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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» 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


Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

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Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  min77 on Fri Oct 15, 2010 7:54 pm

Hi. I’ve been suffering with stabbing vaginal pains for about three years now. I’ve got good days and bad days, but I’m never pain-free. Most days I struggle to go about normal life, and there are at least two days a week where I barely manage to walk. After a long odyssey via a whole host of different specialists, I was diagnosed with essential vulvodynia earlier this year.

I’ve now tried Amitryptiline, Gabapentin, Carbamazepine and Pregabalin, and none of those have helped. I’ve read that some women benefitted from electro acupuncture, and I’d like to give that a go. Has anyone got any experience with electro acupuncture? I live in North Warwickshire, and there don’t seem to be many electro acupuncturists near me. I’d prefer to see someone who has an understanding of the condition and is interested and caring. I think it is particularly important for that kind of thing to work if I can build a rapport with the person.

I’ve had more than my share of doctors who didn’t really seem to be genuinely interested in helping me. I feel a bit like I’ve been put into the category ‘vulvodynia’ as there seemed to be no evidence of another problem (CT, MRI and bone scan didn’t show anything), but the specialists have never really asked many questions or wanted to listen to what I was trying to describe. Since I was diagnosed, I have tried to gather as much information as I could, and the more I read, the more confused I get. I keep reading that most women find that they are most comfortable when they stand or walk and that they find sitting quite painful. I’m the complete opposite. I can’t walk long distances, and most days I’m lucky if I make it round the supermarket without wanting to curl up on the floor. But sitting is no problem for me. I’ve also read that most women who suffer from vulvodynia find that their vulva is highly sensitive and that they can’t enjoy a normal sex life. I don’t find that. There seem to be so many different kinds of vulvodynia, and none of them seem to really describe my case. I’d like to know if I definitely have vulvodynia and if so, what kind. I imagine that might narrow down the list of things I need to try to find something that helps.

I’d really like to hear from other women who are going through the same thing. Is there anyone with a similar case to mine? Has anyone got experience/advise on electro acupuncture?

Thanks and take care.

min77

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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  Mouse on Sat Oct 16, 2010 2:54 am

Hey there,

I also struggled with "fitting in" to a support group. I have generalised unprovoked vulvodynia, I can also have sex but have constant pain. I was almost embarrassed to mention that initially.

I can now sit "almost" comfortably most of the time sometimes it's more on my tailbone - which is particularly bad for my back.

I feel like I live a double life and that's probably the same for all of us. I think we are all different and that there are so many variations, comparisons are probably a waste of energy. Vulvodynia is really a broad term for vulval pain, initially I had PGAD which also fits under that general term. People in our every days lives do not get it and a chronic pain condition can steal your soul if you let it. Finding people who understand can be a life saver.

Have you found a specialist in vulval pain or a pain clinic? I now see a sub specialist in vulval pain, she is amazing. She's from the UK - thanks for that I'm hoping she wasn't your only good one Very Happy

Sorry I don't know anything about electro acupuncture. I have done the Ami and am now on Gabepentin, I'm hoping I don't need to keep progressing in the drug stakes.

My therapist said I should be honest with my friends about how bad it is getting through a day. I've tried that. It's not that they don't care, they really don't get it.

I've never heard of essential vulvodynia actually I wish I'd never heard of vulvodynia at all.

I hope you find some answers on here.

Take care, kia kaha.

Mouse

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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  jules on Sun Oct 17, 2010 3:26 pm

welcome,

I would agree w/ Mouse. We all have different kinds of Vulvodynia. Unfortunately, the doctors don't know the cause or the cure so we are lumped into a group of women w/ Vulvar pain. Like Mouse, i am the medication regiment. However, I also see a pelvic pain specialist who is a Physical Therapist. She has determined the resting rate of the muscles in my pelvic floor and she is working w/ me on strengthening muscles in my pelvic area. I also will have a tens unit, which has electrodes that attach to areas in your body (lower back in this case)to interrupt the messages the brain gives to the nerves. there are other women on this site who have them. they can comment..but, that may help you. i have not done acupuncture. I have heard it can help some women. maybe others here have. Good luck! Stay positive...we'll figure it out. Like Mouse said, find a Pelvic Pain Specialist who knows what they are talking about.

jules

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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  min77 on Wed Oct 20, 2010 11:29 am

Thank you so much for your comments, Mouse and Joules. It's helps to know that other people are going through the same experience, although it makes me angry to think that there are so many people suffering in silence every day.

I think my next priority will have to be to find a vulval pain specialist who is experienced, caring and willing to work with me. Wish me luck.

min77

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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

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