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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 …

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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

Has anyone seen Helen Forth - physio at royal free?

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Has anyone seen Helen Forth - physio at royal free?

Post  bluekangeroo on Fri May 18, 2012 9:07 am

I have heard good things about her on the vulva pain soc website. she has done talks and things about vulva pain.

I wondered if anyone has seen her or has heard anything good about her?


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Re: Has anyone seen Helen Forth - physio at royal free?

Post  riv on Sat Jun 09, 2012 9:43 pm

Hello there

I didn't get to see Helen Forth but I did get a referral to her physio dept and just had my first appointment with another physio Amanda who was lovely. The waiting list is long....they have just introduced harsher penalties for people not turning up to appointments so hopefully this will change....but I waited around 5 months to get my initial appointment. Glad I pushed for it though as I do have pelvic floor issues and hoping that treatment for this will help. Also my therapist told me they have a specialist vulva gynae department there so you could ask to be referred to both departments if its local for you. I don't know what the vulva department is like there though. The physio seemed really knowledgeable though. I discussed my IBS being something that kicks off at the same time as my vestibulodynia and she said that its a common thing that she hears so it was worth going just to find that out

I am seeing them again in two weeks so hopefully I can post and let people know how its going!

Riv x


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Re: Has anyone seen Helen Forth - physio at royal free?

Post  londonlady on Thu Jun 21, 2012 10:17 pm

Hi Riv,

How did you get a referral there? Is the royal free your local hospital?

I get affected by IBS too, which is triggered and then compounds my pelvic pain, so any tips you pick up about manging them together would be much appreciated!




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Re: Has anyone seen Helen Forth - physio at royal free?

Post  riv on Fri Jun 22, 2012 9:28 pm

Hello London Lady!

You can ask for a referral anywhere you like with the NHS now - just ask your GP - you get much better results with the GP if you go armed with print outs! So contacts for the department, who you want to me referred to etc- if you can hand something to your GP they are happier to refer you where you want. I am with Guys for dermatology (although Royal Free have a Vulva clinic too) but heard good things about the royal free and didn't know where else I could go for the vulvodynia physio

In terms of managing the IBS with physio its not such good news - apparently fixing pelvic floor probs doesn't help with the IBS but my phsio said they do tend to flare at the same time so Im hoping if I can reduce my flare ups in my fanny then my IBS will be less likely to flare - here's hoping anyway - I also think Im going to try the oxalate diet for IBS and V but it doesn't great reviews - Im going to try it anyway. It cant make it any worse!

Riv x


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Re: Has anyone seen Helen Forth - physio at royal free?

Post  Melian on Wed Aug 26, 2015 11:00 pm

I am with Amanda as well! How did you found her!?


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Re: Has anyone seen Helen Forth - physio at royal free?

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