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

» vestibulectomy success
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» MY STORY & Vestibulectomy 2/8/17
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» Pain aftee vestibulectimy
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» Freaking out because I don't think surgery worked HELP!!!!
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» 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


My Story of living with Vulvadynia/ Vestibulitis

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My Story of living with Vulvadynia/ Vestibulitis

Post  nadja on Wed Jan 12, 2011 4:24 pm

Hi Everyone I joined this forum last night after I was lying on my bed in tears again Sad
I am so sick of it now like all the rest of you it started as an infection UTI then thrush but kept coming back and the so called doctors don't know ANYTHING about it until I asked to see a specialist. All this happened over 3 and a half years ago and in a way it was a relief to put a name to the condition that wasn't going away.
I was put onto antibiotics then the Ametripine one... and another as they never really helped. So then I decided to try the natural approach. I do still use Hydromol ointment which desensitises the area it looks a bit like vasaline but has helped. I normally use it and press down hard with my finger to get the area used to touch and it is a lot better now for that. I also use pure aloe vera from the plant and that doesn't sting because it's cooling and healing. I only wear 100% cotton knickers now NEVER jeans but skirts and baggy joggers or leggings. I find that since having spiritual healing and taking Acid Redux tablets it has helped and now drinking the oxygen water too which is good for a whole number of conditions... I sometimes take codeine if in REAL pain but I really do think it is improving it's worse in the anus area now I always feel like it moves about a lot do you? I can't stand the feeling when it's in the anus as it's deep and tight and you feel lower back pain too with it and all around the hips....
I do believe that STRESS is a major trigger with this condition which is why I ended my relationship back in June last year as he wasn't making me happy and I'm also not happy in my job which I am looking to change currently. Maybe when I am really happy with my life will this then go away. I know it will go as I have read articles of women who have got rid of it. It's just living with it when you have it feels so lonely and miserable as no one really understands. I am so glad I can talk to people on here who know what it's like so I don't feel so alone with it. I have lost friends over this as having to cancel on plans last minute due to the pain I was in where you literally just want to lie down and cry. I have had the occassional one who understands but it's not easy.
Well thanks for reading this and I ask the healing angels and for a miracle cure for us all to have a normal feeling body again.
Love and Light
Nadja xxx

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  Sebby (Admin) on Wed Jan 12, 2011 8:25 pm


Hi Nadja and welcome to the forum Smile

Mine too started with what I thought was recurring thrush infections and a few must have been.

I was on antibiotics for acne for years as a youngster and since have found out that the long term use of antibiotics are thought to be a possible trigger for vulvodynia and re-ocurring thrush.

I was going through a great deal of stress too when I developed it but as I have had long term anxiety since I was a teenager im not sure if this was the major cause..I believe mine was due to a combination of the long term antibiotic use and pelvic floor dysfunction as I also have had vaginismus since I was a teenager.

Im currently sorting out getting refered to a womens health physical therapist, and using dilators and soon bio-feed back. Maybe this is an area you could look into?

As for losing friends the ones you keep are the real friends!

You have us to talk to and we do understand as we are going through the exact same thing. I have had a horrible flare up and have just come on my period so am so going to try to have an early nite with some co-codermol and the radio..

Take care

Sebby
xx

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  Mouse on Wed Jan 12, 2011 9:02 pm

Hi Nadja, welcome!

My vulvodynia started after a small surgery on my bartholins glands, it was nastier than I expected and my therapist says my body may be revolting because of the intrusion. Well whatever it's doing it's time to stop!

I've been trying a more natural approach as well. I have a water ioniser which produces higher PH water, is that what yours is? I've looked at reducing acid foods, sugar, coffee and alcohol - besides the temptation to just get drunk Smile Stress is definitely a trigger. I'm now not working as well. I went down the drug route last year and found working impossible.

I'm now trying really hard to improve my mental health. Unfortunately this also involves exercise ahhhhh I've never been keen. But exercise releases the natural feel good chemicals and they are free Smile I think the only way to have the energy to beat this to be mentally strong enough. Even if the exercise is a 5 minute walk. I'm also working on face time with friends, it's bloody hard because I'd rather be a hermit.

As for friends not getting it, you're right. My husband gets it but still doesn't understand that it's all day every day. So I guess we go on forums to vent and get support from people who are living this and forgive our friends a little. I wouldn't have understood the impact this has before I got it. I describe it as a chronic pain condition though and that tends to be self explanatory.

I also have pain in the backside sometimes. Depending on what type of vulvodynia you have, there are some theories that the pudendal nerve is the culprit. That runs a course from front to back. Have you had physio? I'm going this afternoon for the first time and I'm bricking it. I have most of my pain of the left side and the specialist said I have bunched up muscles there. Yaaayyy I can't wait for those to get a working over.

We are all here to talk too! A lot of us have potty mouths so feel free to vent if you like Smile
Take care
Vicki

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  noni on Fri Jan 14, 2011 10:59 pm

Big hug Nadja.
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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  naomi on Sun Jan 16, 2011 11:04 pm

"potty mouth" Mouse? talk for yourself!! Smile heehee just messing!

Yeh feel free to vent away...I know I do and I'd go mad if I didnt!

Have you been the the john radcliffe in oxford?...Ive done the rounds and been there...got the tshirt Smile

Im near (ish) you, about an hour away in Cheltenham.

pleased to meet you xxxx
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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  nadja on Mon Jan 17, 2011 5:11 pm

Heyyyy so you are Naomi. Would you want to meet up sometime for a drink we could drive half way?

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Re: My Story of living with Vulvadynia/ Vestibulitis

Post  Reader on Tue Feb 01, 2011 6:43 pm

Hi Nadja

Ive just read your story and can really relate to what your saying.

I cant bear to part with my jeans, they are all I wear! do you find it really helps? It hurts when I wear them sometimes if im sat down and they are tight in my crotch.

Have you found anything else that helps ease the pain?
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Re: My Story of living with Vulvadynia/ Vestibulitis

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