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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

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


Current situation

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Current situation

Post  infinitelywondering on Sun Jan 28, 2018 11:24 pm

Hi everyone,

I just wanted to update my situation and see how you guys are.
I haven't posted in a while as things have been busy with my exams and studying to get into med school(lots of stress!!).

I've noticed that things have gotten much much worse for me lately, and i am feeling particularly stressed? Maybe it's what's causing my flare ups i don't know. I'm going to visit my gyno hopefully soon to try the anti depressants, physiotherapy and maybe some Botox injections.

I have experienced severe pelvic pain and perineum pain too which is quite new for me- I'm a little worried. I hope you're all well Smile

Lots of love and support as always

infinitelywondering

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Join date : 2016-12-04

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Re: Current situation

Post  sj17 on Sun Apr 29, 2018 8:38 pm

Hello!! Are you the girl who had the vestibulectomy the same day as me with Gabrielle Downey? I’ve changed numbers but if you want to email or PM me I’d love to chat!! Sarah x

sj17

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Re: Current situation

Post  infinitelywondering on Sun Apr 29, 2018 8:41 pm

Hi Sarah- yes it's me! I'd love to have a catch up, please send me your email address xx

infinitelywondering

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Re: Current situation

Post  Guest on Sat Jul 28, 2018 6:31 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! Replying to as many women as I can!

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Re: Current situation

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