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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 …

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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 …

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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 …

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Shut up, Put up....

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Shut up, Put up....

Post  naomi on Fri Nov 19, 2010 8:44 pm

....I dont bloody think so mr!!!

cock.

SO the gynae consultant has once again joined the others and 'passed the buck'.

Told me that I shouldnt bother looking for a cure/treatment as there really isnt any point. I should just deal with it and have pain management. So I told him to FUCK RIGHT OFFFFFF! His reasons were that in England its all to do with money, the wont fund into the research of all our gynae conditions. I asked him to tell me something I dont know.

ok i didnt tell him to f off but I say "call me a stubborn bitch but I will not sit her and put up with it, risk my happiness, and make do...with no sex life, kids etc etc" If we all sat there and did fuck all where would we be now?!...living in caves still! I asked him if his nether regions were showing the same symptoms would he sit there and put up with it....he then change then subject mr!!

I asked him to refer me to someone else he can suggest.. and he couldnt even do that!

So onwards I battle on! So tired of it all i feel like i havent got any more fight left in me....for this week anyway Smile

I just realised I havent sworn enough in my post....ARSE FUCKIDY FUCKING TOSSPOT DICKHEAD GYNAE CONSULTANT THAT CANT THINK OUTSIDE THE FUCKING TWATING BOX!!!!!!!!

there...i think i have had my quota of venting words now Smile

tits

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Re: Shut up, Put up....

Post  Sarah001 on Sat Nov 20, 2010 9:11 pm

Have you been to a vulva clinic Naomi? I can't recall if you said you had or not but if not maybe one of these doctors could refer you to one? I find practically all doctors know next to nothing about this because they don't know why the problem is there to begin with so don't know which angle to approach it from. Or what about a pain clinic to try and find effective medication? I know you're like me and have the inflamed skin aspect too (lucky us) but the pain is still transmitted through nerves and nerves can cause inflammation so meds might help.

I totally understand how frustrated you feel though, perhaps it's time to start investigating more yourself and see if you can figure out why it's there Suspect and which direction to go in.

By the way your last little "tits" did make me laugh!! Laughing
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Re: Shut up, Put up....

Post  naomi on Sun Nov 21, 2010 5:35 pm

yeh im waiting on a referral still for pain clinic.

And now Ive gona down the nhs route and secured my benefits (for the time being anyway) I will continue with the Dr Crandall theory as that one still seems to be one explanation which is the closest to matching my symptoms. Its just a case of finding a doctor that will support me in the uk and dish out the meds. As its so far fetched in the uk and not the norm none of the consultants ive seen will support me.

The clinic Ive been going to was a vulval clinic and now between the pair of consultants i saw in this joint clinic noether of them could suggest where i go or who i see next...useless!! so it looks like its down to me again, no surprise there!!

Makes me want to punish a punish bag!!! failing that if u tell me where ur ex is sarah i could kill two birds so to speak!hehe! and cheryl cole is a nob. scuse my french.
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Re: Shut up, Put up....

Post  Sarah001 on Sun Nov 21, 2010 8:00 pm

Ha ha, best add punch bag to your santa list! Funnily enough I expected to have to sort this out myself, I've had years of doctors ignoring my joint problems and leaving me to spend thousands on private physio when it turned out to be a genetic condition they'd missed and can't be cured by physio so I'm pretty pissed off at the amount of time and money I've spent on that (about 15 grand over the years they ignored me) and the fact it's robbed me of most of my life. If they'd listened sooner it might not have got to the vulvodynia stage so I'm very annoyed at the medical profession in general too.

On a positive note though my hairdresser was telling me about her knee problems a while ago and after being given the run around she decided to see a pilates teacher who immediately spotted a problem around the hip and pelvic joint and helped her solve it. The one thing she didn't tell me at the time though was she had bright red skin in her vulva (like us) and felt like she had a constant really bad case of thrush that wouldn't go until she stabilised her hip and pelvis so it could well be a mechanical problem for you (I know it is for me!) and that can include the red inflamed skin. Maybe a referral to a general physio to have a look at your hips, pelvis and spine might be a good plan? Get what you can from the NHS before the Tories completely destroy it!

I suspect I'll end up at a pain clinic in the future too, I'm trying to sort that side of stuff out without having to wait for a referral and at least the vulvar dermatologist is good for prescribing me medication if she isn't good for anything else! It's crap that the people you've seen are at a vulvar clinic, I was keeping that option in reserve but it seems it's pointless!

I've got weird burning down the front of my thighs today too so I can't wait to see my physio again (about 2 weeks away) to see what she makes of that! I'm thinking something's probably irritating my ilioinguinal or genitofemoral nerves so I've spent most of the day googling to try and piece it all together Rolling Eyes I can't help it, I'm a geek! Laughing
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you tell him!!!

Post  sadone on Tue Dec 27, 2011 11:47 pm

I asked him if his nether regions were showing the same symptoms would he sit there and put up with it....he then change then subject mr!!"

love that you had the guts to tell the gyn this, naomi!

glad it made him so uncomfortable, that he had to change the subject. insensitive jerk!
he deserved that! some people need to be shocked in order to get them to think straight!
sheeeeeesh!!

you go girl!

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Re: Shut up, Put up....

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