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    » From a concerned husband
    Fri Jul 13, 2018 6:02 pm by emalita

    From a concerned husband

    Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

    Hello everyone,

    This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

    I’m sure a lot …

    Comments: 1

    I'M NEW - Do I listen to my gyno who I feel has it wrong?

    Fri Mar 09, 2018 6:17 pm by Tunes25

    Hello!

    I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

    To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

    Comments: 9

    Hi girls! New in this forum

    Fri Jul 13, 2018 2:31 pm by Gaby

    Hi everyone!

    Also joining the V club, Here my story:

    It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

    Comments: 0

    Newbie and feeling helpless

    Wed Jul 11, 2018 1:52 pm by Taylor1

    Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

    Comments: 1

    I'm new to this forum and would love some advice! :)

    Tue Jun 05, 2018 4:13 am by anikita

    Hi lovely gals!

    I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

    I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

    Comments: 5

    Gabapentin Gel. or other topical creams

    Thu May 10, 2018 9:43 am by Rosie21

    Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

    Comments: 1

    What has been helping ME (much less pain over time!!)

    Wed May 16, 2018 3:43 am by leoscc

    Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

    1. I …

    Comments: 0

    I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

    Mon Mar 12, 2018 4:33 pm by totallycured

    Hi,

    Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

    Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

    Comments: 4

    Condoms Less Painful?

    Mon May 07, 2018 3:35 am by stillinpain

    I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

    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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