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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» 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

» 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

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

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

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


My journey - believe it or not it's a fairly positive one!

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My journey - believe it or not it's a fairly positive one!

Post  Georgia H on Tue Jan 28, 2014 12:33 am

Hi Girls,

I'm new here (but not to V)! I've been reading this forum on and off for the past few years and it's helped me greatly. It's taken me this long to actually join up - selfishly, I've never wanted to participate as it felt (in a weird way) like I was giving in to the condition. It finally dawned on me that my story might actually help some of you guys - so here I am.

My journey with V is fairly straight forward and began in Sept '11 no real obvious trigger, typical nerve pains, run around from GP for 3 months until (I think I read somewhere on here) about Wendy Reid and coughed up the money to see her privately. I should mention here that I was in a fairly new r/ship at the time and sex wasn't an issue at all. I could and still can have completely pain free sex. She diagnosed me with unprovoked vulvodynia and put me straight onto Lyrica which was great. Worked pretty quickly to dull the pain. I was on it for 4 months when I decided to come off it and I was left only with some minor pain on one side which was mostly radiating through my thigh. Wendy sent me off for PT for this. Whilst waiting for the PT and weaning off the Lyrica (by this point I was mostly pain free but not 100% although the pain wasn't bothering me too much) I decided to see a McTimoney chiropractor in Worthing (she's also been mentioned on here) for the McTimoney pilot study. She was brilliant. Within month or so of seeing her I was 100% pain free. It's hard for me to say if it was the chiro or the lyrica but I'm fairly certain it was the combination of both these things - at the right time - that lead to this remission. I don't think one would have worked without the other. In total I was "in treatment" for 6 months.

I went 10 months 100% pain free and medication free with no sign of it returning. In April '13 it came back in a mild form (mostly the one sided thigh pain) and I booked 3 sessions with the chiro and it was gone again. This episode lasted only about 3 weeks.

In Sept '13 it came back again but this time the chiro sessions haven't quite been as helpful as they were in April. There are certainly symptoms that she can resolve - the one sided ones for sure. This time I'm experiencing an all over prickling sensation - more or less constant - over my pubic hair area that is stubborn and doesn't want to go! After 3 months of trying to get rid of it without medication I went back to Wendy Reid and this time I'm trying amitriptyline instead of the Lyrica. I know most of you probably think I'm mad as Lyrica is hailed as the wonder drug for vulval pain but I was on it for 4 months and gained 10kgs in the first two. It was petty hellish! I really wanted to try something different this time as the V was one thing, but the weight gain was equally as taxing on my mental health and wellbeing. I know a few of you mentioned you wanted to try Lyrica but just be careful. I know not everyone experiences the same side effects from meds but I really wish someone had told me about the weight gain before I went on it. Wendy said to me that whilst they work quite differently on the nerves, the end result is usually the same (it's just that ami takes longer to work).

So far the ami has been ok. I've only been on it 5 weeks and am up to 50mgs at night. I'm not 100% but I think it's starting to kick in. Its hard to tell tho as I'm so up and down I'll have a few good days and then a bad one but I think overall it is getting better. From memory - this is what happened last time. So far not too many rough side effects. If ami turns out to be useless then I'll bite the bullet and go back on the Lyrica but for now I'd rather wait and see.

Basically, I want you girls to know you can and will find a way to treat this. I've done it once and I'll do it again. It's just a matter of finding the exact right combination of treatments. There are things that I have suspicions trigger this but I can't be 100% sure. Just like its probably going to be a combination of treatments there's probably a combination of causes too that make something like this too hard for our bodies to bounce back from. Autoimmune or whatever else. It's so easy to get caught up reading negative stories on the internet but I see mine as one of the good ones. Obviously the fact that it's come back isn't IDEAL but the fact that I've resolved it once is proof that it can be treated and you can be pain free (and that finding a good team of dr's, gynae's, physios, naturopaths, osteopaths, chiros etc is the key to getting there).

London girls - I live in London too and would love to meet up sometime before the October meet.

Sorry this was ridiculously long but I wanted to try and include everything in case there were bits that might help some of you.

Any questions on the specialists I've seen/mentioned don't hesitate to ask.

Xx G

Georgia H

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Re: My journey - believe it or not it's a fairly positive one!

Post  mary jane on Tue Jan 28, 2014 10:29 am

Georgia, you are more than welcome to come to our support group meeting! the next one is on the 22 of March at St Cyprian's church

https://sites.google.com/site/londonvpsg/meetings

the girls are lovely and after the meeting we usually head for tea/lunch in the marylebone area.
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Re: My journey - believe it or not it's a fairly positive one!

Post  fightforacure777 on Tue Jan 28, 2014 4:04 pm

Thank you for sharing your story, and reminding us that their is hope and a light at the end of this tunnel.
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Re: My journey - believe it or not it's a fairly positive one!

Post  tinkerbelle2 on Tue Jan 28, 2014 8:37 pm

Hi Georgia,

Thanks for coming on and sharing your story! I took a while to actually sign up too because it felt like effort to write about my story from the very beginning , but now I can't shut up ! lol. And it also felt like I was admitting there was a real problem, with a real name, whereas before i'd almost been in denial and just getting on with life. But it has got to the point now where I can't push it to the background anymore. The pain is very much there, and if anything it's more nagging than ever before. I am feeling pretty confident that it's going to go away, with the right help and understanding. I'm in a way, excited.

Currently on amitryptline only 20mg atm (one in morning and one at night - no change as yet but it's only been 2 weeks). That's interesting about the lyrica! I hope ami doesn't make me gain too much as i've already been comfort eating A LOT!!

T x
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Re: My journey - believe it or not it's a fairly positive one!

Post  Delilah1 on Fri Apr 11, 2014 10:01 pm

Hello Georgia! Thanks for sharing your story! How are you feeling now?

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Re: My journey - believe it or not it's a fairly positive one!

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