Vulvodynia Support
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» Hope to all my suffering ladies
This worked for my mom EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
This worked for my mom EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
This worked for my mom EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
This worked for my mom EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
This worked for my mom EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
This worked for my mom EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
This worked for my mom EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
This worked for my mom EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
This worked for my mom EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


This worked for my mom

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This worked for my mom Empty This worked for my mom

Post  rk 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.


rk

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Join date : 2010-11-16

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Post  elkrunrockies 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

elkrunrockies

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This worked for my mom Empty bathroom use

Post  rk 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.

rk

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Post  Sarah001 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.
Sarah001
Sarah001

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Post  Sebby (Admin) 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
xx
Sebby (Admin)
Sebby (Admin)
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https://vulvodyniasupport.forumotion.net

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Post  rk 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.

rk

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Post  elkrunrockies 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?

elkrunrockies

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Post  Sarah001 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.
Sarah001
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