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» Vestibulectomy
Yesterday at 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 …

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


Recently diagnosed and the tips I was given..

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Recently diagnosed and the tips I was given..

Post  Newbieadelaide on Fri Sep 14, 2012 11:56 am

Hey guys

So I usually never post on forums but I am doing so in hopes that the advice I got will help you too...

I have had a rough few months. I was diagnosed with endometriosis within seconds of my
Gyno reviewing me. It was quite a shock...within 48 hours I was having surgery!

After my laparoscopy I thought everything was ok...until I got hit with a strep b infection! Then I got thrush from the antibiotics and then got strep b again. My doc says that my body has been traumatised so everything was out of whack. After a heap of antibiotics and thrush treatments the infection went away but I still had pain, irritation and sensitivity around my vulvar. Naturally my doc thought maybe it was STD related but all the tests came back nagative which included swabs and blood tests.

After 3 months of constant pain and irritation my wonderful doc was able to get me an appointment with a dermatologist in adelaide who specializes in vulvar disorders.

Within seconds of the dermatologist reviewing me she diagnosed me with vulvadynia. Her tips were as follows:

- massage vaseline at least twice a day into the vulvar where the pain is. If possible you could do it a few times a day. The more the better!
-increased my endep to 25mls each night - I was only 10mls to relief pain from endometriosis. Endep is the original antidepressant that it used more for pain relief these days. Beware though it does leave you drowsy the next day. In order for it to be effective as antidepressant you would need to take around 100-125ml a day.
- don't overly wash the vagina as it naturally cleans itself. I think I was overly cleaning it which was irritating the skin
- try to reduce stress as this could be contributing to your pain
- consider pelvic floor physio

In addition to her advice my doc said

- cotton underwear only. Now this is hard to find because even bonds don't make pure cotton but it's pretty close
- discontinue using soap for your vagina including femfresh. Use the sorbolene cream that has at least 10% glycerin
- do not wear pads unless you have your period as this can cause dermatitis
- use the sensitive washing powder - its quite expensive but this is important as you don't want to be washing chemicals on your underwear which is then touching your vagina
- use unbleached toilet paper which is free of chemicals
- avoid tight clothing including tights. I bought the tight things that go up to the top of your leg

The dermatologist's advice of using the Vaseline and massaging this into the vulvar was quite shocking and I looked at her with a 'huh' kind of look! However, I have been doing this for 5 days and my pain has decreased. Still not heeled but certainly has helped. I guess it's like when you have a knot in your back and you get a massage to get rid of it...guess its kind of the same thing really it's about massaging your nerve endings. In the beginning it hurts but it does get easier. Be gentle though dont push yourself. The dermatologist has asked to see me again in 3 months but she is hopeful the above techniques will help me greatly.

Fingers crossed and I hope I'm not jinxing myself but I just hope that this info could help other people, even one person would be great because I know how debilitating it can be.

Take care guys Smile

Newbieadelaide

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Re: Recently diagnosed and the tips I was given..

Post  Char29 on Wed Oct 10, 2012 8:16 am

Hi - thank you so much for your advice.
I have had V for almost 40 years now and by trial and error I just wanted to share:
There are two things I think you should be careful of.
The Endep may work initially, but it stops working after a while. It makes you put on weight and also makes you stop feeling anything. When I was on it, I could hear a really funny joke and would not crack a smile. Not a good way to live. And it did nothing to soothe my V.
And also putting vaseline/petroleum jelly on the area may feel good initially, but it is not a natural product and will make things worse long term. From trial and error, coconut oil (organic) or even olive oil are much better. For soothing and as a lubricant.
Diet plays a huge part in all of this as well - at the moment I am in the process of changing everything in my diet.
Gluten free, Dairy free, sugar free and low alkaline.
Good luck on your journey.
Hugs,
Charmaine xxx


Char29

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Re: Recently diagnosed and the tips I was given..

Post  Alana3 on Thu Oct 11, 2012 2:42 pm

Also, to add. I was freaked out to gain weight or have any more awful side effects from oral pills (antidepressants, pain killers, etc). I told my doctor my fear of this (I am a zumba instructor and work out 4-5 days a week plus horseback ride) I can't be gaining weight, especially after I work so hard to keep it off Smile Plus I'm used to V why would I want to complicate it with anything worse or more ugh!

He mentioned that if you use a topical it absorbs thru the skin wall and not thru your liver which is where all the crazy side effects happen. I have been on a gabapentin, ami (whatever that antidepressant is) and lidocaine compound for a week now and have zero symptoms from the meds and it's helped. Ask for a topical compound, it's so much better! Be careful with the pills it can make things so much worse, and pain killers work for a bit and than your body adjusts. At least that's what I have found :/

Alana3

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