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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

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


All knew to me!

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All knew to me!

Post  Guest on Thu Feb 17, 2011 3:45 pm

Sad Hi everyone.

Am knew to the forum and this is all very new to me and by reading other peoples stories, slightly different.

Havent been diagnosed with anything yet, but am very swollen, red and sore.

This all started for me in September of last year when stupidly I left a Tampon in and didnt know about it Embarassed It was in for two weeks and had been pushed right up to the top! Awful. Went to the GUM clinic who found it and pulled it out. Was kept in over night as i felt unwell and very sore and irritated down below. Was given strong anti biotics through a drip to clear up any infection. Still wasnt feeling completely right after a week on anti biotics so went back to the gp who put me on more anti biotics that made me really poorly and ended up back in hospital with fever and pain in my stomach. Was put on yet more anti biotics through a drip even though my blood results showed no infection! Finally they stopped all anti biotics and was told to go home and use just water for the inflamation down below.
Took me a couple of months to recover from the effects of all the anti biotics and was weak for ages and very swollen and sore down below. Couldnt walk sit or wear any under wear. After various steroid ointments, thrush creams, pesseries etc still not much better.
This whole experience has turned my world upside down and i feel very depressed. I have gone from an active 35 year old full of life to being stuck indoors in my pj bottoms. I feel like every time i walk i am making the swelling worse.
I am now under a gynaecologist and a dermatologist and waiting for a vulval clinic appointment in March (which i have waited 4 months for).
The steroid ointments made everything worse. Was perscribed Trimovate by the dermatolgist which i have been using for a week and so far i think it has taken some of the swelling down but can only use it for another 7 days max as it is so strong.
Just cant see a light at the end of the tunnel at the moment and have forgotten what life used to be like. This has taken over my life and bothers me 24/7. Just dread everytime of the month as this irritates me even more.
The doctors have said that one of the anti biotics i was on can give you an allergic reaction like this or the tampon itself being in for so long has irritated everything. Just hope in time it heals itself!
I am glad i have found this website to read everybody elses experiences and share stories.
Am also taking anti allergy tablets.
Sad Sad Sad Sad Sad Sad Sad

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Re: All knew to me!

Post  Sarah001 on Thu Feb 17, 2011 3:51 pm

Hi Joanne, have the doctors made sure you don't have a bacterial imbalance after the tampon incident? I'm assuming they have swabbed and checked for bacterial vaginosis? And cultured a swab and let it grow in the lab to see if it's ok? It wouldn't necessarily show in blood tests if it's an imbalance of the normal bacteria down there. Also get them to check your ph if you can persuade them, if that gets out of whack it can cause alot of problems. If they haven't tried the above things get a bit pushy and make them. Also take plenty of acidophilus to help your body get back on track. It may well sort itself out over time.
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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 4:00 pm

Hey!

Yes had swabs done about 5 times, whilst in hospital and by the gyni i saw 4 weeks ago. How would they check for ph, Had a swab done for thrush that came back negative. Gyni has said that the inside has all healed up because that was all so swollen too. Just the outside that is taking its time.

Thank you for your advice, so nice to have someone to talk to!


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Re: All knew to me!

Post  naomi on Thu Feb 17, 2011 4:30 pm

hey hun!

well there's a few regular girls on here and we will be here for you. Pick our brains to see if we can work something positive out.

Have they tested you for DIV? Desquimitive Inflammtory vaginitis (excuse the spelling...long day). Google that. I thought it could have been that at first and they tried some treatment for that (i forget the medication but have got it written down somewhere). It helped with the heavy discharge etc.

Also, sounds crap but i used Predfoam at one point (in the liust of diff medications)...its a steriod foam that folk usually use up their bums Smile but i had to up my Lady La-la.

Just it sounds more like infection from ur description. Have they taken biopsies?

Try to keep calm (pot, kettle, black!) and rest up. We're all here for you

Nai xxx
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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 4:56 pm

Thank you so much for all the information! Will look that up!
So far they have only said its an allergic reaction to the anti biotics, all swabs came back clear.

Have good days where i am really positive and other really dark days when i think i will be like this forever! I get really disapointed when the creams i am given dont work and actually make it worse! I am looking forward to seeing the vulval specialist in March! Think my doctors are sick of the sight of me. Sure they think im loosing my marbles, always cry when im in there!

Has any of the medicines worked for you?

Jo x


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Re: All knew to me!

Post  Sebby (Admin) on Thu Feb 17, 2011 7:36 pm


Hi Joanne and welcome to the forum..i've just said hello to you on our facebook group Smile

I was on antibiotics for years when younger for acne and I reallly do believe that this did contribute to the V as they kill the good bacteria as well as the bad.

Acidolphilis is a great idea, I've started to take it myself

Also cut down on sugars and up your B viatmins..I keep getting low folic acid levels and just recently read that uping this is one of the natural remidies for Vulval irritations

Vulval clinic is deff the way to go, Im going to get refered on Tues...down the drs again, I dont know why they just dont let me move in!

Hope we can help you find a solution and we are all here to virtually hold your hand Smile

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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 7:46 pm

Thank you so much! Will try everything you have suggested! The antibiotics made me so ill! Took everything out of me! Its so annoying because i didnt need them all anyway! At one point i was on a cocktail of three at a time! Awful! Definitely think this has what has triggered this off in me! Just wish it would boreoff now!

So nice to know that this is here for so many people feeling so alone and depressed in it!

Cant give up hope Very Happy

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Re: All knew to me!

Post  noni on Thu Feb 17, 2011 9:30 pm

Hey Joanne!! Smile

You will get the advice and support u need on here!

Just as many of us have had to self diagnose ....you might need to self medicate, meaning....what some of us have done is actually do the research and bring it to our GPs to get prescriptions...etc etc

Im on Ami now...brought the Vulvodynia survival guide to my GP showed her the page on tricyclics and she wrote up 20 mg a day for me!

We;re all really guinea pigs on here and its a crap shoot!

But...fuck it...you are in good company here!!

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Re: All knew to me!

Post  Guest on Fri Feb 18, 2011 8:19 am

Hi

Are they anti depresents?

Cant beleive how many people live with this! Before this started for me i had never heard of it! If i was ever sore down there or had thrush i would use cream and it would go! Just cant beleive im stuck with it for now!

Thanks for all the info

x

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Re: All knew to me!

Post  noni on Fri Feb 18, 2011 11:55 pm

check out my web site www.livingwithvulvodynia.ca

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Re: All knew to me!

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