry detergent. Also, when you pee, have a little spray bottle and spray cold water on your vulva. that helps get the acid from the urine off of your skin. Cotton underwear are also recommended. Get to a doctor who has knowledge about this disorder. I don't know anything about the meds you were on. I had the same experience after i started and stopped Amitrityline and after trying to get off of Paxil...horrible withdrawal symptoms. Women also do physical therapy, nerve blocks and acupuncture. I've done them all. It's quite a battle. I have learned ways to try to keep the pain down. Right now, my Vulvodynia is tolerable. Good luck to you!

jules

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Re: CONFUSED !!!!!!!!!

Post  mmorgan on Tue Oct 18, 2011 1:32 am

Jules,

I'm intrigued by your comment. How old were you when you first had symptoms of Vulvodynia? You said it lasted for a year and a half then came back, how long have you had it going on this time around?
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Re: CONFUSED !!!!!!!!!

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