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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: 6

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

I just diagnosed myself and SO happy I found this forum!!!!

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I just diagnosed myself and SO happy I found this forum!!!!

Post  Mamamontez on Thu Mar 12, 2015 5:31 am

Hi! Wanted to vent and get some input because I think I just diagnosed myself with Vulvodynia. My pain started 10 months ago and it came out of nowhere. At first I thought I was experiencing a UTI because that was the only thing I can compare it to. I went to the doctor and she prescribed me some antibiotics for my "Uti" but once I was done with the medication, the pain was still there. I thought this was odd. It felt like a constant, burning, raw, dull pain that came and went in waves. A few weeks later I went to my doctor and told her the pain was still there. She did a Pap smear and I had an ultrasound done to check my cervix, ovaries, uterus etc and everything came back normal. She had no idea what this pain could be so she referred me to a Urologist. The urologist performed several test including swiping cells from my urethra, checked my bladder. All of her tests came back normal. 10 months later im experieing this dull pain almost everyday and it comes and goes in waves. I went back to my doctor yesterday and cried to her. I broke down. I told her if this pain that I'm feeling isn't killing physically (because at times it feels like it is) it's sure as heck going to me mentally! My husband and I have been trying to conceive baby #2 since October and we haven't had any luck. We got pregnant so easily, one time, with my son back before this pain even started. my doctor prescribed me Nortriptyline (a 10 MG starter pack) She said this medicine helps with nerve pain and she wants to see if it could help. I can't wait to email her tomorrow and inform her of what I discovered!!!


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Re: I just diagnosed myself and SO happy I found this forum!!!!

Post  drivenbyambition on Sat Mar 14, 2015 5:01 am

I was diagnosed through a biopsy. Unfortunately, this condition is not exactly curable. I would not wish it on my worst enemy. Today my pain was quite unbearable. Hope you get some relief soon.


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Re: I just diagnosed myself and SO happy I found this forum!!!!

Post  Mamamontez on Sat Mar 14, 2015 5:14 am

Now that I have a name for it, I emailed my dOctor and told her what I diagnosed and she agreed that she thinks it's Vulvodynia even though she was completely clueless before! She referred me to OBGYN and I actually have an appointment with a Pelvic Pain clinic near my home that specializes and cures Vulvodynia! I'm on my 4th day of Nortriptyline and have been applying coconut water and lavender essential oil on my vulva area and have had a lot of relief! So happy to finally see a light at the end of a long, dark tunnel!


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Re: I just diagnosed myself and SO happy I found this forum!!!!

Post  Mamamontez on Sat Mar 14, 2015 5:15 am

coconut oil* not water!


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