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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» Recently Diagnosed.... Help!
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» 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


vulvodynia and pcos

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vulvodynia and pcos

Post  angelfangs on Fri Oct 26, 2012 11:49 pm

hi

i'm having a lot of issues related to vulvodynia and pcos, i'm going to bullet point so its easier to read.

*diagnosed with pcos at 12 after ultrasound and blood test.

*on different pills for 7 years until i was 19 years old, both combined and mini pill.

*always had heavy/painful/irregular periods.

*saw 3 different gyns at the local hospital from 2005-2009 when i was taken off all medication and told i was discharged.

*had some very traumatic examinations by evil unsympathetic gyns and gps. i found this was due to them not being able to get inside my vagina only last year when my history of not being able to use tampons at all and the exams just clicked with something i read on the internet.

*was referred to new gyn at the local hospital, saw gyn in december 2011 and was examined to confirm i had a microperforate septate hymen that wouldn't let anything into my vagina. this was painful and i had sore burning a pain afterwards that wouldn't go away. a few days later took and canestan tablet and used the cream for "thrush".

*symptoms stayed so i visited a gp who examined me and took a swab and a urine test. negative for bv, thrush and urine infection but the dr told me to take another canestan tablet and eat probiotic yogurt.

*early january had a hymenectomy under general aneasthetic. only needed one stitch.

*early february i started having random bleeding, tummy pain and clots of endometrial lining (so far 1 in february, 1 in march and 1 in october). went to gp again and tested ok for thrush, bv and urine infection. burning vulva pain still there and by now i'd had 4 canestan tablets, 2 tubes of canestan cream and a ton of yogurt. gp said the tummy pain was my cervix and i was healed ok from the hymenectomy.

*refered to gyn and had appointment in june, she examined me confirmed again it was cervix pain and sent me for an ultrasound scan.

*had ultrasound in july, an abdominal one because i was bleeding and it would have been way too painful for a transvaginal one.

*ultrasound was clear and so was the swab and urine test the gyn did.

*august went to another gp as i still had all these symptoms and and the burning pain in my vulva had go to the point were i couldn't wear trousers anymore. she diagnosed vulvodynia and gave me amitrptyline, i went up to 50mg but it did nothing.

*saw same gp as last point again in september and october, have been refered to newcastles rvi vulval clinic. dr couldn't give me the pill to control the bleeding because of my weight, even though i'm the same weight i was when i was on the pill for 7 years and my weight was never an issue then, i was never weighed and my blood pressure was only measured 2 or 3 times in 7 years. gave me a tiny tube of lidocaine cream, utter heaven but i can't have anymore! Crying or Very sad

*went to family planning clinic because of gp recommendation to try to get the pill. was refused there too because of my weight even though i created imaginary boyfriend and imaginary sex life. the nurse there said some mean things about over weight people/steralisation/sex.

*saw another gp, this time trying the pcos that hasn't been treated for 3 years angle to try to get the pill because i really can't cope with all the bleeding, the tummy pain and vulvodynia at the same time. was refused again because of my weight, this gp sent me to another gp that has an interest in gyn matters.

*saw the next gp on tuesday (its friday night/saturday morning now) and she is the worst dr i have seen in my entire life and i've seen some terrible ones (including a gyn who thought all of his patients diagnosis were wrong so everyone had to be retested and he shouted at me because i hadn't had a period and made me cry, one of the nurses told me i was the 6th person that week who had cried because he was so mean to them). according to her all my problems are due to my "emotional state" and i need counselling or psychotherapy as this is the only thing that will rid me of my problems! she confirms my vulva hurts, my cervix is the tummy pain and i actually have a urine infection that is totally symptomless. after a long lecture about how medicine like the pill can't help me and how shedding clots of endometrial lining (thats what she called it, it looks like fleshy chicken breast stuff and hurts like utter hell when i'm passing them) is totally normal and it happens to everyone. she asks me to phone the gyn i saw in junes secretary as i have not been discharged.

*phoned hospital, gyn secretary says i have been discharged. chaos and a dozen phone calls ensue. drs practice is now having to appeal to the gyn to see me again but gyn is currently refusing as my ultrasound was normal. yeah, my hooha burns, i keep bleeding, the pain in my tummy is terrible and i just feel like crap, but totally normal because an ultrasound says so. Mad

anyone have any ideas/suggestions or know of any good gps in the north east of england? its so bad, i think i'm secretly dying and no one will tell me. i'm taking so many painkillers its not funny and they are only taking the edge of the pain off. and i'm sick of running out of sanitary things, i can't use internal methods because they are so painful but pads make my poor hooha scream. i haven't been able to do pelvic floor excercises since december because it hurts so badly, so now i leak wee every time i sneeze or cough. i can't keep living like this.

sorry for the long rant. i'm 22 years old, a virgin and i want my life back.

angelfangs

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Join date : 2012-09-25
Age : 27
Location : uk

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Re: vulvodynia and pcos

Post  Ceriane on Sun Oct 28, 2012 12:44 pm

You poor girl!!! What you've been through is awful, and really quite traumatic.....There's not a lot of advice I can offer as my problems sound different from yours....I just have vulvodynia which for me I think is secondary to a condition I have called pernicious anaemia which was untreated for a long time, and I think because of the damage to my nervous system, minor infections like thrush triggered a pain condition....I'm hoping I won't always have it, or that I can learn to manage it and it won't always be as bad as it is now....

Not sure if you've had an ultrasound or a laparoscopy, but in your case, it seems that they need to be looking into things like endometriosis, and then helping you to be able to manage your condition, at the moment your up in the air as you don't have a diagnosis.

I'm incredibly shocked by the way you've been treated by gynaecologists and medical professionals, these things need to be handled with care and sensitively.....everyone deserves to be treated well in hospital or in clinics etc....it's absolutely shocking, and I don't understand why they would be like that as they are paid to help!!! It's not the first time I've heard of it either....

To be honest, I've been to loads of people about my condition and they've all been really lovely towards me, touch wood I've never had a bad experience with a medical professional regarding this yet, I think I'd be traumatised if I had. However I'm just self treating for now, and managing myself, I'm pretty sure what's wrong with me now, and what I'm dealing with, so the rest is going to be self care, management. The only thing is with vulvodynia there are no easy solutions, so I have a list of what I'm going to try and I'm working my way through it. I'm not going to let it put me off having a relationship if I meet someone I really like (cos I did for such a long time) because I know I can work around it and manage it, and if a guy isn't understanding...I don't think I'd want to be with someone like that anyway, whether I had this condition or not!!!

Ceriane

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Re: vulvodynia and pcos

Post  Loulou on Tue Oct 30, 2012 11:22 pm

Hi angelfangs

I feel for you. You do seem to have been very unlucky to have come across so many unsympathetic GPs and consultants. Would the hospitals in Sunderland be another option or the Wansbeck? - might mean further travel but would be worth it if the staff there are more sensitive and helpful. (unfortunatley i've only used the Physio dept at Wansbeck so can't comment on their or Sunderland's gyno dept/staff. The physio i had at Wansbeck - Jane Thompson - could certainly help you with your pelvic floor) Alternatively have you tried your local GUM clinic - that's another option for getting some advice and suitable referrals (you can make an appointment without having to go through your GP)

One important thing, it seems like you have some very specific definable issues (pcos, problem periods, hymen and, i agree with ceriane, endometriosis might also be a factor?) so its not surprising that you are having vulval problems and pain. My understanding of vvd is that it is 'unexplained' vulval pain and it seems to me that a lot of your pain CAN be explained and therefore treated (so this should be a good thing if you see what i mean). If you can get your specific issues treated your vvd pain may go away if they are the root cause. Don't let them fob you off because your ultrasound was normal - so was mine but i still had problems.

Couple of practical things - from personal experience i would recommend you steer well clear of canesten cream if you do not have a thrush infection. I think it was canesten cream and suppositories that made my vvd worse - stop using these and you may find your vulval pain decreases to some degree.

Also, i would recommend using organic cotton sanitary pads if you aren't already - they're called Natracare. You can get them in Oxfam shops, Waitrose or on-line. These will help to minimise irritation as they don't have chemicals in. I read somewhere that Boots also do a similar own-brand version but i haven't tried those.

Hope you find that sympathetic doctor that can start you on your path of getting better.
x

Loulou

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