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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

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

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: 1

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: 0

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


new to the group

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new to the group

Post  maryjane on Fri Mar 18, 2011 9:59 pm

Hi everyone

Although I have never been diagnosed with vulvodynia I know I have it. About 5 years ago i just woke up in the night with dreadful burning and pain down below. I eventually went to my doctor who agreed I may have it and started me on Amitryptilene. It took a couple of months to work but eventually the pain went and I haven't had it for 4 years. I haven't been taking the medication so thought great I am cured but no I have had a really bad flare up again and I am feeling suicidal I think I will start taking the Amitryptilene again and see if it goes away. I just don't think I can cope with another year or so suffering this dreadful pain. None of my friends know what I am talking about they are lucky and then I think why has this had to happen to me. It is nice though being able to share my feelings with other sufferers. Thanks for listening - just feeling down at the moment tomorrow is another day!

maryjane

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Re: new to the group

Post  Mouse on Sat Mar 19, 2011 12:05 am

Hi Maryjane,

Welcome!

It's really easy to get down, this is a shite condition and just wears you down. Be kind to yourself. Try to find something you enjoy doing and have something to look forward to each day.

This is a whole body process so taming a rampant mind is essential. Have you got a therapist? Most of us do, it's a really good idea to find someone you can unload to. Other people just don't get it. If you haven't had a chronic pain condition how could you know what it's like? I get some empathy from a couple of my friends, others just stare blankly or say things like I thought you were better now... hmm this is because I just grin and bear it. There was a really good blog on here about that, I'll have a crack at finding it.

It's really good that the ami works for you! Try to do simple feel good things. Sitting in the sun, try to socialise, meditation or some exercise if you can. Things that give you the natural feel good chemicals. I've completely revamped my diet.... UGH! And believe me I have the least willpower of anyone I know.

I find getting active to find a cure gives me a great focus. Although some days I just wallow in it and that's ok as well.

Can you recognise a trigger? Have you had more stress in your life?

There are a wonderful group of ladies on here.

Take care
Vicki

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Re: new to the group

Post  noni on Sat Mar 19, 2011 4:40 pm

Hey Maryjane,

I cant relate a bit to your story....

Today I literally called up my pharmacist in tears because my Ami prescription is running out and I wont be seeing my doc for another couple days!!!! I need better organization and time planning skills!!!! DUHHHHH

This is so shitty.

Take care everyone,
noni
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Re: new to the group

Post  Sebby (Admin) on Sat Mar 19, 2011 8:36 pm


Welcome to the forum Maryjane

If you had sucess with the Ami before then deff try it again. It may take a while before it works as it has to build up in your system but keep perservering

I couldnt go on Ami as I am currently on Citalopram for anxiety but have reduced my dose to 10mg so will soon be off it. At least then I can try Ami. Im currently taking Pregabalin. Its been about 5 weeks or so and the flare ups seem to go quicker so I am remaining hopeful

I have also felt suicidal and have just not wanted to go on. These feelings pass as you said tomorrow is another day. I have found the ladies on this forum really lift my spirits.

We also have a secret facebook group for members of the forum so if you are interested inbox or email me


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