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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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


PLEASE READ

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PLEASE READ

Post  katie220 on Wed Mar 20, 2013 5:51 pm

Hey everyone, I just wanted to ask you all a few questions about whats going on with me. My pain has been the same around three years. The pain gets better around the first day of my cycle and then progressively gets worse towards the luteal phase. Sometimes I can have sex and sometimes I can't. The strange thing is that the pain is mainly on the right side of my vagina. Docotors always told me I had a bacteria problem but no anti biotic ever helped. It doesn't make sense because if I had a nerve problem then why would the pain get better at times? I am really frustrated. Another odd thing is that if I take xanax the pain level goes down. Also, if I drink baking soda and water the burn on urination will go away. I am just really worried that this will turn into full blown constant pain and it will be all my fault. Can someone who has had this for awhile give me some advice?

katie220

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 6:11 pm

Mine always got worse before my period, and mine is worse on the right too. You could possibly have a muscle spasm on the right side which makes it uncomfortable. I had surgery in December and my probelm disappeared except for the muscles, which is a work in progress. If you take a xanax its for anxiety, so I would imagine that the pain would diminish because it makes you relax and if its at all muscular, well there you go! Perhaps you have IC? I think burning with urination is a symptom of IC. Also, people with IC have trouble having sex as well. Do you pee a lot? And nerves are stupid, my pain was only there if provoked not all the time. So even with a nerve problem, it doesn't mean that your nerves aren't firing off different signals at different times. Pay attention to what you're doing when it starts hurting really bad. Sex? Sitting too long? But my vulvodynia def got way worse (as did everything) when my period came and better after it ended. Stop taking the antibiotics unless you really need them, they aren't going to help you for what you have. I had a doctor who did that to me too, and it never worked, finally, I got so frustrated I went to look for a specialist (after I was told I had herpes which I DIDNT!) and he diagnosed me with vulovdynia and treated me with a topical compound for a while and finally I couldn't take it anymore I opted for surgery.

Alana3

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Re: PLEASE READ

Post  katie220 on Wed Mar 20, 2013 6:38 pm

Thanks for the reply! I don't think I have IC. I mean I pee a lot but I've been that way since I was a little kid. What kind of surgery did you have? Surgery would be the last resort for me but if it works I would definitely do it. The only problem is that I can have sex at times and I wouldn't want surgery to numb me to the point where I can't have an orgasm anymore. Did it do that to you? I was also wondering if you felt a sort of "zapping" feeling or a feeling of electricity on your right side at times. It happened to me when I stopped drinking caffeine. Yes, it does get worse when I sit too long. When I get up and walk around it gets a lot better.

katie220

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 6:50 pm

They basically removed the affected skin, it was a last resort for me too, and my doctor tried everything before he did the surgery. I mean I'm not having sex right now, but I still have every sensation (besides the pain) that I had before surgery, now. You'll def be able to have an orgasm lol, no worries. I sometimes do get an electrical feeling, but its every now and then, but I think mine is from where my body is recovering from my surgery lol Yours sounds like mine where your skin is affected and possibly some muscular. But I mean I don't know for sure. Where are you located? If you're anywhere near me, my doctor is awesome and has made me feel so much better Smile

Alana3

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Re: PLEASE READ

Post  katie220 on Wed Mar 20, 2013 7:04 pm

That's awesome! I always thought surgery made you permanently numb lol. I live in a suburb around Kansas City Missouri. What was your condition called? If you can't give me the name of it could you describe it to me more? I want to tell my doctor about it because he is confused about what my problem might be too.

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 7:31 pm

If your doctor doesn't know what your problem is, I'd get a new one or someone who can help point you in a direction appropriate for you. Mine was provoked vestibulodynia, basically meaning that my pain was only there on contact (with a penis, qtip, pelvic exam, tampons, etc.). So sex was impossible, and where it sometimes flared it was nothing like I've heard other people describe. I guess it could make you numb, but that was a question I asked my doc when he first told me about it, and said that would defeat the entire point of the surgery and most people have like 98% success rates. I'd say mine was that close. The surgery itself was called a vestibulectomy. However, only a few people are referred that route because it's not for everyone. People with unprovoked vestibulodynia are not often reccomended to go down that road, for whatever reason, it wouldn't work in their case. But I had no burning with peeing, I would look into that too, that sounds awful. I live in Florida, I don't know if that's an option for you, but my doctor honestly was a life saver for me, he specailizes in vulovdynia, and chronic vag pain. Another thing I did was physical therapy, but before my surgery it was so painful I couldn't take it anymore and had to stop, now I go with no problems, except for muscle spasms. Grrr.

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Post  katie220 on Wed Mar 20, 2013 9:16 pm

Thanks for all the advice! You definitely helped. I will keep you updated on how my progress goes and I'm going to look up some vulvar pain specialists in Kansas City. I may just have generalized vulvodynia because it's not provoked. I'm only 24 though so I'm not really sure if I'm too young for that.

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Re: PLEASE READ

Post  Alana3 on Wed Mar 20, 2013 10:16 pm

It doesn't matter how old you are there are little kids with it unfortunately. Good luck lmk if u need anything

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