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Fri Apr 20, 2018 10:07 am by amyhp

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Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Hello, my name is medical mystery

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Hello, my name is medical mystery

Post  coline83 on Sun Sep 19, 2010 1:08 pm

Hello everyone,

my name is Coline and I've been suffering from vulvar pain for 7 years, on and off. I had many diagnosis but for the past 3 years, it seems that doctors ran out of ideas. My current gynecologist made me do blood tests, I had a PAP test and everything looks perfect! There seems to be absolutely no reason that could explain my constant burning and stinging/itching on different areas of my vulva. So my doctor said, and I quote: "I don't know what to do with you". I was treated for yeast at least a hundred times, I was told I had genital warts, which was probably true but couldn't explain the intensity of the symptoms. And now, the warts are gone and the symptoms are still here. Funny enough, they can disappear for a moment when I'm sexually aroused but they come back soon after. If I'm lucky. If I'm not, I just won't be able to have sex. The pain has been present for a year now but before that I had a one-year break. Before the one-year break, it was slightly annoying but ok. Before that, it was one or two weeks per month. And now we're back to that and I can't think of anything (psychological or situational) that could have triggered this. I tried to stop going to the pool once a week, I tried to change my diet, I tried to stop biking, nothing changes.

Several doctors heard my story and admitted they didn't know what I had but refused to look further and just sent me back home. I have an appointment coming at a specialized clinic (VUVO for vulvo-vaginal disease) in Montreal, where I live, in december. In the meantime, I tried acupuncture to release the pain but the treatment actually suppressed all sensation in my vulva, which is even more disturbing than the pain cause now I feel numb and unable to be aroused. I stopped the treatment and just hope it will come back soon.

I read the V book and I found my symptoms to be very similar to what she described as vulvodynia ( gynecological exams really hurt, I can't use tampons, etc...) but as long as I'm not diagnosed, I'll get no treatment.
Does my story sound familiar to anyone? Am i crazy to think it could be vulvodynia? Does anyone know a specialist in or around Montreal?
My apology for this way-too-long post...

To end on a positive note, my fiance is very understanding and involved in my quest for an answer so I have plenty of support from him. Looking at the bright side....

Thanks to you all

Coline I love you

coline83

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Re: Hello, my name is medical mystery

Post  Husband on Sun Sep 19, 2010 3:58 pm

Hi Coline,
Sounds like vulvodynia. Can you provoke pain by a slight touch with a cotton swab? If this caused pain and if the doctors have no ideas any more than you have the diseases name.

Husband

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Re: Hello, my name is medical mystery

Post  Sarah001 on Sun Sep 19, 2010 5:26 pm

Hi Coline, it certainly sounds like vulvodynia but it would do because that just means "pain in the vulva"! It's quite interesting acupuncture made the area numb, I'd say that points to at least partly a musculoskeletal problem and perhaps over time more acupuncture might help restore normal sensation? I haven't tried it myself but it seems pretty hopeful that it changed the sensation. The other thing that springs to mind is an overabundance of lactobacilli, it's not common but tends to present in a pattern of a couple of weeks a month where there's pain. Not many doctors think to look for too much good bacteria but it can upset the balance just as easily as not enough good bacteria. Have you ever had antibiotics and found the problem improves while you're on them?

Anyway, welcome to the forum.
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Re: Hello, my name is medical mystery

Post  Sebby (Admin) on Mon Sep 20, 2010 7:13 pm


Hi and welcome coline

It does sound like Vulvodynia which as previously said does just mean pain in the vulva!

How did they treat your warts? I have read in the vulvodynia survival guide by Dr Glazer that the treatment for warts have been shown to "irritate the vestibular are futher" ...Trichloroacetic acid (TCA) and lazer surgery. but it is not thought that the HPV virus itself is linked to developing Vulvodynia.

Sebby
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Re: Hello, my name is medical mystery

Post  jules on Tue Sep 21, 2010 2:49 am

Hi Coline,

Read our stories....you have very similar symptoms. Also, I suggest you read the support and advice section. We all share different treatment techniques we have used. Many of us are on medication, ie: Amitrip., Lyrica, neurontin, vicodin (for pain) etc. some have tried physical therapy, spinal blocks, acupuncture (like yourself), botox, etc. There are a number of treatments for this nerve pain. you will also want to rule out a skin disorder w/ a biopsy. It sure does sounds like Vulvodynia. I live in Minnesota. So, I don't know of a doctor in Montreal. But, it sounds like you are heading in the right direction. In my opinion, you may benefit by going on meds for the nerve pain and then physical therapy for the pelvic wall muscles. Good luck. We are here for you.

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Re: Hello, my name is medical mystery

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