Vulvodynia Support
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» Hope to all my suffering ladies
My Poor mum EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
My Poor mum EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
My Poor mum EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
My Poor mum EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
My Poor mum EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
My Poor mum EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
My Poor mum EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
My Poor mum 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!
My Poor mum 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


My Poor mum

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Post  Paula Mon Oct 11, 2010 8:31 pm

Hi everyone,
Looking for any help and advice for my 70 year old mum, who has been diagnosed with vulvodynia 2 years ago, she has been put on huge amounts of meds and has seen a gyna, pain clinic but nothing is giving her any relief at all. The strangest thing is that this started with no warning, no uti, no thrush nothing, when i read about others and this problem, uti's and thrush are normally spoken of.

The worst problem she has is sitting down, she cant sit to eat her dinner or to watch tv or when out with friends has to keep standing up as she is so uncomfortable, she also has copd and gets very tired, so all this standing and pain is ruining her life, it is breaking my heart to see her cry and says she does not feel she can spend the rest of her life like this,i just want to find somethin that might help her, has anyone got anymore ideas, doctor is now thinking perhaps to try injection therapy in london? has anyone tried this, or tens machine or acupunture???
Forever hopeful
Paula

Paula

Posts : 6
Join date : 2010-10-11

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Post  Sarah001 Tue Oct 12, 2010 12:33 pm

Hi Paula, a couple of things spring to mind. With your Mum being post menopausal there's a chance it's hormonal. If she's not on HRT it might be an idea to try it and if she is already on it perhaps it needs changing? As she's 70 if there's anything to see on the skin it should be examined by a specialist dermatologist, lichen sclerosis is common in older women and if there's any suspicious lesions they should be biopsied to rule out cancer (not common but if there are any it should be checked in a woman your Mum's age). The last thing is as we get older our muscles get weaker so she may have some pelvic floor issues which a women's health physio will be able to test for. I hope some of that is of help and good luck.
Sarah001
Sarah001

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Location : UK

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Post  tweety Wed Oct 13, 2010 11:54 am

Hi Paula,

What kind of symptoms is she experiencing?

For short term relief have you got her sitting on a donut to help relieve stress on her body? I also agree with Sarah's suggestions too.

Let us know... we'll help figure out something...

*hugz*

Sue


tweety

Posts : 71
Join date : 2010-03-14
Location : Melbourne

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Post  Sebby (Admin) Thu Oct 14, 2010 7:25 pm


Hi Paula, what meds is she on and what has she tried so far.

Also what is the injection therapy I am due for a nerve block injection soon and another lady who's husband is on here is trying botox injections.

The foam doughnut idea is a great idea..had a quick look on Amazon and this one looks good

http://www.amazon.co.uk/CUSHION-Moulded-Excellent-OPERATIVE-Relief/dp/B001RBZ54C

Sum things that I have found that have helped are:

Not sitting in a bath at all and only showering. I do not use any soaps down there at all only cool water
Wearing only white cotton knickers, no tights no man made fabrics
Wash the knickers on 90 degrees to kill bacteria and do not use any washing powder at all
wear only skirts or leggings as these are soft and do not rub vulval area
Im currently using a TSE/TENs machine..its early days yet but am finding it good...have a flare up at the moment so am seeing in the next few days if the machine will take off the flare up..this is the one im using

http://www.acticare.com/

It is more expensive than a normal tens but it is suppossed to be better..maybe try a cheaper tens for a bit to see if this kind of treatment is beneficial as Ive only just started using it

I do not wear knickers indoors only a long skirt
If pain is bad I take some co-codermol temperarily 15mg - this is cos at present I am already on meds for panic attacks and the anticonvulsants/amitriptalyne may not mix well with these. (sorry cant spell the medicine names well!)

I would also suggest a visit to a womens physical therapist

I do hope your mum can find some relief

Sebby
xx



Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Paula Thu Oct 14, 2010 9:31 pm

Hi
Thanks for taking the time to answer, she is on gabapentin 800mg a day, amitriptyline 30mg at night co-codamol dont touch the pain tried tramadol, pregabalin no good have bought her a donought to sit on
, i think she should try acupuncture, anything would be good ?????



Paula x

Paula

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Post  jules Fri Oct 15, 2010 3:18 am

Paula, i know your mom is older so, i don't know how high of a dose they will go on the gabepentin. it took me 3000 mgs for pain relief. it did help, but 900 mgs was not nearly enough for me. I am trying lyrica as well..on 300 mgs..the increase to 100 mgs's gave me relief, but not so much anymore. the donut at all times is a must. she is sitting on her pelvic muscles rather than her pelvic bones..the muscles are wrapped in nerves. besides the biopsy etc.. (i'm guessing they check on all of that if they gave her the Vulvodynia diagnosis? but, you never know). Physical therapy has been helpful for some women. i am seeing a p.t. right now who measured my pelvic floor resting rates, checked my walls etc. (btw..my walls and resting rates are very good) we are working on toning external muscles and i got a prescription for a tens unit (never tried one). so..insurance will pay for one and i will bring it home once the p.t. shows me how to use it. cold gel packs kept in the refrigerator can give instant relief for burning pain. I feel you..i would hate for my mom to feel pain like this.(yes i'm from the U.S. we don't say mum here :-) ) good luck.

jules

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Join date : 2010-03-17

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