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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


Vulvodynia my whole life & Vestibulectomy results

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Vulvodynia my whole life & Vestibulectomy results

Post  nola218 on Sun Apr 05, 2015 4:42 am

Greetings from upstate NY...

I feel like an expert on the subject of Vulvodynia. So much so, that I have had doctors admit to me that I know more about it than them. I'm sure a lot of you have seen this. So little is know about this in the medical world that it can become very frustrating to find answers.

I'm 30 years old. Ever since I lost my virginity at the age of 17, I have had vaginal pain. I thought maybe the first time was supposed to hurt, but when it continued hurting, I knew something was wrong. I saw endless amounts of doctors. I had endless amounts of failed relationships, heartbreak, men leaving me, ridiculing me, and feelings of no self worth. I tried every solution in the book...physical therapy, antidepressants, estrogen, lidocaine, amitryptiline, home remedies, biofeedback, pelvic floor exercises, dilators, botox, gabapentin...I could go on and on. No one could figure out what caused this, as everything physically looked fine. I developed severe depression and anxiety and was eventually diagnosed with Bipolar II disorder. I would be in a state of depression but would then lash out at people and experience extreme anger when something would trigger my sexual frustration. I learned to hate all things sexual. Even hugging or kissing would lead to feelings of fear, because those things could lead to sex.

Sex felt like someone was pouring acid into a cut and rubbing it in with their hand. For years I would let men have sex with me because they either made me feel like it was owed to them, that I was being a horrible person for withholding it, or I'd just have fear of them leaving me. I'd bite my lip and hold back the tears as much as I could while they were thrusting into me and I was in horrifying amounts of pain. I'd go to the bathroom afterwards and collapse on the floor in pain while sobbing. I wondered why I put myself through that, and why men continued to be ok with having sex with someone who obviously wasn't enjoying it. I had plenty of people tell me it was all in my head, or that I just hadn't been with the right person. Surely if I had sex with them, it would be enjoyable. It never was. It still never is. I have never experienced pleasurable sex, or even neutral, non-painful sex. I have no idea what it's like.

Last year I had a breakthrough in treatment prospects. I saw the right combination of doctors who specialized in vulvar pain disorders. This February I had a full vestibulectomy. I have not had intercourse since the surgery as I am still healing, but I have high hopes. When I touch the affected area now, I do not feel pain. I was used to feeling immense pain even when I lightly touched the area.

If this ends up working, I still have a long road ahead of me. I have post-traumatic stress from everything I've been through, and I have no sex drive, as I've learned to hate sex. I don't even like physical affection at all. I shy away from people touching me, and am very withdrawn in general.

I wanted to share my story so other women know that there are others out there who are struggling...and I am here to talk to you if you need someone. I know what it's like to feel so alone, as you can't talk about this with just anyone. Women learn to hide their sexual problems because society tells them to. I've been through it all...and chances are I can at least provide some advice, or just an ear to listen.

I have a blog that I have started recently on my post-op progess but am unable to post the link here. Message me if you would like to follow it.

Life is short, and every woman deserves the ability to enjoy physical pleasure...

nola218

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Re: Vulvodynia my whole life & Vestibulectomy results

Post  emmy on Wed Jul 01, 2015 10:34 pm

Hello from Indianapolis!

I relate to your story so much. I have been dealing with vestibulitis since I lost my virginity at 18 years old. Like you I thought the pain was "normal" because everyone told me that the first time hurt. I have been told the same things by doctors such as, "It's in your head." "You just need to relax." I've let men have sex with me because I felt like I had no other option. Leaving me in pain and feeling used after every time.

I am now 23 years old and after 5 years of countless doctors, I found a specialist and traveled to DC for surgery. I am now 5 weeks post op from a full vestibulectomy. As I'm sure you can relate, it has been an emotional rollercoaster with good days and bad. My friends are great but they do not understand the emotional toll this takes on someone. Thank you for sharing your story. It helps to be able to talk to others who understand.

emmy

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