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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


Any success with this?

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Re: Any success with this?

Post  Sarah001 on Sun Feb 19, 2012 11:45 am

I can just imagine that conversation with my already baffled doctor! Rolling Eyes Seriously though I would only consider it if learning to relax the PF and having trigger points removed didn't do the job because botox doesn't deactivate trigger points so it's another band aid kind of solution with a short life span plus it doesn't retrain the brain to stop clenching so the second the botox started to wear off I'd be clenching again and back to square one. I've read posts all over online from women who've tried botox and never seen anything positive, I think a lady on here tried them and it didn't work because it's more for localised provoked pain as opposed to generalised unprovoked so probably not a great option for me anyway. Another things that would worry me is injection sites can easily turn into yet more trigger points and I really don't need any help in producing trigger points! Are you thinking about having some done?
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Re: Any success with this?

Post  Rose86 on Sun Feb 19, 2012 6:07 pm

Hi Sarah,

Yeah I am considering it. Just need to find a doctor in London who does it. The research in the area is pretty good for localised provoked V, which is what I have. I know it's short term, but that's probably a positive. I think it might help me find out if the muscles are really causing the VV. If I have it done and things even slightly improve, even in the short term, then i'll know the muscles are part or all of the problem. I'm just not able to stop clenching them. I just cannot seem to remember to relax them often enough for it to make a difference at the moment. Botox has such a high success rate for vagismus too. I know it's a new treatment in the UK, so i'm not sure how easy it is going to be to find someone to do it. I don't even know where to start! I don't want to ask my GP. I'd rather find a doctor and make contact with them, then once I have a name approach my GP. I might not even tell her it's botox, just that this Dr is a a specialist in V. I'm fed up with my GP at the moment to be honest! She doesn't have a bloody clue!

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Re: Any success with this?

Post  Sarah001 on Tue Feb 21, 2012 7:13 pm

My doctor is the same, referring me for stress incontinence when I have the opposite problem just says it all really. I don't really know what to suggest, I'm not sure what kind of doctor it would have to be either. Anyway keep us posted and remember if you check in every minute or so what you're doing with the pelvic floor and then relax it every time eventually it will stay relaxed for longer and longer. It's not easy, I've got probably a year or more of retraining everything to work correctly because I'm such a mess so I know how daunting it seems. Good luck with your botox search.
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Re: Any success with this?

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