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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


New here, my story and looking for advice

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New here, my story and looking for advice

Post  rachiecakes on Wed Apr 26, 2017 9:02 am

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching and burning never subsided and since then I've had almost...a dozen negative swabs that show no sign of infection. I don't have redness, swelling or abnormal discharge...my vagina looks...completely totally normal. Unfortunately as you can imagine - the pain, burning and sometimes itch has never subsided. I have periods of relief, periods of mild irritation and sometimes times of terrible pain that makes it hard to walk. The pain is all over - not just my vestibule. Some days my anal area is so sore, around my clitoris and labia.. even my pubic hair hurts. Other times I feel almost normal and sex is normal etc. Sometimes it feels like I have a sunburn - it feels like the skin is so dry (even though it's NOT and theres no visible issues and I'm covered in coconut oil)

Again I get swabbed when I'm feeling good - all clear. I get swabbed when I'm in terrible pain - all clear.

The gynecologist I saw said "this will go away on it's own" but sometimes the pain is terrible!

I've done tons and tons of vulvodynia research and it does seem like all signs point to vulvodynia...but a lot of research says generalized vulvodynia happens more with older women. I already have IC so is my pain less likely to go away on its own? Has anyone had a similar story - or any helpful tips? I've changed all soaps, use coconut oil, wash with emollient etc. all those first line options. I've been researching meds but sometimes it all feels very hopeless. If I go on meds do I have to stay on them forever?

Thanks Smile

rachiecakes

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Re: New here, my story and looking for advice

Post  fairlight10 on Wed Apr 26, 2017 4:19 pm

I would stop all lotions and potions in that area firstly. I have been on nortriptyline 20mgs for 5 years.I have tried to drop to 10mgs but I get irritation start up again. 20mgs keeps me comfortable and sane. If I have to take it for the rest of my life then, I will. I could not go back to that pain again. Vulvodynia can affect the urethra as well as the other areas you have experienced this condition. It can affect females of all ages. Women who suffer fibromyalgia, migraine, chronic fatigue syndrome, irritable bowel, intersistial cystitis are likely to suffer with vulvodynia. All these conditions can be helped with low dose antidepressants. I hope this has been a help.

fairlight10

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Re: New here, my story and looking for advice

Post  PainBlogger on Wed Apr 26, 2017 8:33 pm

If you go on meds and find they work, you can always try coming off them after a period of time. The meds may break the pain cycle so not be needed forever. I've had good results with duloxetine. You can read my pain background here http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement to save me retyping. Smile

I really understand your frustration. It really is a horrible problem to deal with. But people do get better.

PainBlogger

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Re: New here, my story and looking for advice

Post  Hatty on Fri Apr 28, 2017 2:43 pm

Has anyone tried Gabapetin for pain?

Hatty

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Re: New here, my story and looking for advice

Post  mary jane on Thu May 11, 2017 4:40 pm

sounds like the nerves are irritated. You could go on a low dose of ami or nortriptyline for a period of time and it should subside. It takes at least 4 weeks for it to work..for me it took 3 months almost but the symptoms dissapeared
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Re: New here, my story and looking for advice

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