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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 …

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

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


Finally - the NHS have a page on vulvodynia!

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Finally - the NHS have a page on vulvodynia!

Post  ButterflyLiz on Mon Jun 04, 2012 10:07 am

Sooo, it came to my attention last year that the NHS' online medical condition website, NHS Choices (www.nhs.uk ), did NOT have a page on vulvodynia. How could this be possible - I asked myself - when they have been treating me for it for 10 years!! I have regularly visited NHS choices / sister site NHS direct over the years to check out symptoms of various illnesses I've had and they have just about every conceivable condition on there...but nothing on v.

So I emailed them and asked them to put something up last December. They said they would. Come April - still nothing. So I mentioned it on the secret facebook group & several lovely ladies also wrote to them. Then come May - success!!! There is finally a page for vulvodynia! It's actually pretty good, too.

http://www.nhs.uk/conditions/vulvodynia/Pages/Introduction.aspx

I think this is a big step forward for several reasons:

1) Women who have vulval pain who have not yet worked up to going to see their doctor can get info from a reliable site on what the problem might be - leading to less confusion & fear about symptoms & the condition in general.

2) It will be harder for anyone to tell women this condition doesn't exist / it's all in their heads. Especially NHS practitioners - this page can be printed out & taken to appointments with clueless doctors.

3) It should help to raise awareness of this condition generally - it would have been pretty hard to convince people this is a common, serious condition when our national health service didn't even have public info about it.
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Re: Finally - the NHS have a page on vulvodynia!

Post  londonlady on Mon Jun 11, 2012 9:01 pm

that is a great thing to do - well done!


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Re: Finally - the NHS have a page on vulvodynia!

Post  Sebby (Admin) on Sat Jul 07, 2012 10:31 pm


Thats Amazing well done! Smile
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Re: Finally - the NHS have a page on vulvodynia!

Post  tinkerbelle2 on Wed Dec 11, 2013 5:24 pm

Liz, that is amazing! It is that very page that actually made me feel I perhaps wasn't crazy! We've got to spread the word about this horrible condition
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Re: Finally - the NHS have a page on vulvodynia!

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