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» Vestibulectomy
Yesterday at 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

» 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 …

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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). …

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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


officially diagnosed....

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officially diagnosed....

Post  julia on Mon Aug 02, 2010 9:44 pm

with vulvodynia. by my gyno, so i'm an official member of the club now unfortunately! the consultant will write to my gp for me to take amytriptyline as i have done previously. Thought I would tell you all the news, but I'm in a weird mood about it after 3 years of waiting for a diagnosis, here it is.

xxx

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Re: officially diagnosed....

Post  Sebby (Admin) on Tue Aug 03, 2010 11:36 am


Why on earth does it take them 3years to diagnoise! Its silly...I had to diagnoise myself and eventually the gynea agreed!

Welcome to the club then, I should make up sum sort of memebership badges lol Lets hope we will all be members of the 'Im now out of pain' club very soonnnnnnn!!!

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Re: officially diagnosed....

Post  Julie on Wed Aug 11, 2010 6:55 pm

I was just prescribed amitriptyline (elavil) today as well... any progress? I didn't know how I felt about the idea of it being a nerve/pain receptor problem but any relief would be good!

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Re: officially diagnosed....

Post  Sarah001 on Wed Aug 11, 2010 7:19 pm

Funnily enough I keep being sent away with information leaflets that imply Amitriptyline is a temporary thing for vulvodynia and after 6 months or so most women should be able to come off it but that's not what I'm reading online from real women!

I was really worried about side effects from the Ami when I was given it for my musculoskeletal pain and the majority of people I told didn't help by claiming it would make me "like a zombie" and "completely loopy" so I started by chopping the tablets in half and taking half the dose to see how I felt. After a couple of weeks I'd got past feeling drowsy so I went to a whole tablet and the drowsiness started again so I'm working my way through it again until I up the dose some more. I get a terrible dry mouth with it though and have to drink nearly constantly to be able to speak!! If you keep taking it the side effects do actually seem to decrease as your body gets used to it so it's not too bad and I would liken the drowsiness to how I feel if I have a big glass of red wine so it's quite nice as long as you don't have to drive! I'm not at a high enough dose to get much pain relief yet but I'm working on it.

What bothers me is just because we can't feel our clothes rubbing on the skin and making it redder and sorer doesn't mean it isn't still happening so I try and stay sensible about what I wear and do etc.
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Re: officially diagnosed....

Post  julia on Tue Aug 17, 2010 1:03 pm

that sounds so bad Sad

I was on amytriptyline for this beforea bout 2 yrs ago. I can't remember how much it helped because I was on a cocktail of a lot of different things at the time.

But I do remember when I came off of them I felt very low.. damn antidepressants.

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Re: officially diagnosed....

Post  Sarah001 on Tue Aug 17, 2010 1:46 pm

Do you know Julia I find if I miss one tablet I get really irritated! They must be having a calming effect on me I think. My partner says I'm a naturally irritable person so when I don't take a tablet I revert back to my normal self Rolling Eyes but it feels alot worse than that and I feel so annoyed all the time. For the first few days I took them I actually felt very depressed and down but it does say in the leaflet they can do this. Weird isn't it? An anti-depressant makes you more depressed to begin with! I'm not a fan of taking medication but I frankly can't deal with all my joint pains, the Fibromyalgia and this hateful vulvodynia without them so I'm resigned to a life of medication now.
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Re: officially diagnosed....

Post  Sebby (Admin) on Tue Aug 17, 2010 7:33 pm


Im on Citalopram and Buspirone for anxiety anyway so I dont think it would be a good idea to change to another anti depressant..I do think I would get side effects.

Im pretty scared also of trying the anti-convulsants as they have a warning of increased risk of depressive symptoms.

I used to self harm so I have to be careful

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Re: officially diagnosed....

Post  Sarah001 on Tue Aug 17, 2010 7:39 pm

What about good old fashioned co-codomal Sebby? It's quite a good painkiller if you can take it with your other meds.
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Re: officially diagnosed....

Post  jules on Thu Aug 19, 2010 2:36 am

Hey everyone..i have written under other topics..this is to Julia. If the amitrip. does not work, try Lyrica. Lyrica has taken my pain away by about 95%. it has been a miracle for me. it is used for people w/ fibromyalgia. I like others, have tried everything else. i never did try amitrip. but, tried it years ago for headaches and for me..i became a zombie. i have had no side effects w lyrica. i'm on 150 mgs. can go up to 300%. i am slowly tapering off my neurontin (was at 3000 mgs)...that helped cut the pain by about 40%. now that the pain is controlled, i am doing physical therapy. i am working w/ a pelvic pain specialist. i am truly hopeful that this will get even better.

keep on trying! if amitrip. doesn't help try Lyrica. I am so happy.

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Re: officially diagnosed....

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