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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


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


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


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

New and Feeling Down...

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New and Feeling Down...

Post  orchid27 on Wed Jan 01, 2014 12:20 am

I have suffered with pain for over 7 years. I married an amazing man 3 months ago who has been with me since before the pain started. I have provoked vestibulitis and underwent a vestibulectomy last week. The recovery is smoother than I expected, but what I didn't expect is the emotional toll. I am afraid my surgery will fail, I'm afraid I will will have to have another surgery if this one doesn't work. I am most affected by the ups and downs of the recovery; one day I feel great, the next day I feel like total crap. Lying in bed all day alone for a week is taking it's toll. I made a blog to try to help other women know what to expect who end up having the surgery, but sometimes I could really use some extra encouragement. My blog is at privatepainsupport. wordpress. com if you want to know about the surgery and recovery. Words of wisdom and encouragement would be such a help. I just want to smile again.


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Re: New and Feeling Down...

Post  Leslieg on Thu Jan 02, 2014 9:48 pm

Hi Orchid,
I hope you are feeling better today. I feel like the emotional toll of this might be worse than the physical pain for a lot of us. You are not alone in your emotional ups and downs. I struggle with this as well even after 5 years. My coping skills seem to be depleted. However, when my downs get severe I am forced to dig really deep within and somehow rally again. This is not easy, but we all have reserve somewhere. Allow yourself some time to feel bad about it.....you have every right. Then do something that you enjoy. I have different issues than you so I cannot offer specific advice. I just wanted to write and wish you well. I hope and pray for you that the surgery is the answer.

It's frustrating that so many of the websites re: V state that there is no cure. I would love to have the time, ambition and power to change that. Whenever I read that in a piece of literature I just want to flip off my computer :-0! It just isn't true and none of us should give up in finding our own cure. So many success stories I've read have happened 'by accident or by chance'. I hope/wish the medical field would pay attention to this.

You are an incredibly strong woman and will get through this. Try to stay positive and do whatever you need to feel happy and warm inside. You are healing. The smile is still there!


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Re: New and Feeling Down...

Post  Fingerscrossed on Fri Jan 10, 2014 10:14 pm

I had a vestibulectomy on Dec 17 for provoked vestibulitis, so I understand how you're feeling. You might even be feeling great now! I'm slightly past the three week mark and have been feeling wonderful. I was very tired of lying down all the time too because I wanted to move around and leave home. Unfortunately, I live right on a hill, so I can't really walk anywhere. If I go up the hill, I have to walk down and visa versa. I would also not recommend taking stairs for a while, even at the three week mark. I did my second checkup yesterday with my doctor and he said I shouldn't be doing that yet, after I told him I walked up three flights to get to the office because I wanted to get some exercise. He said that everything looked good and that I need to keep taking sitz baths, which I hate doing because it feels weird.

I have also been feeling those same concerns about the surgery not working. I've been told there is a 20% chance that the surgery won't work. When I was lying in the hospital bed by myself before the surgery, I started crying because I was afraid it was all going to be for naught and I felt so lonely. I know that if it doesn't work, I'm going to cry a lot and my husband probably will too because we want to be a normal sex crazed couple. Botox is super expensive and typically isn't covered by insurance. Even if it doesn't work, there are other options. I've thought about doing chiropractics because I've had back surgery and thought that perhaps I had a pinched nerve.

I hope you're feeling better!


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Re: New and Feeling Down...

Post  orchid27 on Tue Feb 04, 2014 8:59 pm

Thank you ladies! I just wanted to update and say I am doing better. I had a q tip test at my 4 week appointment with no pain! I am working with the dilators now with poor success and am having some struggle with physical therapy. Just trying to remind myself that it is a journey. I get so lonely being home all day by myself. I wish there was a face to face support group! Emailing back and forth with others has been extremely helpful though mentally. All your stories are so similar to mine, it is comforting knowing I am not the only one dealing with this.


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Re: New and Feeling Down...

Post  Alana3 on Tue Feb 04, 2014 9:06 pm

Yeah I had a vestibulectomy last year trust me what youre feeling is all normal!!!!


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Re: New and Feeling Down...

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