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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: 3

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 …

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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

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: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


Who is from London?

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Who is from London?

Post  mary jane on Thu Oct 10, 2013 10:28 pm

Hello,

I will be going to a The London Vulval Pain Support Group meeting this Saturday, 12 October, at St Cyprian's Church .
If anyone is coming then, OR if anyone ever has the time to meet up, I am a friendly 26 yo student here and would much love to provide and receive some support !
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Re: Who is from London?

Post  Mariahopes on Mon Jan 27, 2014 12:30 pm

Hi Mary Jane,

I am not from London but am in London on Wednesdays and Fridays having physio if you would like to meet to off-load!

x

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Re: Who is from London?

Post  mary jane on Mon Jan 27, 2014 5:27 pm

I'm free next Wednesday and Friday, love!
PM me with the time you're available, I live in central Smile

xxx
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Re: Who is from London?

Post  Mariahopes on Mon Jan 27, 2014 5:31 pm

Well I'm in London this coming Wednesday for physio at 11 at Harley street! Are u able to meet then? I could meet u at say 12:15? Do u know marylebone high street?! Afraid I'm not familiar with London really! Xx

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Re: Who is from London?

Post  Alana3 on Mon Jan 27, 2014 5:45 pm

You guys suck I love london and its been a while! Hope you have a great meeting Smile say hi to Harrods for me Wink

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Re: Who is from London?

Post  Mariahopes on Mon Jan 27, 2014 6:01 pm

We will do Alana! Ur more than welcome to join us if u are free? Xx

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Re: Who is from London?

Post  Alana3 on Mon Jan 27, 2014 6:20 pm

Haha I live in florida otherwise I would!

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Re: Who is from London?

Post  Mariahopes on Mon Jan 27, 2014 6:22 pm

Oh sorry didn't realise- hope ur well at the moment xx

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Re: Who is from London?

Post  Alana3 on Mon Jan 27, 2014 6:47 pm

Nope you're all good. My vulvodynia is.cured but suffering from 3other problems which.arent so good. Have a great meeting tho at least that's one good thing this all brings us. Some friends Smile

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Re: Who is from London?

Post  Mariahopes on Mon Jan 27, 2014 6:57 pm

Really wow! How did u cure it? Sorry to her of your other problems. Yes I agree- thank god for meetings, forums, friends and family! Xxx

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Re: Who is from London?

Post  Alana3 on Mon Jan 27, 2014 7:18 pm

I had the surgery it's all gone Smile

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Re: Who is from London?

Post  Mariahopes on Mon Jan 27, 2014 7:47 pm

Brilliant hun! Fab news! Pretty sure mine is muscular... Having PT for 3 weeks and starting to notice improvements! Fingers crossed! Xx

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Re: Who is from London?

Post  Alana3 on Mon Jan 27, 2014 8:11 pm

Good! I did PT too after my surgery and it helped too

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Re: Who is from London?

Post  mary jane on Mon Jan 27, 2014 9:48 pm

I can't seem to be able to PM you, maria....
yes, this wednesday I can make it because that is EXACTLY where I live Smile harley st is a stone's throw away from me.

can you try and pm me your phone number? 12-ish is good for me !
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Re: Who is from London?

Post  zarli on Mon Jan 27, 2014 10:54 pm

Oh I am sooooooooooo jealous you are meeting up !!!
Any one want to fly to Melbourne ??? haha
I would love to meet another woman with Vulvodynia or nerve pain. To think it takes 4 months to get into a vulva pain clinic in Melbourne must mean there is lots of other women in Melbourne that have V. May be I should walk around Melbourne with a sign around my neck !!! haha
Enjoy your catch up girls xx

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Re: Who is from London?

Post  mary jane on Tue Jan 28, 2014 10:31 am

@ zarli it takes just as long here...2 to 3 months or even 6 months for the best urogyn specialist in the city!
I'm sure there are a lot of women in australia with this issue, it's just hard to organise meetings...the one I go to is like an AA type meeting, we meet in a church (in their basement)...it costs a bit of money...
the only place where I can think of which has australia ladies is here :
http://www.pudendalhope.info/forum/viewforum.php?f=30

perhaps you could try signing up ...


anyway, hope you have a nice week Smile
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Re: Who is from London?

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