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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

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Sun Aug 13, 2017 4:27 am by Hopeitworks

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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
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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.

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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 …

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update - will I ever get to see a dr? grrrrrrrrrr

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update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Sun Jul 04, 2010 7:22 pm


Hi Girls

I've decided the quickest option for me would to train for a medical degree, get my dr'licence, prescription pad and start treating myself! Mad

Well I was suppossed to be refered to a vulval clinic and my gynea said he was gonna have a look around to see if another hospital could treat me. He said I would get seen within 6 weeks, its been over 2 months now.

Mum spoke to his secretary and apparently he has just referred me to another gynea in the same hospital. I am not really happy with this but i will go all the same

In the meantime mum (God love her) got me the number of a PAL's nhs worker for barking and dagenham who looked up my condition. She emailed a couple of consultant secretarys for st Barts hosp and she has given me the name of a consultant who treats Vulval problems

Well I now have to go to gp to insist I get a referal. So im going to see the gynea at Queens the Vulval lady at whitechappel (where the clap clinic is! ha ha) and the pain clinic in King Georges....surely someone will be able to help me!!! ugh!!

Sebby
xxx
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sarah001 on Mon Jul 05, 2010 12:52 pm

Hi Sebby,
"Clap clinics" are so much more than just places to get checked for STIs these days, it was a GU consultant who referred me to a vulvar dermatologist (happening in August) and if I'd gone to my GP I would have ended up at normal dermatology so it might be worth paying one a visit, a consultant can refer you to a particular consultant rather than just to a department in general where you may get to see someone who knows nothing about your particular condition. GU clinics know lots about vulvar problems and vulvar clinics etc and also can give you medication on the spot to treat the pain and advice about other angles. I came away with the offer of Amitriptyline, a leaflet all about vulvodynia and having been told about the pelvic floor retraining angle after my first visit to a GU clinic. It's worth a try if you don't get to see someone you need to see.

If I get nowhere with the dermatology angle the GU consultant has said she will refer me to a vulvar clinic. It's an out of date misconception that they only deal with STIs, even my GP is badly informed on that one and asked if I was worried about STIs when I mentioned I'd been to a GU clinic but as I pointed out to her I went because it's their specialist area of the body I'm having problems with.
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Mon Jul 05, 2010 8:07 pm


Thanks Sarah, I really didnt know GUM clinic's could deal with this stuff. Its good to know that they can give me something for the pain as I had a really bad day with the pain and only had co-codermol to take which does nothing.

I saw my GP today and she is going to refer me to the consultant that the PCT women recommened.

I still came out crying and angry. Apparently the Practise Manager had told my GP that I had made a complaint to the PCT and said that the GP's were unhelpul and basically rubbish!

I had said no such thing and neither had my mum! I have emailed the PCT lady to tell her what the Practise Manager had said to see what she says.

I had a copy of the email the PCT lady had sent me and in no point did it say I had made a complaint and slagged off the GP's

Im so angry as it made my visit to my dr, (which is difficult enuff when u have to keep going back)very stressful

Grrrrrrrrr
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sarah001 on Tue Jul 06, 2010 11:59 am

That's kind of what they did to my partner when my partner dared to point out the system of appointments at our practice wasn't working, then they turned it around and accused him of being rude to a Receptionist which he wasn't because I heard the entire phone call. Don't forget you can complain about the Practice Manager and the lies that have been told. Don't let them walk all over you.

As for the GU clinic, if you wanted to go down that route it's best to phone and ask which consultant would be the best one to see and make an appointment. The great thing about GU clinics is we have access to consultants without a referral which obviously saves alot of time and hassle at the GPs and the GU clinic can refer you to a vulvar dermatologist, a vulvar clinic, a womens health physio etc

Try not to let the pettiness of the Practice Manager get you down and don't let her get away with it, these people shouldn't be allowed to lie and abuse their positions to make people who need help afraid to come and ask for it.
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  jules on Thu Jul 08, 2010 3:59 am

you two are fun to listen to. what is a GA? why do you have to wait so long to get into places? of course, i did have to wait at least two months to get in with a gynecologist who specializes in treating Vulvodynia...she was worthless. if we complain here (America)...the clinics bend over backward to meet our needs. the customer is always right in the U.S. I am going to complain to my male practitioner at the pain clinic because the physical therapy center never received a referral from the clinic staff. hello, it's been at least a month. it is a learning lesson. we go through enough w/ the pain, disappointments, frustrations etc. i think i cry more often because of these damn doctors than i do about the pain...ok..i guess i cry about the pain too. i was so bad yesterday that on top of my prescribed Vicodin..i took an OXYcodone that a relative gave me. (don't tell my doc) the heat that was generating from my vulva probably could have set the couch on fire. i'm surprised it didn't. much better today...but..damnit, it is still there. as Sebby says.. This is "fecking" ridiculous. she also says i "fink" so...very clever ms. sebby. ok..ladies after another night of drinking my sorrows in a few glasses of Baileys Irish Cream, i am heading to bed. you ladies are already sound asleep. take care...good luck to you! oh and about sexually transmitted diseases, we call them STD's. not STI's (?) is that illnesses.

j

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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sarah001 on Thu Jul 08, 2010 12:52 pm

Hi Julie, it must sound like gobbledy gook to you!! A GP is a General Practitioner, they are our general doctors and in order to get to see consultants you have to persuade one to refer you which they can be pretty reluctant to do because each referral costs their practice money so if they can avoid sending you to see someone else they will. I find getting an appointment with my GP can be difficult as she is fully booked right from 5 minutes after opening for the day and to pre-book an appointment means you have to wait about a month.

It's only in recent years we've changed from calling STDs to STIs and it stands for Sexually Transmitted Infections, I don't know why they've changed it they just have!

As for everything taking so long, it's like Sebby said a couple of appointments with consultants on the NHS can take a year to get through so trying things out can take forever here in the UK. My referral for a Vulvar Dermatologist was requested about 3 and a half months before the actual appointment because you have to wait your turn, there aren't many instances where you get fast tracked for being urgent. Then there's the months of trying to persuade a GP to refer you in the first place so although it's free it's also very, very slow. Not many people in the UK can afford private medical care as they make it so expensive but if we had private cover we could get in to see people in a couple of weeks rather than waiting months. Unfortunately private cover sends us to the same doctors who work on the NHS too which of course means the more private patients these doctors squeeze in quickly the slower the NHS gets.

As for complaining, unless they've killed someone close to you complaining about the mighty NHS usually doesn't help. One of my friend's Dad had to have an op to remove an abcess and the surgeon cut away a huge chunk of skin and declared there was no abcess there. When a nurse checked it she realised the surgeon had cut flesh from the wrong side of the body which is why he found nothing and the abcess was still there untouched. She took photos of this for the guy but then said she daren't back him up in court or she'd lose her job. When he approached a solicitor (lawyer) about it he was told unless the NHS kill you it won't do any good to complain so he just had to go back on the waiting list for several months to get the original surgery repeated on the right area. However I personally have complained about an NHS dental practice and surprisingly they took it seriously and immediately registered me with another so it works to complain about Dentists! I think if you stay calm and complain high enough up the ladder it sometimes works.

The healthcare in the UK is in a bit of a mess these days because there aren't enough appointments to go round, nurses are frequently made redundant even though the hospitals don't have enough staff and patients are having to travel further and further away for certain conditions because of this and other political reasons. The NHS sounds fantastic on paper but as a working model it doesn't work too well!
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Thu Jul 08, 2010 9:45 pm


Feck it! I fink im gonna move to the US! lol!
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  naomi on Fri Jul 09, 2010 5:16 pm

book me a flight too whilst ur at it pleaassssssssssssssseee Sad
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Fri Jul 09, 2010 8:46 pm


Sod it! why not....our NHS is so crappy and we can pay for the treatment by becoming some kind of Vegas act...not sure what we will do but we got time to fink about that lol

xxxxx
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Re: update - will I ever get to see a dr? grrrrrrrrrr

Post  Sebby (Admin) on Sat Jul 10, 2010 9:04 pm


Dr's are still thick!

Asked for the referral to St Barts, get call from GP saying that my Gynea has already reffered me...I say his secretary told me he had only refered me to another dr in Queens..GP said no wait for letter for St Barts vulval clinic

I got a letter...for King Georges...WTF!!!!

Gotta phone round again to actually find out where im being refered too and to ask again for st Barts

grrrrrrrrr

Again i should just go to medical school myself Mad
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