Log in

I forgot my password

Latest topics
» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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

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: 5

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

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Anyone else doing this?

Go down

Anyone else doing this?

Post  Sarah001 on 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
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: Anyone else doing this?

Post  lolainslacks on 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

View user profile

Back to top Go down

Re: Anyone else doing this?

Post  Sarah001 on 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!
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

lolainslacks

Post  Aussie on 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 : 227
Join date : 2011-03-15
Age : 29
Location : Queensland, Australia

View user profile

Back to top Go down

Re: Anyone else doing this?

Post  Sarah001 on 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.
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: Anyone else doing this?

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum