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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» 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 …

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


My story - scared 21 year old

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My story - scared 21 year old

Post  rosina on Fri Dec 07, 2012 3:44 pm

Hello!

I am 21 and have been diagnosed with vulvodynia/Vestibulodynia. Quite frankly it has ruined my life! I only have this pain when it is provoked, i.e through wearing tampons or through having sex. Needless to say the relationship with my long term boyfriend has greatly suffered!!

I've been suffering from this for over a year and a half and I can't tell you the frustration I've felt seeing numerous doctors/gyneacologists who tell me it is in my head when it very clearly isn't as I am sure a lot of you will relate to.

I got so fed up with everything (test after test and numerous thrush cures) that although we couldn't afford it in the slightest I went to see a private gynecologist - one of the best in London and he gave me Botox injections. (£500+) but at this stage I was willing to pay anything and do anything to get rid of this problem. I had 7 injections, 5 on the outside and 2 on the inside. It did cure the pain on the outside but the inside pain remains. I did not go for another treatment as quite honestly I personally found the treatment quite horrific.

I decided to go to a different gynecologist and she told me to use the dreaded dilators for 6 months... which I did religiously but with no difference in the slightest.

I now am seeing a new doctor who has prescribed me Nortriptyline but apparently if that doesnt work there are other ones to try. Has anyone tried using these treatments??

I'm not giving up hope! although some days it is very hard!!

I have a fantastic relationship with an amazing man who understands but I feel there is only so much time he will put up with it for - regardless of what he says. Each day is taken up constantly thinking about it and wondering if each new treatment will work and when it doesn't I worry about how to break the news to my other half.

This thing is taking over my life!! Sad I'm so unbelievably scared that it won't ever go away. has anyone else had a similar experience??

Rx


rosina

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Re: My story - scared 21 year old

Post  cba321 on Sat Dec 08, 2012 12:44 am

Hi Rosina

Yes I have been told that it was all in my head....by idiots who call themselves doctors, from reading this forum most if not all of us have been told that at some point. However I now have seen doctors and health professionals who don't believe it is all in my head.

Did you start doing dialators as soon as you got the botox injections?? botox alone won't help the problem at all, it is just a temporary paralyzing of the muscles for about 6 months giving you time to stretch out the muscles before the botox wears off. I had the botox injections but have had very strict Physio since 5 days post the injections. The physio I have seen has done randomized control trials on the botox injections with Physio post the injections so is very experienced. I am only 3 months in, so I have another 3 months of botox, so it remains to be seen if the physio will work to stretch the muscles out and stop the spasms.

Maybe potentially starting with a physio who specialises in pelvic floor conditions and pain may help. I have also just started seeing a psychologist (one who specialises in sex and pain) and I am finding that very helpful. I am not in a relationship and have been petrified for years to start one up again but the psychologist is helping me to not place so much emphasis on the vagina - there is lots of other great things that you can do all with the same outcome as vaginal sex! Even though I already knew that fact, I don't think I really absorbed the implications until now...and how by eliminating the pressure for vaginal sex, the pressure I feel, the insecurity I feel, the depression diminishes also = a healthy potential for a relationship - I know it isn't the greatest plan but is a plan nonetheless and is one way to not let your vagina take over your life. Additionally I am doing quite a lot of therapy to decrease the actual pain.

It is a very scary experience, but an experience I think that gives you a very interesting outlook on relationships and human behaviour. It is a very maturing experience not just a scary one

cba321

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Re: My story - scared 21 year old

Post  lauramw on Sat Dec 08, 2012 1:54 pm

rosina

I've also had shitty doctors/people who have made me feel like a total freak and haven't respected that what i am going through is serious. i have never had botox injections, that sounds somewhat traumatising, i have tried the most natural approach possible being physio therapy, pelvic floor work including dilators (which honestly sucks so bad sometimes but i think does help - try making it a sexual process, not a clinical one) and seeing a psychologist who helps me get perspective and not making my vulvodynia the centre of my entire universe.

I've found that there are good people out there and men are more understanding than you might expect. i think if they aren't understanding, why would you want them around anyway? love goes far beyond sexual acts. i think the most important factor of this whole awful illness is your emotional reaction to it. my vulvodynia is so so responsive to my stress and anxiety, you have to be good to yourself and then your body will follow.
it terms of other medical treatments - i was on endep 50mg for 3 years but loathed the drowsy side effects so now i am not on any medication which is scary but better than putting chemicals into your body. i have heard they are clinically trialling endep as a topical ointment, not as a pill, so your body is not effected and you can use a much higher dose just on the localised area. this is very exciting, keep your eyes peeled.
i think there is hope - in my 3 1/2 years of suffering, about half that time i have been progressively experiencing low pain/pain free sex. i am in a bad period now but i have to be strong.
good luck xx

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Re: My story - scared 21 year old

Post  Karen818 on Sun Dec 09, 2012 11:07 pm

I am in the same shoes as you, intimacy has become so depressing for me,every time my boyfriend wants to get a little intimate with me I start to get very stressed out and all I can think is how bad is the pain gonna be this time, there are times where I just let him do it because I feel bad but I cry silently from the pain.... It's awful and I have no one to talk to because none of my friends even know what this is, and I can't afford any doctors as I am a poor student, and don't have health insurance, I would talk to my mother but she doesn't know Im sexually active and I don't have that closeness with her to tell her :/ I'm miserable, so you are not alone I always feel that my boyfriend will eventually get sick of it and leave me as well :,( let's just hope this illness will go away or that the cure will come out in our lifetime!

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Re: My story - scared 21 year old

Post  mary jane on Sat Oct 05, 2013 6:46 pm

Can you update us on your progress?
I'm in London as well, just got a referral to a specialist at the vulval disease clinic.
all the best
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Re: My story - scared 21 year old

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