Vulvodynia Support
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» Hope to all my suffering ladies
Anyone else doing this? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Anyone else doing this? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Anyone else doing this? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Anyone else doing this? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Anyone else doing this? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Anyone else doing this? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Anyone else doing this? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Anyone else doing this? 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!
Anyone else doing this? 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


Anyone else doing this?

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Post  Sarah001 Sat Jul 09, 2011 8:20 pm

I'm currently reading a book about pelvic instability in pregnancy (I'm not pregnant I just read everything pelvic related I can find!) and there's some interesting stuff in it. It doesn't mention V but as alot of us have pelvic stability issues I wondered if anyone else was doing this: Is anyone else standing with most of their weight on one leg more than the other? It's mentioned as something that upsets the alignment of a lax pelvis and keeps the misalignment going and as we all know there's a link between V and these kinds of things. I realised I was doing it really badly and weirdly I was putting most of my weight through my worst side. Anyone else doing this? To find out you need to concetrate on what you're doing when you stand still, or use a Wii board and it will tell you!

The author talks alot about tight adductors too and says tight adductors usually equal tight pelvic floor muscles and she's right again, I've got trigger points galore in my adductors and I've only just got the left side so it will abduct to normal amounts with my knee straight so it's more the long adductors on that side and the short ones on the right. And I have noticed when I lay with my legs bent it tightens them up really badly and it shouldn't. My adductors were the reason the doctor who "diagnosed" me suggested physio as a first course of action because when she got me into examination position it looked like I was tensing my thighs really badly and I wasn't at all.

Just interesting to me, especially the weight bearing one as if I was asked which leg I use more I'd have chosen the other one but sure enough I'm putting most of my weight through the loosest SI joint and just helping keep the dysfunction going! Rolling Eyes I know some of you won't think this is a very relevant post and apologies for waffling on but I know there's a big link between V and SI joint dysfunction. Anyway, I'll stop now...! Laughing
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  lolainslacks Sun Jul 10, 2011 12:30 am

I find this really fascinating. I have been shifting my weight constantly from one leg to the other for years. I seem to be incapable of standing straight up -- my weight is always dramatically shifted onto one side. My lower back becomes very sore if I stand straight for too long, so I do this to make it more comfortable for myself.

I have a lot of problems with my pelvic floor muscles. I can tighten, but I have never ever been able top untighten. I just don't know how to relax those muscles, and descriptions of how other women do this have never helped me. Because I have so little control, they seem to have a life of their own. I am trying to use dilators every single day, but if I'm stressed, or upset, or sometimes just for no reason whatsoever, my muslces will feel a lot tighter than usual, and I am powerless to do anything about it, which really limits my progress. It seems that my pelvic 'situation' changes from day to day and I just have to wait and see what it's going to be like. I don't have vaginismus, and have been told repeatedly by specialists that I don't, so it's not a case of me having 'muscles spasms', it's just a mysterious tightening that I can't explain.

I don't know much about pelvic instability or what causes it, but I am grateful for this post. I think it is worth looking into this sort of thing, and now that I know there is a possible link I will definately be making a conscious effort to change the way I stand. Thank you.

lolainslacks

Posts : 115
Join date : 2011-04-18

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Post  Sarah001 Sun Jul 10, 2011 12:27 pm

You do sound as though your pelvis is unstable, I too do the shifting thing even when I look like my weight is balanced between both feet it isn't. The author also said to put the weight onto the heels more and feel the lower back as you do it so you can find the position that is the best for relaxing the back muscles. I'm like you and my back gets really tight and tired if I stand for any length of time but apparently our muscles aren't supposed to get tight from standing, if we stand correctly the muscles are relaxed, who knew?!! Laughing I now make a point of shifting my weight until it feels centred and checking I'm on my heels by wiggling my toes around and if wiggling my toes doesn't affect my balance I'm doing quite well! I also wonder if you have a leg length discrepancy? A pelvic rotation can cause this and it's something that would also make you shift from one foot to the other, have you had that checked by a physio at all?

I'm hugely interested in pelvic instability because I've had it for years (long before V came along) so I've done alot of research into it and consider myself to be quite knowledgeable at this point! One physio said it was a shame I couldn't get better because I'd have breezed through the physio exams!! Laughing The book I'm reading is one I bought out of desperation to see if there was anything else I needed to know and it's useless to me in parts because it's about pregnancy but great in others. It's one of the few books I've read that mentions inflares and outflares in detail and I have one of each of those and have noticed it's hard to find information on them so I'm reading it thoroughly now.

I have the same issue with my PF, I can't release it at all and it's always in spasm even when I'm trying to release it which again is related to my pelvic instability and is my body's way of trying to stabilise the pelvis. Pelvic instability has alot to answer for!
Sarah001
Sarah001

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Join date : 2010-06-11
Age : 50
Location : UK

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Post  Aussie Mon Aug 01, 2011 5:50 am

Have you tried biofeedback? I did not even know how to relax my muscles down there either untill I tried this. The visual just makes your brain do what it is suppost to and you just relax the muscles. Then you can hold onto that feeling and do it without.

The machine I used had lights on it. The aim was to get the lights to the bottom by relaxing the muscles. There was a small probe too.

Hope this helps.

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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Post  Sarah001 Mon Aug 01, 2011 12:38 pm

Yes if you remember Claire I'm the person who started with the ridiculous resting tone of 20. I got to 12 last time I went but that was November last year and I'm sure my resting tone will have crept up with all the stress I've had this year so far. The machine I was on didn't have lights it had numbers in a graph kind of setting that you watched as you did the exercises and I once managed to get to 6 but it was a blink and you'd miss it occasion, 12 is the lowest I got for any length of time which obviously isn't low enough but I have a vicious cycle going on where I stop clenching the pelvic floor then lose all stability in my right SI joint which tightens it back up and the pain makes me clench again so stabilising the SI seems to be the only way I can break that but my hypermobility issues mean that's next to impossible. I'm currently trying to get enough money coming in to afford physio again but it won't be for a while yet.
Sarah001
Sarah001

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