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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


SINCE I WAS 5

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SINCE I WAS 5

Post  omgitszoee on Sun Jan 05, 2014 9:11 am

Hello.. my names zoe (:
I have been going to the doctors with this problem since I was 5 ! back then they just assumed it was cystitis. as it got older it got more often, I was just when I got nervous and excited and now its a constant pain. im now 20 but I wasn't diagnosed until I was 16 !

Im on Gabapentin but im at the highest dose im aloud. I also have to take co-codamol most days. I Hate it so much as its very hard for me to keep a job because of how un reliable I can be Sad
luckily my current boss is very understanding but I hate letting her down and missing out on the money!

Im currentl seeing a physio who is very interested. she said I can tighten my pelvic floor but it takes a long time to relax? she has given me some exercise to do but this last week ive been off work every day with the pain !

ive not been abused or had any trauma as a child so I have no idea why it started so early. does it eventually just go away? I can not go out with friends because I must know I can get home if I need to and if I get too excited it will come on. ive not been able to drink like a normal teenager and I just want my life back :'(

when the pain is very bad I find the only thing that helps is holding ice on my fufu !!
Has anyone else had it for such a long time? how old where you all when you got vulvadynia?

omgitszoee

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Re: SINCE I WAS 5

Post  mary jane on Mon Jan 06, 2014 11:06 pm

aww you poor thing,only 19....i'm 26 and have had this crap for 5 months. I'm doing my second univ. but I manage by resting A LOT and taking medication.

you don't say what your symptoms are ....there is a big forum for intersitial cistytis with helpful posts, a lot of the girls there have overlapping conditions like urethra pain and vulvodynia, etc.

ic-network.com

I honestly recommend you to try a urogynaecologist

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Re: SINCE I WAS 5

Post  Alana3 on Mon Jan 06, 2014 11:44 pm

I used to not be able to drink either than it went away... I have no idea why. I used to get a lot of bladder infections but...? They went away I guess

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Re: SINCE I WAS 5

Post  Alana3 on Mon Jan 06, 2014 11:44 pm

That wasnt helpful just trying to say you arent alone!

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Re: SINCE I WAS 5

Post  omgitszoee on Tue Jan 07, 2014 4:18 pm

thanks guys its good to know im not alone !
ive had my urine tested by the doctors a lot and no hope Sad

the exercise ive been given doesnt work as ive had 5 days of work off in the last 3 weeks !!

Hopefully next time i go to the physio she will try somthing else
Thnks though !

omgitszoee

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Re: SINCE I WAS 5

Post  omgitszoee on Tue Jan 07, 2014 4:19 pm

and it sort of feels like im being hit in the fufu with a spikey hammer thats on fire !! weird description

omgitszoee

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Re: since I was 5

Post  Sunflower82 on Sun Feb 02, 2014 8:49 pm

Dear Zoe,
Sorry to hear u have suffered for so long, I have had problems since I was 21 and I'm 32! I also suffered from cystitis when I was young about 8 ish I think ! Are u seeing a women's health Physio? What type of exercises were u doing! I've seen a women's health Physio for a couple of years now in the beginning it did get worse before it got better, half way through when I could know longer go I saw a Physio on the Nhs and it really didn't work out I didn't feel she listen to what I had to say and it seemed to be a set pattern of treatment,I had three sessions and the pain was so bad!

I stuck with the private Physio and this make a huge difference !

Hope this helps

Kt

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Re: SINCE I WAS 5

Post  omgitszoee on Tue Feb 04, 2014 5:36 pm

Awwah thats good to hear that someone else had it so young!! Yes im seeing a nhs one but she is great, she says we will sort it this year!! Ive been given some dialators to try! If they don't help she is sending me for scans to see if its a trapped nerve! Xx

omgitszoee

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Re: SINCE I WAS 5

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