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    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: 4

    Newly diagnosed

    Tue Oct 10, 2017 8:37 pm by Brevispink

    Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

    Comments: 9

    Recent "Poke" Pain - So Confused/Losing My Mind

    Thu Oct 12, 2017 9:26 am by kelseybeth23

    Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

    Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

    Comments: 5

    Does anyone else experience this?

    Sat Oct 14, 2017 5:21 pm by Angelmegs

    Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

    Comments: 0

    Post Full Vestibulectomy - 5 Years Later - Please Read

    Tue May 02, 2017 6:18 pm by jen007

    Hi All,

    It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

    For 4 years post …

    Comments: 4

    Do you ever worry that you're making it up?

    Fri May 27, 2016 6:50 am by Lucci

    Hello,

    I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

    A few years into treatment, I had the diagnosis of PTSD added on for …

    Comments: 7

    Clitoris Issues

    Tue Apr 28, 2015 8:17 pm by January

    I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

    Comments: 2

    Cured of Vulvodynia

    Wed Aug 17, 2016 1:39 am by angelique2016

    I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

    Comments: 10

    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: 1


    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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