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» 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

» 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). …

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


Stop taking your birth control!

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Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 3:21 am

I am 22 years old and had been suffering with vulvodynia for over a year. I had been on birth control since 16 years old and had no issues with it...or so I thought. After a year of pain and discomfort (constant burning, stinging, fissures) and after countless trips to 7+ doctors and specialists, I myself found the cure to my own vulvodynia. I decided I was going to go as "natural" as positive in hopes to making myself more healthy. Therefore, I stopped taking all medicine, but Loestrin 24 was the only medicine I had been taking daily. In a month's time, my pain has finally gone away. I consider myself very blessed and am so thankful to have cured my vulvodynia. Doctors were telling me that it was something I was just going to have to live with but I just couldn't accept that answer so I kept searching for a cure. I think it takes a few weeks for the hormone levels to reduce and for your vaginal area to reduce in irritation and inflammation, so be patient, give it a month's time, and let your body heal. I will never go back on hormonal birth control ever again. The year with vulvodynia greatly affected the person I am, both emotionally and physically. I will pray for everyone reading this that they will find their cure.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 3:22 am

Also, I would like say I have been pain free for 4 months now

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Re: Stop taking your birth control!

Post  Neevi on Mon Nov 11, 2013 9:31 am

I have a gynaecologist appointment for weds morning to get overall diagnoses but i have thought about coming off the pill to see if that helps at all.
Happy to hear it worked for you, helps me keep positive about curing it!
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 10:54 am

Please dont tell people to stop taking meds. I absolutely have to be on bcps for endo and it didnt cause my pain. Remember everyone is different but until you go to med school you shouldn't be giving that advice. I'm glad you're pain free but that would cause a whole different level of hell for me. You're lucky that you had such an easy way of getting cured. Also remember different bcps do different things. I had one that gave me constant yeast infections so I switched. But please keep in mind you have no idea why someone might be on the pill its not always for sex. I have terrible periods and pain. If im not on the pill forget living I'll be in bed for 2 weeks of every month. Vulvodynia doesn't seems terrible then. At least for me. And there are other alternatives too I had surgery and I'm good to go. But like I said I'm happy you're cured but keep in mind sometimes you cant simply go off meds that easily.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 12:13 pm

Alana3-
I was on birth control for endo as well. I would rather have 3 weeks free of pain per month than pain everyday. But that's just my opinion. I think you missed the point of my post-- this forum is a place to share your story so that is what I have done. Also it wasn't an easy cure. I cried every day for 14 months because I was miserable and was having no luck with other treatments. I shared my story in hopes to possibly help another woman reading this forum; that they would talk to their doctor about the possibility of birth control being the cause and consider going off of it.

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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 12:20 pm

I just dont like hearing oh hey I got off bcps and you should too was my point. Like I said glad it worked for.you. and that its way broader than no more hormones. If you have endo how do you deal now? Most girls with endo cant ditch bc and be good, but again if you can great.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 12:34 pm

Alana3-
For me, it was as simple as the hormones I was putting in my body were hurting me. I just wanted to share my personal story, find support, and support others. Best of luck to you.

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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 1:01 pm

Ok but that doesnt answer how you're managing your endo now. Did you get surgery? Im all for getting off the pill esp if theres a way to manage endo.

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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 4:21 pm

it makes sense they don't work for everyone, I was on yasmin for only 3 mo. last year and one day I just woke up with sowllen vestibular glands!!!! My vulva was swollen as well, the glands l=felt like bulging veins, luckily then they dissapeared after taking naproxen !
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 4:38 pm

And you're sure that's from bcps? Naproxen is an anti inflamatory so that makes sense it would go away. Also remember that different pills work for different people so the one that works for me may not be right for you. And vice versa. I'm just not a fan of hearing oh get off your pill and you'll feel better because it's not true for everyone. That was my point. Nothing more.

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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 5:01 pm

yes, I'm sure it was from the birth control. It was my first time ever taking them and I did not do anything else to cause such bizarre symptoms.
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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 5:02 pm

I was on them for 3 months only. I was fine after I stopped taking them
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 5:16 pm

Yeah any medicine can cause weird stuff thats why theres so many I'm allergic to tylenol thats why I take advil

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Re: Stop taking your birth control!

Post  Fingerscrossed on Tue Nov 12, 2013 10:31 pm

I've been on birth control (in various forms) since I was 18 and I'm about to turn 24. I asked my doctor, a pelvic pain specialist in Louisville, KY, about stopping birth control and he disagrees with the idea of stopping. In his mind, the pills help you to not have pain because they control your cycle. I'm actually on continuous birth control now and don't think it's made things worse. I have been scheduled for a vestibulectomy on Dec 17. If that doesn't work, I'll probably try getting off all my pills. I think my nerves are the issue, though I cannot compare sex on pills vs. off them. I've been on birth control for as long as I've been sexually active.

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Re: Stop taking your birth control!

Post  Alana3 on Tue Nov 12, 2013 10:56 pm

I lived in lex for four years if its nerves the vestibulectomy will help

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Re: Stop taking your birth control!

Post  A2015 on Wed Jun 03, 2015 8:52 am

@anon99, your experience is almost identical to what I experienced in 2012.
Was on the Pill (Microgynon), suffered for over a year with Vestibulitis, countless trips to doctors none of whom suggested coming off the Pill. In desperation, I did, and within a month, all my symptoms had gone away completely.

However, in 2015 (having not been on hormonal birth control since, as I also swore I would never go on it ever again), I got a Yeast & BV infection and it has triggered Vestibulitis just as it was before.

I just wanted to comment to advise being gentle with your body, as I thought I would never have any problems again (I was so completely cured) and thought I was resilient to infections/VVS returning. I never had to question why coming off the Pill worked, as I assumed it was hormonal, but this time, it doesn't appear to be. Be well.

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Re: Stop taking your birth control!

Post  sailor_moon on Fri Jun 05, 2015 1:15 am

All my problems started when I came OFF birth control...and when I went back on it to see if it would fix me it didn't. I think the pill has screwed up my hormones to the extreme that 2 years later I still only get a period once every 3 months.
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Re: Stop taking your birth control!

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