Vulvodynia Support
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» Hope to all my suffering ladies
Women's Health Physio EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Women's Health Physio EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Women's Health Physio EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Women's Health Physio EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Women's Health Physio EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Women's Health Physio EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Women's Health Physio EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Women's Health Physio 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!
Women's Health Physio 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


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Post  Sarah001 Tue Aug 03, 2010 6:49 pm

Well I'm back from seeing the Women's Health Physio and she was fantastic! She took details from me and we both agreed we thought my pelvic floor would be in spasm given that my pelvic joints are hypermobile so she did a quick internal examination and found I was contracting the muscles correctly but the left side was weaker than the right and the muscles on that side were kind of twitching on and off. I have rubbish endurance of the entire pelvic floor too and struggled to hold it after 3 seconds. Then she announced she had a biofeedback machine and I could have that done today too if I wanted, I was geekily excited about this so she hooked me up.

Apparently a normal resting tone should be about 2 or 3 and mine was, wait for it, a whopping 20!! Shocked She was astounded how high my resting tone was especially as I wasn't in the least bit nervous so gave me a variety of bits to do while I watched the line on the screen but I never got it lower than a still way too high 11. My fast contractions were very strong but the release part was problematic and I couldn't release the muscles properly at all. Rolling Eyes I've got some homework to do and she's given me a card to give to my usual physio so they can discuss things she can help me with such as releasing the external muscles and I go back in about a month to see if I've managed to get the resting tone down a bit.

I'm so glad I went, it's reassuring to know my pelvic floor could well be the cause of this. This lady had read all Dr Glazer's work and understood the resting tone is the vital part and she'd also read all the work by Diane Lee who specialises in the joints of the pelvis so we had alot to talk about!! She's treated other women with the same kind of situation going on (except my HMS) and they recovered so I'm hopeful right now.

Sarah001
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Post  julia Wed Aug 04, 2010 7:25 am

where does this miracle lady work? she sounds brill!

julia

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Post  Sarah001 Wed Aug 04, 2010 12:18 pm

In Lincolnshire, I'm really surprised and pleased, I had it in my head she wouldn't be very good and there isn't another one anywhere near close enough for me to get to. I'm so relieved she's going to be advising me. But girls, 20!! I'm still a bit shocked about that!!
Sarah001
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Post  naomi Wed Aug 04, 2010 4:06 pm

thats fab!...not about the 20 score but fab about finding a possible answer!! Very Happy
naomi
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Post  Sebby (Admin) Wed Aug 04, 2010 9:11 pm


Wow! I need to move there!! Does she know anyone in London???? hehehe

Glad you found her tho

xxxx cheers
Sebby (Admin)
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https://vulvodyniasupport.forumotion.net

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Post  tweety Thu Aug 05, 2010 10:35 am

Hi Sarah,

That's great news. Sounds like she knows what she's talking about. Wow, I can't believe you were at a 20!!!!

You've got quite a bit of homework to do then.

Let us know how you progress.

*hugz*

Sue

tweety

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Post  Sarah001 Thu Aug 05, 2010 11:26 am

Thanks Sue, I'm so glad someone else has done biofeedback before so they know how truly shockingly high 20 is as a resting tone!!
Sarah001
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Post  maggie Thu Aug 05, 2010 5:16 pm


Hi. There's a very good pysio at barts hospital where i had biofeedback, i had it done over 2 yeras ago, but at the time ,can't really remember what mine was, i do remember they said my muscles were strong. I might give her a ring have it done again,coz last time i went was the beging of the vulvodynia and my head was all over the place, i'll take it in alot more this time.

maggie x

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Post  Sarah001 Thu Aug 05, 2010 6:31 pm

That's the thing isn't it, your muscles can be strong in one way and lacking in another like my fast twitch fibres are great so no stress incontinence for me but my endurance holds start to give way and decrease after a few seconds which is partly why the spasm is there. Of course it's also possible to just have too much strength and tension too. It was totally fascinating to be able to see what was happening, I felt like I wasn't releasing the muscles very well so to have it proved with a machine was great.
Sarah001
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Post  Sarah001 Thu Sep 16, 2010 7:09 pm

Well, had my second appointment with the WH Physio today and I haven't done very well so far! This last month has been a nightmare, every time I do the exercises for releasing the pelvic floor it completely destabilises my pelvic joints and they pop and click for a few hours before getting wedged in a twisted position which is not only excruciating but also makes the pelvic floor spasm again. On top of that my regular physio who was supposed to be helping me with the external issues hasn't been available to see me for an entire month and has completely messed me around cancelling all my appointments then making them for the following week and cancelling it again so I've had zero help with any of my problems this month. I would find someone else if I hadn't already seen every single damn physio in the area with no joy.

So my readings today were a slightly reduced resting tone of 18 which I suppose is progress but just not much and I managed to get the muscles briefly down to a 6 during exercises but it was a "blink and you'll miss it" kind of brief!! So not as much progress as I'd hoped for after 5 weeks of hard work. I also find it incredibly hard to remove the probe afterwards, my pelvic floor spasms around it and I can't get it out! It's really sore having to tug it out past the inflamed skin too. I actually thought I might have to ask the Physio to help me with it today Embarassed but thankfully I finally managed it.

So I've got the same pelvic floor exercises for now and have also been found to be too dysfunctional to even do basic core stability exercises (she made me do some with the probe in to see what was happening and it wasn't good!) so all my core stability work has to be stopped for the moment and she's given me a couple of firing exercises instead. On the plus side this does prove my pelvic floor is reacting to the SI joints and isn't a secondary response to the vulvar issues so it does seem likely it's the cause of my problems. On the down side it isn't responding very well because of my hypermobility issues. Catch 22. I've got 6 weeks to try again.

Sarah001
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Post  Mouse Thu Sep 16, 2010 8:04 pm

I got my report from the new improved specialist she says I have a pronounced levator on the left side and suggested biofeedback. Can anyone translate that for me? The levator and the biofeedback are both foreign to me. Thanks.

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Post  Sarah001 Thu Sep 16, 2010 8:23 pm

Levator Ani is one of the muscles of the pelvic floor so I'm assuming she means you have one tight one? You have one each side so that's what I take that to mean. Biofeedback is the use of a machine to show you exactly what you are doing with the muscles and teaches you how to contract and release them correctly.
Sarah001
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Post  Mouse Sat Sep 18, 2010 9:29 pm

Owww now that makes sense, thanks Sarah. I remember her oohing and ahhing about my pelvic floor now. It's hard to listen intently when legs are in stirrups Aaahhhhhhhhhhhhhhhh!!!! She said I had bunched up muscles on the left side.

I had filled in the morning before my appointment getting a "relaxing" manicure and pedicure. Once my legs were flailing in the air I noticed all the lovely pink nail polish on my big toes has squished to one corner and I had a black ink imprint where my lovingly moisturised foot had met the writing in my shoes... nice!

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