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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 …

Comments: 0

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

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


Surgery in 2 weeks!

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Surgery in 2 weeks!

Post  amtali on Tue May 29, 2012 3:31 pm

I am new to this whole forum-writing thing, but I have jumped on the bandwagon in the hopes that I may be able to help others.

I am 23 years old and have suffered from vestibulodynia for over 4 1/2 years. My boyfriend of over 5 years has been with me from the start of it all, and I could not be more thankful for him. We actually had a normal sexual relationship for about 6 months before symptoms started presenting themselves in Fall '07.

Basically, I had localized pain at about 6-8 o'clock during intercourse and upon touching the area. It took several months and doctors before I was correctly diagnosed. I was first given Lidocaine .05% to use before intercourse. 4 1/2 years later- I'm using 5% and it's still not always enough.

Needless to say, here are the treatments I have tried:

Lidocaine
topical estrogen
topical steroids
Amitriptyline
Nortriptyline
Gabapentin
Venlafaxin
Physical Therapy/Biofeedback


None have worked well, so I am opting for surgery.

On top of my initial pain, my pain began to spread over the years, presenting itself at 3 o'clock. For the past 2 years, I have also been battling with something called a fissure, or a reoccurring cut, that keeps opening itself at 11 o'clock during intercourse. The specialist I finally went to, Dr. Libby Edwards in Charlotte, NC, said that these are common with vestibulodynia, but they do not know the exact link. Nevertheless, the only option left for me was surgery, so I was referred to Dr. Bernard Taylor in Charlotte, NC. (Keep in mind, these doctors are 4+ hours from where I live.)

The surgeon examined me and determined that I was a good candidate for a vestibulectomy and hymenectomy (to remove left over hymen tissue that could contribute to the source of the nerve pain.) I am very anxious about the surgery, but am hopeful that it will be worth it in the end.

I am very open to talking about my issues, the surgery, etc, so PLEASE ask any and all questions an I'll try to keep you guys posted through my journey!

Thanks!

amtali

amtali

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Join date : 2012-05-29

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Re: Surgery in 2 weeks!

Post  junobug85 on Fri Jun 29, 2012 10:55 pm

Hello - my story is extremely similar. The doctor I am seeing now says that he stopped doing the surgery because the success rate was low but then some places I read it has the highest success rate. Please keep us updated on your story! Best wishes

junobug85

Posts : 14
Join date : 2012-04-22

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