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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


Finally found what I think is wrong with me!

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Finally found what I think is wrong with me!

Post  Emily20 on Sun Dec 26, 2010 11:31 pm

I've been suffering for the past 4yrs or so with what I thought to be Cystitis, however, I've always known that it wasn't quite the right symptoms for cystitis. Anyway, with another bout of what I thought to be cystitis today, I got quite sick of it and decided to research further and found Vulvodynia - symptoms match almost perfectly and I feel pretty relieved. However, I've yet to find a doctor in my area good enough to diagnose me with it, if this is what it is. My current Doctor keeps diagnosing me with cystitis, however the pain had always been external, and has made me unable to work, sleep or go about my daily life as normal. It only comes on in bouts of pain and I don't always have it. However, when I do, I need to sit on the toilet for hours on end until the pain has gone as this seems the only way to relieve it. I also find drinking lots of water helps which sounds like a water infection but all the symptoms of Vulvodynia match up too.....this is now the only thing I'm doubting. I also get dull aching/burning pains in the vulvic region when I sit for too long which I've always thought strange until now. After sexual intercourse I get what feels like a friction burn - another symptom explained! I was also wondering where everyone is from? I'm from the UK and it seems most cases are in the USA, and unfortunately all the treatment seems also to be in America. Just wondering if anyone knows of anywhere in the UK and if anyones had the similar symptoms of prolonged time on the toilet and drinking lots of water to relieve pain? Any help would be fantastic!
Thanks. :-)
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Re: Finally found what I think is wrong with me!

Post  Sebby (Admin) on Tue Dec 28, 2010 11:38 pm


Hi Emily and welcome to the forum

Im from the UK..and so are many of the members on here. We also have members from the USA and other countries..

When I was first having the symptoms on a regular basis I thought it was thrush and so did the GP. I got a little suspicious after my tests came back negative of course! Its so common for drs to either think its a yeast or unrine infection.

Im guessing the main reason so much time on the toilet helps is that you having nothing putting pressure on your vulva area and so find the pain calms down. I too find sitting painful so tend to sit with my legs up on the sofa or lie down. The pressure on the vulva area does make the syptoms worse. I get stinging, burning and rawness. Its like if any part of your body was sore pressing it makes it feel worse!

A good tip one of our members has given is to get yourself a doughnut cushion..it has a hole in the middle so you can sit on it and have no pressure on your vulva area..much like a toilet seat!

I can also relate to the friction burn type pain after sex..I have always had this after sex so its been an issue as long as I have been sexually active. I am not in a relationship at present but in terms of sex I have found that being intially on top helps as you have more control of thrusts and also lots of lube!! Also on the painful days try other forms of sexual pleasure and don't worry to much if you cant always have intercourse..Ive never been the type of girl who could 'go at it' every day lol so have had to be quite creative!

I havnt tried the drinking water thing..I mite just do that although I can see that I will be then spending a lot of time on the loo! There is one theory that there is a certain substance called oxalates which are thought to irritate vulva tissues as its found in urine and that by drinking lots of water helps to decrease the absorbtion of these oxalates so they will of course irritate the tissue less. There is also a special diet that you can follow to reduce oxalates in the body..unfortunatly oxalates are found in chocolate and tea!! Anyway I did read in the 'Vulvodynia Survival Guide' that by drinking lots of water you can reduce the Oxalate crystals in your urine by up to 80% anyway by drinking lots of water whereas following only the diet will not reduce it half as much..

As for treatment in the Uk I suggest asking your dr to refer you to both a Vulva Clinic..yes we have clinics just for vulvas! who knew! and also a pain clinc. They can then both look at various treatments from medications to nerve blocks etc whatever works for you. I also suggest as many of the members have suggested to me to get physical therapy. I am getting refered for this in the new year and have received two recommendations from emailing this website

http://www.acpwh.org.uk/content/

I hope some of this info can get you started..dont give up if one treatment does not work keeping going thats what im doing

Godbless and Take Care

Sebby
xxx

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