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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

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: 2

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

Anyone with Vulvodynia and tingling feeling in clitoris? Plus vestibulctomy success

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Anyone with Vulvodynia and tingling feeling in clitoris? Plus vestibulctomy success

Post  Hopeitworks on Sat Sep 16, 2017 7:03 pm

This is going to be a long post and I thank you now for reading it. But I need some advice! My vulvodynia started 10 years ago along with nerve pain in my thighs. I never connected the two until recently. I was scheduled for a vestibulectomy July 28th. On July 20th I started to get what I think persistent genital arousal symptoms (PGAD). I felt constantly aroused for no reason. Even achieving orgasm didn't relieve the feeling. I thought maybe this was connected to vulvodynia, but since I have vulvodynia for 10 years and never felt these symptoms I didn't think there was a connection. So I thought about what changed in my life and I remembered I stopped taking Spironolactone (I take it for acne and oily skin and it works by lowering testosterone levels, been on it for 8 years). I discontinued Spiro on July 4th and PGAD symptoms due to my testosterone levels being really low, and arousal (mostly just tingling in my clitoris)started July 20th. So I thought it had to be because my testosterone level went up and it caused my Libdo to go crazy. So I started taking Spiro again on July 20th, but at a lower dose than I was currently taking. I had the vestibulectomy and the PGAD seemed to disappear. The vestibulectomy was a success I have zero Vulvodynia pain. PGAD symptoms suddenly started back up, but not as intense therefore I upped my Sprio dose and it seems like they are getting less and less everyday. However by down I would have assumed they'd be gone by now. Thinking that I started doing research on the Pundendal nerve and bang I had all the symptoms. I am scheduled to see a specialist next week. But I am curious if anyone else has tinging in clitoris? Let me mention that I am not experiencing spontaneous orgasms and I can control myself from playing down there. I feel like I am going crazy!


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Re: Anyone with Vulvodynia and tingling feeling in clitoris? Plus vestibulctomy success

Post  Katiej on Tue Nov 21, 2017 5:13 pm

I have the clitoris thing with vulvodynia. Sometimes it hurts sometimes its a tingling itch. U said u have vulvodynia for ten years but never had symptoms???. I get so upset reading ppl having it for so many years. Ive been told mine will go in a few months as it came after loads of antibiotics for a bad infection so the whole pelvic area is oversensetized. Id imagine I was clenching alot being sore with the infection for a while.


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Re: Anyone with Vulvodynia and tingling feeling in clitoris? Plus vestibulctomy success

Post  Hopeitworks on Wed Nov 22, 2017 6:11 pm

I had Vulvodynia pain for 10 years, but 8 days before my vestibuectomy I started getting arousal type feelings in my Clitoris. I have been diagnosed with PGAD. My MRI showed that my S2 nerve is trapped in my pirifomis muscle. I am getting a 2nd MRI on Friday. My new doctor says my nerve entrapment probably caused the vulvodynia also. Even though my vestiblectomy worked they go hand and hand. I use to have unprovoked vulvodynia and now it is provoked. And the PGAD symptoms come and go. But I found an amazing online forum and am headed in the right direction to cure my problem.


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Re: Anyone with Vulvodynia and tingling feeling in clitoris? Plus vestibulctomy success

Post  sarisbaris on Sun Nov 26, 2017 5:57 am

I had V for 15 years. I consider myself cured. I followed the recommendations by Anthony William. Before, I have seen 25+ docs (western/alternative/specialists). Only a few alternative docs helped manage the pain but it was never cured until Anthony William.

I'm really not sure what to recommend in your case. Read my blog. I'm not sure if it would help you.

He also did a show on the nervous system. And since his advice cured my V maybe his advice will help you.


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Re: Anyone with Vulvodynia and tingling feeling in clitoris? Plus vestibulctomy success

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