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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


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


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Post  blessed on Fri Mar 09, 2012 11:17 pm

hello. this is blessed. i live in toronto and since Dec 19th, i began with some pain in my vagina that started like a urine infection but as each day went by got worse. i never had a yeast infection but that's why my doc said it was. gave me some antibiotic but before i could finish taking them, i started having discharge, tormenting pain inside my vagina and pain, sensitivity and soreness on the outside. even worse, my majora labia were both so swollen that they were squishing the labia minor and that caused alot more pain. i have been back and forth to the doctors and they keep giving me all these different creams and meds but nothing worked. i cannot sit. walking is possible only without an underwear ofcourse and with both legs wide open! i can feel the pain down there with just passing my hand over that area, not even touching it. i feel as though the skin is being stretched out and everyday its getting worse. i finally got to see a gyne and after she went through all the reports and taking a look down there, she said that she could not see anything wrong. she told me to take diflucan for 3 weeks. now i had used this before and it didn't work but considering that i am dying in pain, i thought i'd just try it again. nothing happenned. i went back to see her today to get some urine/blood results. she said all came back normal and that i may have endometriosis (even though i have no symtoms for that) and i would know because i had it 9 years ago but after having surgery, i no longer had the problem. these pains that i am currently having are absolutely not what i had when i had endometriosis. so i really don't think thats the problem. also, everytime i mention to a doctor that my labia is swollen and not normal, they would take a look but obviously with me lying on the bed with my legs up so the area then looks relaxed and they would not be able to see the swelling so they claim its not swollen! this has been most frustrating as i know what i look like down there and i am telling you its very swollen to the point, i have to sometimes use my fingers to part the labia majora from the labia minora just to get some ease. i feel so hopeless and fed up because the way it looks, i may just have to live with this. i already live with the terrible pain of a slip disc that is 24 hours a day every day pain. i cannot work, cannot get pregnant, do not have any kind of social life since i can't sit, stand, or walk without pain and now this!! i began to get so desperate that i started searching google and when i came across these women talking about the same symtoms, i could not believe it! i mean this is something that exist! i am not crazy! its so sad though, that we have all the medical expertise right here in canada, and yet no one could help us. how does one go on in life living with this? how does a wife accept never functioning as a woman to her husband? is there anyone out there???????????????


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So sorry

Post  LizLemonny on Sun Apr 15, 2012 6:35 am

I feel for you I love you

One thing I read in your account did mean something to me - the stretching feeling in the skin and that it is very thin... this could be from Lichen Sclerosus for which you can get certain treatments and I don't think it shows up in tests very well, doctor has to think of it from looking at the area (it can look pale in patches).

Rest of it sounds like Vulvodynia so hopefully this forum will be of use to you.

Doctors do find this very difficult to identify and you may get some who will be minimising about it; something we all agree on!!!!!


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