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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

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: 3

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

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


My Pain in the .........

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My Pain in the .........

Post  Thinolgal on Tue Jun 26, 2018 11:05 am

OK, so I'm old(ish)....64. Unfortunately, pain isn't one of those faculties that you lose as you age.

So.....vulval varices on right during my second pregnancy nearly 30 years ago. They went away (pretty much) after delivery....didn't completely disappear, but they weren't painful.

Fast forward to 3 years ago and I developed pain and a little swelling in those veins....the overlying skin became extremely tender even making wearing underwear a real trial.So....vulvodynia....right side only, and only skin overlying the horrid varicose veins Gynae. referral....by the time I was seen, the pain had settled and the advice was USELESS...."If it happens again, get your feet up and rest"! bounce bounce The letter to my GP just told him I was very thin and maybe something else was wrong with me......Well, for starters, I ain't THAT thin, and all my family are, you guessed it, THIN.

So, no problems until autumn last year....the pain came back.....much worse and persistent this time. Offered all manner of really nasty pain killers from the family doctor and referred to (different) Gynae again. Give Lidocaine, too, which just burnt like fire. Amitryptyline......didn't help as far as I can see and may lead to dementia in oldies like me, so discontinued..Gynaecologist much more helpful this time......skin washes, topical estrogen, referral to vascular surgeon to get rid of veins. Vascular surgeon doesn't seem keen to do anything.....but awaiting 'imaging' Question Meanwhile the pain stops me doing many things. I've always been very active, but many activities are prevented by the searing pain where the sun don't shine.

This post is largely a typed moan.....but, as you ladies are all too painfully aware, this pain isn't one we want to discuss over the dinner table.

So, anybody had anything similar, and if so what did you do?

Thinolgal

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Re: My Pain in the .........

Post  emalita on Tue Jun 26, 2018 2:05 pm

Hi,

Have you tried seeing a pelvic floor physical therapist? They can work with nerve issues and hopefully prevent surgery.

emalita

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Join date : 2016-03-29
Location : USA

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Re: My Pain in the .........

Post  Thinolgal on Wed Jun 27, 2018 4:58 am

Thanks for the suggestion. Unfortunately I don't think that the service exists anywhere near to where I am (remote rural location). I'll do my best to find out if there's anyone remotely local.



Thinolgal

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Re: My Pain in the .........

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