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» What's next?
Today at 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
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


Any chance this could be something other than vulvodynia?

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Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 5:45 am

I'm 45 and was diagnosed with vulvodynia 2 years ago. I was put on amitriptyline and vagifem and got the symptoms pretty much under control for almost 2 years, with just minor flare-ups whenever I'd have to wear a pad during my period. I weaned myself off the vagifem after the first 6 months and still didn't have a flare-up. Then in mid-June of this year, I started getting vulvar inflammation and burning again. I went back to my doctor (who is clueless when it comes to this condition) and renewed my prescription for vagifem and increased the dosage of the amitriptyline to 50 mg per day.

I have yet to get symptoms back under control and it's been 2 months now. I've been taking calcium citrate and magnesium and somewhat following the low oxalate diet, in addition to continuing to take the ami and vagifem.

I can have some days where I feel quite good and I feel hopeful. The last 4 days were good, but then today has been horrible again. I have had hemorrhoids since my first pregnancy 15 years ago and they seem to flare up too when the vulvodynia flares up. I also feel like I'm swollen inside. When this flare-up first started, I was definitely swollen outside, but now I feel like the swelling is all internal. Some days I can barely sit. I've also noticed the last few nights that the vagifem is difficult to insert, as though there is something at the top of the vagina preventing it from being fully inserted. Yet when I check myself with a finger, I don't feel anything abnormal, other than feeling swollen. So maybe it's just the swelling preventing the vagifem stick from going all the way in, I don't know.

I saw my doctor yesterday and I'm waiting for a referral to a gynecologist, which can take some time. This is probably wishful thinking, but I keep hoping this gynecologist will tell me the first one 2 years ago was wrong and I really don't have vulvodynia and that what I do have is very simple to fix. The thought of continuing to suffer with something for which there is no known cure just makes me so depressed.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 7:59 am

Are you in the uk? If so you can make an appointment at your GUM or sexual health clinic. They were so much more helpful than my doctor who told me to out up with the pain. Mine too felt swollen to me but my doctor told me it was normal. Sexual health doctor found my problem straight away. Amitryptilin was the first treatment but he said if itddidn't work there were other options. I cried in his office. It was a relief to have someone who wanted to help. Luckily amitryptilin worked but its only been about two weeks since I stopped taking it and I have a very understanding partner. Hope you get the help you need and deserve. X

bearferret

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Re: Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 2:46 pm

I'm actually in Canada. I'm waiting to see the same OBGYN who delivered my kids and hoping he will be knowledgeable about this condition and be willing to keep at it until we find something that works. My current GP seems to have no clue how unbearable these symptoms are.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 3:00 pm

Hope they sort you. My GP was worse than useless as well. Hugs and support. X

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Re: Any chance this could be something other than vulvodynia?

Post  sailor_moon on Thu Aug 21, 2014 11:31 am

There are many different health issues that give the same/similar symptoms as Vulvodynia. Vulvodynia can be caused as a symptom of a bigger problem going on.

Anything and everything from skin conditions to allergies (both contact irritants and food allergy), hormones, endometriosis, PCOS, low iron...so so many different things!

Have you got any other symptoms apart from vulvodynia? Does it get worse or better at different times of the month?
Have you had blood tests and ultrasounds ect?

Finding a decent doctor is the hardest thing. I'm up to doctor number 12! I am hoping he can fix me. I am undergoing a month long blood test to see what my hormones are doing. He is thinking my problem is hormonal as I have many other symptoms.

Do your research and see if there is a vulva specialist.
you can get a referral to. Find someone who specialises in vulva disorders.
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Re: Any chance this could be something other than vulvodynia?

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