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» What helped (and practically cured) my Vulvodynia
Today at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Today at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 3

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


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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