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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 …

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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 …

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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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Birth Control?

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Birth Control?

Post  itchyandscratchy on Fri Jun 17, 2011 1:49 pm

My vulvodynia seems to follow a predictable cycle along with my hormonal cycle, so that it gets worse about the week before my period and stays pretty bad during. I know there quite a few posts on here discussing whether hormonal contraception can make vulvodynia worse or even trigger it, but what I've been wondering is if contraception which prevents periods or lightens them could actually improve things (not least because it would mean less time wearing pads, which definitely don't help). Probably a bit of a crazy idea, but I do wonder as I've never been on any kind of hormonal birth control.

Has anyone had an experience of birth control helping the condition?
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Re: Birth Control?

Post  hopeful on Fri Jun 17, 2011 2:26 pm

Hi
I am on a contraceptive that basically stops my periods. I didn't have vulvodynia before I went on the pill so can't say what my pain would be like if I wasn't on it but my pain has been really bad whilst on the pill so I would guess that it isn't doing anything to reduce it. Everyone is different so I'd say it's worth trying just in case it does help you.

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Re: Birth Control?

Post  jules on Sat Jun 18, 2011 3:02 am

Hormones definitely plays a part in the pain prior to the period. My pain always increases significantly about a week prior to my period and about two days into may period. I have never been on birth control pills or any IUD's.

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Re: Birth Control?

Post  Sarah001 on Sat Jun 18, 2011 1:08 pm

Oddly I find my pain isn't so bad just before and for the first days of my period, I think this might be because my brain is occupied with my horrendous back pain I get at that time due to increased ligament laxity though.
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Re: Birth Control?

Post  Sebby (Admin) on Mon Jun 20, 2011 6:17 pm


I do find I get much more burning and soreness before my period and in the last few days of it.

I was first put on Cerezette by the gynea (mini pill to stop periods) trouble is I bled for 3 months on and off! When my periods finally did stop I felt dry and the soreness didnt go away

I then tried normal combined pill but it didnt help my pain

I got off contraception and let my periods return to normal. I am quite nervous now about hormonal contraception :/

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Re: Birth Control?

Post  itchyandscratchy on Mon Jun 20, 2011 7:04 pm

jules wrote:Hormones definitely plays a part in the pain prior to the period. My pain always increases significantly about a week prior to my period and about two days into may period. I have never been on birth control pills or any IUD's.

Wow! You're like my vulvodynia twin! =P lol

Sebby wrote:I am quite nervous now about hormonal contraception :/

Well that's understandable, pretty much how I feel about it.
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Re: Birth Control?

Post  Aussie on Tue Jun 21, 2011 2:05 am

I have read too much about obc causing v, I am coming off it as of tomorrow. I will probs bleed for like 3 months because I have missed a pill before and bled for a month. Hopefully I will be better off for it though. Can't wait to get this crap out of my body.

drug free apart from oxytrol patch Smile - no increase in pain since coming off drugs.

Do you research before stopping your periods, they are natural. I made a huge mistake going on the pill.

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Re: Birth Control?

Post  Vulvosaurus on Mon Jun 27, 2011 11:28 am

Hi all,

I'm new here. Nice to meet you all!

I've been taking the mini pill for around twelve months and have not had a period for ... around twelve months. My Vulvodynia began about nine months ago. It took me about 4 months to get a diagnosis, which I know is pretty quick compared to some.
Maybe you guys have already seen this, but I'll link to it anyway ...

http://www.youtube.com/watch?v=ziq9Fox8IVQ

Very interesting. I have made the decision to stop taking my contraceptive pill. I googled Dr Goldstein and it appears that he is very well qualified and experienced. I for one certainly fit his description of an 'early user'. I have been on hormonal birth control pills since I was 13 years old, which is virtually ALL of my reproductive life ... I'm now 35. It's worth a try. Maybe I'll get lucky!

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Hello and welcome!

Post  Aussie on Tue Jun 28, 2011 12:46 am

Hi Vulvosaurus!

Love the name.

Firstly welcome to the forum and congratulations on coming of obc. My specialist I am seeing at the moment completely agrees with dr Goldstein about the pill theory, she was the final push to get me off it, and even if it doesn’t get rid of the pain, after reading what it actually does to your body I don't want it anyway.

I have been off for 6 days and the bleeding has stopped Smile no change in pain yet but apparently it can take up to a year. I am unsure of what Goldstein says about hormone replacement to get the levels to where they should be after coming off it. I am hoping my body will fix its hormones itself. My sex drive unfortunately has shot through the roof, it's not so fun Sad

Where did your v come from, was there a specific trigger (yeast, uti etc)?

I have recently come off all medication (lyrica, ami, pill) and there has been no increse in pain! Smile trying something hollistic for once in my life, I am no longer a zombie from the drugs.

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Re: Birth Control?

Post  Vulvosaurus on Tue Jun 28, 2011 6:14 am

Hey Aus,

I've been off the obc pills for 5 days now and so far I've had no change in pain either. Man ... I hope it doesn't take a whole year, but even if it did, I suppose it would be worth the wait. I was hoping my hormone levels would right themselves without any help too. I must say, I'm not exactly excited to see how my first period in over a year is going to go! I'm Kinda dreading it actually.

I don't really know what caused my Vulvodynia. I seem to have a number of 'risk factors'. I certainly do have a history of frequent thrush infections, but I also have a herniated disc in my lower back, which I hear can lead to these problems. I also have a history of severe Endometriosis which I had surgery for a couple of years ago ... there appears to be a link between Endo and Vulvodynia too. Some of the information I've read suggests a possible link between gynaecological surgery and Vulvodynia.
I've also (embarrassingly) had an anal fissure in the past for which I used a Nitroglycerin based vasodialator ointment that may have been responsible for sensitising the area. In the end, the anal fissure required surgery to correct, which may also have contributed to the problem. And finally I was recently trialed on a drug called Sinemet (Levo Dopa) for a neurological condition that I have had for several years. My problem was thought to be a benign condition called Essential Tremor, but when the Levo Dopa proved effective for my tremor symptoms the doctors changed their minds about my diagnosis. They now think it is either Early Onset Parkinsons Disease (I hope not!) or something called Dopa Responsive Dystonia (wouldn't be so bad). Anyway ... Dopamine levels in the brain can have an effet on sexual health but it remains to be seen if taking oral dopamine will help with the Vulvodynia ... So who knows?

It's great that you've managed to get off all the meds. Is it me, or do most people seem to find the traditionally prescribed Vulvodynia meds ineffective? It certainly seems that way from the reading I've done!

Smile

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Re: Birth Control?

Post  Sarah001 on Tue Jun 28, 2011 12:52 pm

Anal fissures are often connected to pelvic floor spasm, the spasm stops the anus from relaxing and stools can cause tears when there's no relaxation during a bowel movement. I also have tremors which initially I was told was Essential Tremors but turns out mine is related to my Hypermobility Syndrome and my muscles are already overworked spasming and trying to support my joints where my ligaments have failed so when I need them to do something normal like move my arm or leg they tremble like I've just done a huge workout because they're always too exhausted to do anything which made perfect sense once I got to a Rheumatologist and he explained it to me! I had to go through a physio thinking I had MS, another looking at Parkinsons and another looking at Brain Tumours as a possible cause before this easy explanation arrived though. Rolling Eyes
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Re: Birth Control?

Post  Aussie on Fri Jul 01, 2011 2:52 am

Hi,

Sarah is right about the anal fissure. I have had this too after vulvodynia set in and used Nitroglycerin which cleared it up. Just have to be careful, going to the toilet almost always hurts me. You are like my twin! I had thrush and utis all the time prior to this.

Sarah: I found out from Alyssa Tait I have hyper mobile joints too. Although it doesnt cause tremors. It seems to be people that get this pain have several contributing factors.

It was expected I had endo too but they just put me on the pill to sort out my painful periods. (stupid docs)

Did you have the neurological symptoms prior to v? I started getting burning hands and feet a few months in, which they suggested first was anxiety due to my condition, then screening for ms then 'neuropathy' again, stupid doctors. I was on Endep for the burning hands and feet, then lyrica and endep together, which made my IC flare like crazy. I have had way way less bladder and clitoral pain since being off lyrica.

I didn't really 'manage' to get off meds. They were not doing anything for pain other than the burning hands and feet anyway. It took a nasty drug reaction for me to realize I don't want this stuff in my body. At first my hands and feet burned like hell for the first 4 days after stopping cold turkey, now they have settled down and it is annoying but not there constantly. Thank god my vulva pain has not increased since coming off everything.

9 days off the pill, no change to pain. I tried the prescribed magnesium and spip from my naturopath (2 pills every 10 mins for 2 hours prior to sex pain in the ass!) and it worked! I mean I still had slight pain at the entrance during but NO burning afterwards (yay) will keep trying it over the next few times and report back.

"Yes" water based lube and skyn by ansell condoms worked fine. No irritation. Smile

Hope you are doing well today.

Claire xx

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Re: Birth Control?

Post  A2015 on Thu Aug 13, 2015 2:47 pm

I wanted to post about my story to reiterate that there are DEFINITELY cases where VVS is caused by hormonal contraceptives, even when not immediately obvious.
I want to desperately encourage anyone who has VVS to come off hormonal contraceptives if possible.

In 2012, I had unprotected sex and took the morning after pill. I developed vestibule redness/soreness/itchiness. The clinic confirmed a Yeast & BV infection, explaining that this was common after sex (though I had never had any vaginal problems for years before). They also put me on the Pill (Microgynon 30). The infections cleared (tested negative) but my symptoms remained constant.

My symptoms extended beyond vestibule pain. I also had itchiness, redness & subtle inflammation of the whole vestibule (localised to this area), my vestibule skin started to tear during sex, get more inflammed & very regularly develop new infections (Yeast/Bacterial). I also had a lot of discomfort/itchiness in & around my anus.

Firstly, this made me question whether I had VVS because I didn't just have pain of the vestibule, as I kept getting infections too (now I understand that women with VVS are often simply more prone to infections & discomfort of the whole area).
Secondly, I assumed my VVS must have been caused by the infections (proliferation of nerves in the vestibule after infection), because the symptoms I had felt like they were permanent, that the skin itself was not normal anymore & seemed irreparable.

I didn't come off the Pill until mid 2013, when I had read more info about a link. I felt I should just come off it in case it might have been making anything worse.

The reality was (by my complete surprise and total elation) that within a month, my vestibule returned to completely normal and ALL other related symptoms also disappeared — the anal discomfort/itchiness & bring prone to developing infections.

I hadn't thought the Pill could be causing my VVS, because I had developed the infections before I started the Pill (I didn't consider at the time that just before I got the infections, I had taken the morning after pill which is a huge dose of progesterone). I also had no understanding of hormones & no idea how they could cause pain in a specific area of the body like this! Every doctor I asked said there was no way the Pill was relevant, which made me have little hope.

I believe there are 2 main causes for VVS — hormonal or a response to an infection. But there can be an overlap, and I didn't consider the Pill could be the cause because I kept getting the infections. But I was mistaken (and so were over 10 doctors & specialists).

I really hope this can help any women suffering.

As a side point, unfortunately, after being perfectly normal for 18 months, this year I developed infections (no hormones involved) and VVS has fully returned. I feel that my body has learned how it responded to infections when I was on the Pill, and now the nerves are irritated again = VVS Sad

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Re: Birth Control?

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