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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


Hi Im from Australia :)

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Re: Hi Im from Australia :)

Post  Mouse on Tue Feb 15, 2011 11:16 pm

Hey everyone,

I think PT is the American version, we kiwis have physio.... if we are really lucky!

Stompy, mine has gone the same way with the lovely pelvic floor probe and not even dinner and a movie first!!! Awkward because she watches my face to see when the pain tapers off. Hmmmm. I get REALLY anxious before I go.

I have now aggravated my sciatic nerve which runs from the backside down the leg. This is because I had to adjust the way I sit to accommodate the V and it made my other parts angry. I get physio on both now, I'm not sure which is worse to be honest. I've also found I really tense everything up and it's a process to relax when she says. I think I've relaxed but it's not even half way there.

Louise I'll meet you at the Melbourne clinic =)

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Re: Hi Im from Australia :)

Post  Sebby (Admin) on Tue Feb 15, 2011 11:50 pm


Thanks for the book title stompy I will deff look into it!

I do wish we uk girls had such a clinic!!

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Re: Hi Im from Australia :)

Post  noni on Wed Feb 16, 2011 12:03 am

Haha...sorry about the PT ref...<<

Just wondering...what does it mean when they say to ``drop your pelvic floor``??? Anyone know?

How about at home techniques? Or is it a must to see a therapist one on one?

Thx Smile
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Re: Hi Im from Australia :)

Post  jules on Wed Feb 16, 2011 3:01 am

welcome to the new ladies. i'm so busy visiting our Vulvodynia Facebook group page that i don't make it to this forum as often as i used to. i'm glad you all are finding commonalities. here in the US we do call "it" physical therapy. i had no idea what a physio was when i first joined this site. they do the same thing as your people..biofeedback, dilators, fingers...etc. Me not so interested in it anymore..didn't like for my "area" to be messed with. today, i'm just dealing w/ the raw skin feeling and it's bright read...now you have a visual. hmm..maybe it will get better soon...it goes in waves. if you ladies are not on facebook w/ us...please join. it's nice to have friends who "understand" your pain. k...ttyl

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Re: Hi Im from Australia :)

Post  Sarah001 on Wed Feb 16, 2011 8:23 pm

Noni when they say drop the pelvic floor it's the same as when you relax it to pee, takes a bit of getting used to and hard to do it all the time like we're supposed to but practice makes perfect.
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Re: Hi Im from Australia :)

Post  noni on Thu Feb 17, 2011 1:56 am

thx!
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Re: Hi Im from Australia :)

Post  Frustrated and had enough on Tue Aug 23, 2011 10:18 am

Hi Emma,

How are you going with the cream you are trying? I have heard of it and would like to get my hands on it, just having a little trouble (got a referral to a specialist that knows nothing about Vulvodynia..not so helpful). Is it worth trying it?

I'm 30 and have had Vulvodynia for about 10 years now! It took a few years before I was diagnosed and then some unsuccessful treatments. I keep getting thrush which means I can't treat the pain I am having until I'm clear. Every time the thrush goes, sure enough it comes back. I found that physio helped the pain, but gave me thrush. So had given up and just dealt with it all for a few more years. Recently I realised I'm not getting any younger!! I got engaged a couple of months ago. I have a lovely man who has been really understanding, even though I know it's very frustrating for him as I have no desire to have sex..it just hurts too much and then I just get depressed! We would like to start a family in the next couple of years so really wanna get rid of this pain!!!! I think I'll try get a referral to angelique's dermatologist, she's like 3 mins from my house!!!!

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Re: Hi Im from Australia :)

Post  Sarah001 on Tue Aug 23, 2011 5:10 pm

Sorry if I'm being a bit dim but how did physio give you thrush??
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Re: Hi Im from Australia :)

Post  Frustrated and had enough on Fri Aug 26, 2011 7:46 am

Hi Sarah001,

That's a great question..if only I knew the answer!! It seems after any little bit of exercise or movement down there the thrush flares up again. It may not actually have anything to do with it, it may just have been coincidence?

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Re: Hi Im from Australia :)

Post  emma on Thu Nov 24, 2011 11:47 am

Hey ladies,

Sorry that it has taken me so long to reply. I forgot that i had started this thread and can i just say that although as frustrating as this condition is, i think it has definitely made all of us better people! Im strong and confident and im sure you all have that strength too!

So, I have recently had the surgery. I was fed up with having absolutely minimal or no results from various treatments and i noticed some of you have asked if the cream worked, well as you can guess - it didnt make a difference, only frustrated me more. You know what, I was sick of getting excited over a new revalation that could cure me and it didnt. When i first went to a doctor and mentioned that i had a problem to this day has been about 4 years. Long process, a lot learnt.

So yes i have had a surgery. Could hardly walk/sit/lay/sleep/breath without my body feeling like it was being ripped apart for 3 weeks.

Totally worth it. Ive had great results and the pain in that particular area - gone! i have a bit of pain higher up but it is getting better as i have just started using the dialators to stretch it out.

Im still wary as i havent got a partner (which is good because im no where near 100%) but Im so glad ive had it done.

I have a question to ask you... How do you handle friends - have you told them what you have?, because the only people who know that i have this condition are my family.... so when my friends start talking about sex, i just hate it. What do you do in those situations because i never lie but its something i just feel i have to lie and make stuff up about otherwise conversation gets akward.

Em xo





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Re: Hi Im from Australia :)

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