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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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!!!

Mamamontez

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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.

drivenbyambition

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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!

Mamamontez

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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!

Mamamontez

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

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