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» Recently Diagnosed.... Help!
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» 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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» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

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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 …

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


getting pregnant and vulvodynia

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getting pregnant and vulvodynia

Post  londonlady on Mon Jul 02, 2012 8:35 pm

Hi Ladies,

Before I started getting V about a year and a half ago, I sadly lost a baby at 16 weeks. She was a surprise baby when I was 23 and had just started seeing someone, but we both wanted to keep her and were excited about the pregnancy, so it was a massive loss which has left me wanting to be a mum much earlier than I had thought before.

I often think about trying for another baby. Although it is not the right time financially at the moment, I hope that in a couple of years it will be something we will do.

However, at the moment the only thing which seems to help me is a relatively high dose of amytriptaline, which is not safe in pregnancy. I tried reducing it recently but the pain was too much. although I am hopeful about physiotherapy, I really worry that I won't ever be able to come off it and try for a baby.

I wondered what other people have done when faced with this and if anyone can share any positive stories about trying for a baby with vulvodynia.

I know I should try and focus on the here and now but it feels like a weight hanging over me sometimes!

thanks
xxx


londonlady

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Re: getting pregnant and vulvodynia

Post  Azraella on Wed Jul 11, 2012 9:28 pm

Hello,

I am so sorry to hear about your loss.

I am 27 years old 26 weeks pregnant and have had V for four years now, tried many treatments including surgery..twice. I have not found ONE thing that helps with the pain.

My partner and I have been together for 6 years and sense I got V we have sex very little so I am oddly lucky to have gotten pregnant.

I worry all the time that I will not be able to give 100% into being a mom because I am in constant pain...I am very excited and happy, don't get me wrong but it is hard being in so much pain all the time.

But if I can do it anyone can do it! So please never give up on your dreams of being a mommy because of V. Good luck to you when you do decide the time is right.

Also I have never tried anitripdylin (mspelled) I wonder if when I have the baby if it is something I should try? My pain is constant and unprovoked, it gets worse after sex(like the next morning) and it is a STRONG burning feeling. Is yours anything like that? Just asking because I might ask my Doctor if I can try this medication after pregnancy.

Azraella

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Re: getting pregnant and vulvodynia

Post  londonlady on Sat Jul 14, 2012 9:25 am

Hi Azraella,

Thanks for your message and congratulations on your pregnancy!

I'm sure it must be worrying thinking about being a mum and still being in pain, but I'm sure that you will do it! Pain can make me feel really anxious about not being able to do things but I am always surprising myself by doing those things anyway.

It could be worth trying Amitryptaline once the baby arrives (although I would think you probably can't mix it with breastfeeding, but I'm not sure). It has definitely helped me to live a more normal life with much less pain on a daily basis/when having sex.

It is actually an anti-depressant, but prescribed in lower dosages for pain relating to nerves (vulvodynia but also other types of chronic pain) which don't respond to other pain killers. You have to start it at a low dosage and then increase it slowly (i.e. each week) until you get to the dosage that blocks your pain.

It does have some side effects which I don't like: it can make you pretty drowsy and a bit foggy, and you get a dry mouth. some people also find it makes them put on weight, but I haven't had that, and have been taking it for about a year. You can't drink as well if you are taking it.

I found these side effects (especially feeling drowsy) were much worse when I first started taking it - but after about 6 weeks (which I know is a struggle!) they stopped affecting me so much and I could get on with my life almost normally. I take them at night so that I mostly sleep through the time they make me drowsy and just feel a bit more tired than usual in the day.

A physio also said that gabapentin could help - this is another drug which relates to nerve pain.

None of these pills are cures but they make the symptoms more manageable while I look for a way to tackle the problem.

Also, have you tried physiotherapy at all for your pelvic floor muscles? Mine is very tight with lots of trigger points (muscle knots) and I am seeing a women's health physiotherapist to learn how to relax it and essentially do some deep tissue massage to help.

Good luck - and take care in your pregnancy

xxxxx



londonlady

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