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» What's next?
Fri Apr 20, 2018 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


Is this even vulvodynia !!!!

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Is this even vulvodynia !!!!

Post  Ouch123 on Wed Dec 09, 2015 11:57 pm

Hi all,
I would like to explain my symptoms and see if it fits.

I am burning from the top of my labia all the way past my anus, to my sacral region. The pain is sometimes a pinch in a specific labial area, but mostly its just all over. There is sharp pain in my "crack" between my anus and sacrael area, as well as labia and vaginal opening. I was diagnosed with herpes last month. I have never had an outbreak, they just found it on a blood test. I was told that although my herpes wasn't active, I had been exposed at some point. I suspect that maybe this is a herpes thing instead of a true vulvodynia thing. I don't know how long I had the hsv2 virus, maybe a long time. I don't know, my doc just sort of shrugged and said "they are both nerve problems".
Text book vulvodyna seems to be a little more localized than I am describing. I'm particularly interest to know if those of you with vulvodynia suffer sacral pain. Any insight.

Unfortunately, I cant take antivirals like Valtrex. I am in an unbelievable amount of pain. I don't really know what to do and I am extremely frustrated by the lack of urgency on the part of my doctors. I'm taking gabapentin, but I cant take it during the day. It helps me to get a little relief at night so I can sleep.
this seems like a weird place to say this, but, I really don't see a way to keep living. I see that people suffer with this condition for years. I am 50, no kids, no husband. I really just don't see the point. I am not depressed or impulsive. I actually work in the mental health field and feel like I have a pretty good handle on my own neurosis and mental health issues. I feel pretty sad about it really, I don't really want to die, but I don't see any way to stay living. I'm between an 8-10 on the pain scale all day every day (in tears from pain at times), and I have absolutely no chance of ever developing a meaningful intimate relationship.
Don't worry, I'm not on the ledge, its a decision I will make after I have exhausted treatment options, but at this point, I haven't been presented with any treatment options other than gabapentin. Sorry for the morbid disclosure....

Ouch123

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Re: Is this even vulvodynia !!!!

Post  PainBlogger on Thu Dec 10, 2015 9:07 am

It may be worth you getting a physio/PT who specialises in pelvic pain to assess you. I don't know where you are in the world so whether you'd need a doctor's referral. But various nerve issues or lower spinal issues could cause pain in the sacral region and around the coccyx. Pudendal neuralgia can cause vulval pain. There are other treatments other than drugs, especially if the herpes virus is not the actual cause of your symptoms.

I do get some sacral pain, but I have fibromyalgia so I get pain pretty much everywhere. There are a couple of books you may find useful reading: Amy Stein's 'Heal Pelvic Pain' and Isa Herrera's 'Ending Female Pain'.

I know at the moment you feel you've no chance of ever developing a meaningful intimate relationship, but, with all due respect, that's not an outcome that is set in stone. Try to take one day at a time. I hope your symptoms improve soon.

PainBlogger

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Re: Is this even vulvodynia !!!!

Post  Ouch123 on Thu Dec 10, 2015 4:24 pm

I just came from my new doc. She said my v was indeed atypical as i am not sensitive to touch. Its more a nreve thing. I dont really know if thats good or bad, but thats what it is. My guess is that its post herpetic neuralgia, which tends to resolve after a few months. I feel like i can cope a bit better if i know there is a possibility of relief eventually.
Thanks for your response

Ouch123

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Re: Is this even vulvodynia !!!!

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