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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


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

My journey so far...

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My journey so far...

Post  xlmc89x on Sat Mar 24, 2012 8:45 pm

My pain started fairly young. As I began to go through puberty and start my menstrual cycle, I struggled because unlike my peers, I found myself unable to wear tampons. Summers were difficult, embarassing, and frustrating. But it was nothing compared to the battle I face now as an adult.

When I became sexually active I had a difficult time because penetration was excrutiatingly painful–even manual penetraton causes that burning, painful, itching, scratching feeling that I felt when I tried to use tampons. And sex obviously was no picnic.

I lost my virginity at age 18 to a boy who was comprable in size to myself– 5’3 95lbs– the pain was noticeable but not crippling. Because he was not the most well-endowed, I was able to have sex even through the pain. Although I never found it particularly enjoyable, I was able to do it. But after a few months of a not-so-great relationship, we broke up and I met the love of my life, John. And four years later John and I are still together against all odds. We connect emotionally and intellectually and every day I feel like the luckiest woman alive. But our sex life is difficult.

In 2008 I first started looking for answers. A gynecologist tested me for Endemitriosis through an exploratory Laproscopy and found nothing. So I was quickly back to square one. After searching and a lot of confusion, I explored treatment options for Vaginismus–believing that to be my condition. I used dialators and other techniques and still was left no closer to finding relief.

In 2010 I began seeing a specialist at Boston Medical Center who told me that without a doubt I had Vestibulitis. He tested my blood to see what was going on with me and discovered that I have extremely low levels of testosterone. So for over a year I have been taking a topical testosterone gel and using a numbing solution to try to have a normal sex life. (yeah right!) I cannot take any form of oral contraceptive either to make sure that my body is not overpowered by estrogen.

A month ago I went in for another follow-up appointment and laid down the line. I am still in pain. It has been over a year and the testosterone is not helping me. His offer to me was to perform a Vestibulectomy where he would basically remove the inflammed tissue. But I don’t want surgery. Not if it’s not necessary. I feel like there are more answers out there waiting for me and that it is my responsibility to take charge of my own life and explore other options.

I need answers. There has to be some reason I have this. If I get the surgery, won't the tissue just grow back still inflammed if I don't deal with what is CAUSING the problem? I need to know more about this condition and I am interested in learning what worked for others in my situation


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Post  xlmc89x on Thu Apr 19, 2012 8:42 pm

So, after my docotor (Ricardo Munnariz at Boston Medical Center) recommended the vestibulectomy I decided that instead of putting myself through that pain and time off of work I wanted to get a second opinion. So I made an appointment with the Women's Health Center at Harvard Vanguard in Burlington where Dr. Elizabeth Stewart works out of. My appointment was with Katherine Bell N.P. and I really liked her.

Thus far I've been taking Testim to build up my testosterone but my pain is still there and my drive hasn't increased either. But Dr. Bell did an exam and I held a mirror so I could see myself and she showed me that most of my skin was healthy except for a small area of inflammation. She prescribed Neurontin or Gabapentin at 100mgs increasing every 3 days till I hit 1000mgs where I will go in and reasses. She also wanted me to start physical therapy but unfortunately the wait list for that has me waiting until June so I am just going to work with dialators on my own. But she said the vestibulectomy surgery can often do more damage than good. And that it was unneccessary in my case.

Right now I feel like things are looking up and I'm really happy about it. I didn't want the surgery unless absolutely necessary and I'm so happy she didn't recommend that for me.

Anyone who lives in the New England area should seriously consider taking a trip to Burlington to see the Vulvovaginal Specialists there because they are amazing. I'll update with my progress!


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