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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


There is hope after all!!

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There is hope after all!!

Post  Cbrimer28 on Sat Apr 28, 2018 2:55 am

Hey guys, I’ve been a part of this group a while, the silent one in the back. I have maybe posted two or 3 times. This journey has really put me through hell, with the pain of course, but also the emotion of it. I was broken. Tired. Defeated. I went so long without even getting on these sites because I felt I had no good news to give. These young girls with their new diagnoses begging with someone to say it gets easier. And I didn’t want to be the one to say, it likely won’t, because there is no help in that. I was scorned. I’ve seen so many doctors I lost count. And only ONE has ever looked me in the face and said I think I can cure you. Excuse me, you said cure, not just offer relief? He said yes, it will be a long road, but together we can get there. I believe him. I’m going on 12 years of this terrible condition that has closed doors on a healthy sex life. And babies. Don’t even get me started. Anyway, I don’t want to run around saying this guy is a miracle worker, because we are in the first stages. But he had a plan. A diagnosis(multiple) and treatment for it. He told me I had conditions I’d never heard of. I got more in one visit from him than all my other doctors combined. He is different. I drove from SC to Washington DC because I truly felt he could help me. I had already done my research. For the first time in a long time, I don’t feel like I’m destined to ride this out in misery the rest of my life. It’s not just “something you’re born with” like that’s an excuse to deal with this. I was tired of being the guinea pig and getting looked at like I was crazy. I made the big step, slightly stalked the dr, and ended up being his patient. I do not regret any of it. His Name is Andrew Goldstein and this is what he does. All the conditions that no one else knows how to manage, he does. So if someone out there wants to no more about him I’d be happy to talk about him. He is by far the best chance I’ve ever had to rid myself of this disease permanently.

Maybe this will be a beacon of hope to someone else, like it was for me.

Casha Brimer (now Whitaker)

*vestibulodynia, severe pelvic floor dysfunction, low levels of estrogen and testosterone, cervical ectropion. Those are some of the crosses that I bear, that will hopefully be long gone. Trust me, no one is too complicated.

Cbrimer28

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Re: There is hope after all!!

Post  fairlight10 on Sat Apr 28, 2018 9:33 am

Hi Cbrimber. I have read many posts saying what a help Andrew Goldstein has been. Just finding this forum was a relief for me. Knowing I wasn't the only one suffering was a help.Thank you for posting and keep us informed of your journey to eradicate this spiteful condition.

fairlight10

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Re: There is hope after all!!

Post  bambi82 on Tue May 15, 2018 4:25 pm

Hi Cbrimber,
What are the treatments Dr Goldstein is advising for your conditions? I also have a cervical ectropion. Estrogen/testosterone creams, gels? Pelvic floor rehab/physio? I would be interested in the treatments he offers for you.

Glad you got some light at the end of the tunnel, wish there were doctors in the UK offering such hope or anything above a steroid cream or antidepressant which is so poor but are the only offerings here.

bambi82

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Re: There is hope after all!!

Post  Cbrimer28 on Wed May 16, 2018 2:50 am

Hi bambi82,


A ton of things came out of my visit with dr Goldstein. He took me off birth control completely and said under no circumstances do I go back on it. He gave me an estrogen/testosterone cream, Valium suppositories, pelvic floor rehab. I go back in July and he said if the muscles werent loosened he would make them loosen with Botox. So we will see. I started the suppositories and I go for my second PT appointment Thursday.

Cbrimer28

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Re: There is hope after all!!

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