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    » 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

    » Vestibulectomy
    Sun Aug 13, 2017 9:54 am by infinitelywondering

    » 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


    This worked for my mom

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    This worked for my mom

    Post  rk on Tue Nov 16, 2010 4:19 am

    Hi -- I'm new here. While I don't have vulvodynia, my mother did about three years ago and I joined to tell you about a treatment that worked for her. I recognize that this is anecdotal and not as useful as scientific evidence, but I'm relating this in the hope that it might help others.

    My mother who is 80 now, was not officially diagnosed as having vulvodynia as she has dementia and aside from doctors not knowing about it, it was very difficult to get accurate information from her, but when I read this article Vulvodynia: Dismissed and undiagnosed I knew that's what it was. She had had it for many months, we had been to many specialists (gyn, urologists, dermatologists), to no avail. She was also at a stage in her dementia when she could not use the bathroom on her own and the vulvodynia caused her to want to go every 5 minutes and she refused to use a diaper. Caring for her at home was exasperating. I spent days reading up on treatments on another online forum -- we tried just about everything. Then, in desperation, my parents started going to a Chinese medicine practitioner that my cousin had visited for another condition.

    This practitioner spoke no English and his daughter translated for him. His office was in his basement and looked like an herbalist shop. He prescribed an herbal medicine to be taken with water, a diet regimen that excluded chicken, fish, many kinds of vegetables and fruits and called for most food to be boiled, and an herb bath i.e. bags of herbs to be boiled for 1/2 hour, and applied to a rag on the abdomen for 20 min, twice daily.

    The vulvodynia started clearing up within 2 weeks as the practitioner had predicted. The treatment was very onerous and I don't know if someone less dedicated than my dad could have kept it up, as we kept it up for a couple of months.

    We'll never know if the vulvodynia would have gone away on it's own, or if the treatment had an impact. One curious side effect was that her nails turned a perly orange colour. (It looked like she was wearing nail polish, though she had never worn it in her life and had no access to any). A dermatologist said this did not indicate any harm and might have been caused by the diet change.


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    Re: This worked for my mom

    Post  elkrunrockies on Tue Nov 16, 2010 4:28 am

    Because I have both Interstitial Cystitis and Vulvodynia I would suggest that maybe your bother had IC perhaps with vulvodynia as well. Vulva pain does not usually make you want to urinate every 5 minutes - it just hurts! Would it be possible for you to give me details of the herbalist you saw? and where was he located? Maybe I could correspond with him. You could email me at elkrun8@comcast.net. thank you A

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    bathroom use

    Post  rk on Tue Nov 16, 2010 4:47 am

    I mentioned that she wanted to use the bathroom every five minutes to indicate how difficult this was for all of us. I should have clarified however. When I hid the toilet paper and told her she could only have some after she urinated, her behaviour changed. I suspect that she really wanted to use the bathroom because wiping offered her some momentary relief and that the urge to urinate was not real/physical.

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    Re: This worked for my mom

    Post  Sarah001 on Tue Nov 16, 2010 8:25 pm

    What a result! I've considered chinese herbs but I'll probably go down that route once I've relaxed my pelvic floor. Vulvodynia can cause urinary frequency if the pelvic floor is tight, when my pelvic floor was at 20 I had urinary urgency and frequency from that.

    Elkrunrockies, have you ever tried coconut oil? I know it sounds a bit far out but I read a post on another forum from a lady who had IC and Vulvodynia and she started eating coconut oil and both greatly reduced, it might have been a coincidence of course but it just stuck in my mind.
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    Re: This worked for my mom

    Post  Sebby (Admin) on Tue Nov 16, 2010 9:06 pm


    Thats great rk, we welcome all advice and help. Personal success stories are as valuable as any science!!

    That does sound interesting! where did you see this herbalist?

    Sebby
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    where

    Post  rk on Wed Nov 17, 2010 1:22 am

    The herbalist we saw is in Mississauga, a suburb of Toronto in Canada.

    As I wrote to elkrunrockies, he spoke no English and even with a translator, it was difficult to understand his explanations as the Chinese concept of medicine seems very different to what we're used to in the West. For what it's worth, he had a certificate for 'Chinese Medicine' over his desk.

    He also relied alot on visual cues, so physical presence seemed necessary. Though I wasn't present, I was told he initially diagnosed my mother by extracting some fluid from her hand and touching her skin. He called her condition 'an infection' and said the treatment would last a certain period -- I think it was about 2 months. We followed his instructions exactly, even though it would have been easier to cut corners -- for example by microwaving food instead of boiling it -- since they're chemically identical. Repeated visits were necessary, I think weekly or biweekly.

    I suggest finding a local practitioner.

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    IC and vulvodynia "search for solutions"

    Post  elkrunrockies on Wed Nov 17, 2010 2:40 am

    I appreciate the input. Perhaps the coconut oil alkalized the system? the acid/alkaline balance is extremely important, and I am striving to be more alkaline. Phion Greens might be the answer to help with this. I bought some Greens First yesterday but did not check the ingredients. Too many items that insult my IC and probably the vulva pain. Going to try the Phion variety. I have done pelvic floor therapy 2/wk for almost a year, and it has helped the vulva pain, dropping my pelvic floor. I'm on Medicare so have to take a break since they won't pay for maintenance. Our Healthcare is so out of whack I wonder what we are going to do?

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    Re: This worked for my mom

    Post  Sarah001 on Wed Nov 17, 2010 1:51 pm

    I don't really know why this worked, I do know coconut oil contains alot of bits found in breast milk so it's supposed to be good for the immune system but I can't remember how this lady came to the conclusion it might help her. Have you looked at the IC network forum? If not if you google it there's loads of posts about IC and vulvodynia, I often find myself on there because of the vulvodynia posts.
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    Re: This worked for my mom

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