Hello everyone :)

Hello Ladies,
Just stumbled upon this site whilst looking for new info on Vulvodynia...how lovely to talk to real people with the same condition!

Im from England and was diagnosed with Vulvodynia at 17...3 years later and im still suffering badly. Ive been to doctors, been on creams/tablets/therapy you name it and to no affect. Sex just does not happen in my relationship, have been with the same guy for almost 4 years and he is super and so understanding, bless him!

So, just to say 'Hi' to everyone, hopefully I can get some useful advise here and support as im reaching the end of my tether with this stupid condition!

Hi and welcome to the forum, there's loads of info floating around on here so have a good read through. When you say therapy what kind of therapy do you mean? Glad your other half is understanding, alot of men aren't so sounds like you've got a good one!

hello! Im naomi pleased to meet u!!!

I stumbled across this site at the start of the year on the Daily Mail site....god send!

so lovely to form friendships with pep that completely understand how mentally/physically we are affected...booooooooooo.

All here to support each other so welcome to the forum Reader!

Nai xxx

Hello and welcome to the fourm

I've had it now for over 2years and finding a decent caring dr is the hardest part!

Ive been put on a couple of contraceptive pills, had a general nerve block and tried loads of creams. Its all taken so long and they havnt even tried meds yet!

Have a look aroud the forum as we talk a lot about various treatments and theories.

Im currently trying the whole pelvic floor dysfunction theory and am due to start bio-feedback (home training package) from Dr Glazers website I have also started work with dilators and am reading the 'Ending Female Pain' book by Isa Herrera.

Note im treating myself now as Drs have been so crap!

Ive only just started along this route so will not know just yet if any of it will help but I do hope so

Take Care
Sebby
xxx

Yeah like the 'just relax' line works! Oh my if we couldnt have thought that up ourselves!

What kind of Pelvic Floor excercises? Im only just about to begin this and from reading up on Dr Glazers theory the standard Pelvic Floor stuff that is just mainly used for strengthning is not helpful for Vulvodynia

I was watching his DVD the other day and he was saying its about the control and not the strengh of the exercise. Also its not so much a 'closing' up of the vaginal walls when you do it but a 'lifting' its a little difficult for me to understand at the moment but he said to try to insert two (yeah right) fingers (I used one!) about halfway (where the finger bends)and set about contracting you pelvic floor..if you feel a lifting up or 'sucking up' and your finger lifts with it then you are doing it right!

I spend about 15 minutes trying this and could tell what he meant but its not easy but I reckon you get it with practise..

Next I have to plug myself into the little bio-feedback maching with flashing lights..and try to understand that! lol

Sarah is our pelvic floor expert so im sure she'll help us along the way!!

Hey reader

Welcome...im wondering if you have tried Ami? I am considering this...just need to shop around for a doc that will prescribe it to me as every other doctor I have seen thinks Im fucken bananas and treats me like a circus freak.

My story: treated for yeast and obviously uneffective, then from doc to doc...and finally diagnosed...but alas with all those doc visits no real help. Have started self medicating with anti histamines...no real difference.

I am scared to death of any more creams...especially steroid based...a real no-no.

You can visit my page if you wish at www.livingwithvulvodynia.ca

Im tired (of all this)...and really the lack of medical support.

Have been lucky as Ive found a female counselor who is familiar with this...actually believes me...but I want to get better and just stop seeing specialists....

Meh.

Hi reader

I'm 22 and have had this stupid condition for almost a year now. My physical therapist figured out that it was most likely caused by bike riding that my husband and I did frequently last spring (I hadn't ridden a bike since I was in Jr. High). I have constant spasming in my pelvic floor, burning/rawness during penetration, burning when I pee, pain when I sit...grrr. I am also technically a newlywed (married in June of '09) and never had any problems down there until the bike riding. I think it's safe to say I will never ride a bike ever again. But anyway, sex has been a no-go since I've been having symptoms. My husband is very understanding (moreso than I am)but I just feel like a failure most of the time. It's kind of hard to go on without sex when society is throwing sex in your face every second of every day.

But that's enough negativity...nice to meet you and glad you found us! This site is such a blessing to me, it helps so much to actually communicate with other women going through the same thing. Hugs!

its great (well actually its pretty crap, no one should have to go through this) to hear all of your stories, its nice to relate to others!

Noni, do you mean amitriptyline...if so yes, I was on that for about 8ish months to no effect. They then tried Nortryptaline which seemed to work better (really not by very much!) but I couldn't stay on it incase I became addicted to it, I think I took this for nearly a year, maybe over a year??

The pelvic floor exercises were mentioned as part of my 'counselling' and was thought that if I knew how strong my pelvic muscles could work I could relax better before sex...there was no medicinal purpose to this and no I dont think for my condition it would have make a difference.

Thx reader for the Ami advice. Just willing to try anything at this point. Kind of wreckless...

SO reader are you taking anything at the moment?

Any relief found ?

I think the only thing to be aware of with the ami and other drugs is that because they are anti-depressants they can actually make you a little depressed, just one of the winning list of side effects! The only real side effect I had was feeling quite drowsy, usually in the mornings I found it hard to wake up properly and had quite a dry mouth but other than that it was fine.

Im not taking anything at the moment, Im not even seeing a gynae and havn't for about a year or so. Simply because they ran out of options there was literally nothing more they could do for me and it became a waste of time going. maybe I should go back soon and see if anything new has cropped up but I highly doubt it. Also, im at uni now and prescription charges would be a killer as my finances are super tight.

Im going to try getting over the fear of it all, sex hasn't been on the cards for a long while and I think psychologically i'm unprepared for it so im just beginning to build that relationship again and become comfortable with the idea of sex. Maybe that will be half the battle won, fingers crossed.

Oh my god the Ami dry mouth, mine gets really, really bad and I'm drinking water constantly just to be able to talk!

Reader I'd give the pelvic floor rehab another chance but done properly with a biofeedback machine so you can see what's happening. I tried to do kegels on my own first and made things worse because I had no idea I wasn't relaxing the muscles at all. I've got a long way to go but they're not totally clenched all the time now.

The lifting versus closing makes sense Sebby, to lift you have to use the deep muscles higher up the vagina whereas to close you can avoid them and just use the muscles right near the vulva which are usually tight anyway. Hope you'll tell us more about Dr Glazer's advice!

Hey Reader I would deff give the Physio Pelvic Floor stuff a go.

I too thought that why would a muscles cause vulval pain!

But this is Dr Glazer's theory and I will try to explain it as well as I can:

Gae Rodke The co author of 'The Vulvodynia Survival Guide' treated a women who had had pelvic infections, even after the treatment she still had persistant pain. After examining her they found this was assosiated with spasms in her pelvic floor muscles. They decided to try physical therapy including bio-feedback to relieve the spasm. Her pain decreased and eventually she was pain free. Over the next few years other women were also seeing a reduction in thier pain.

She approaced Dr Glazer and eventually after research and finding that women were helped by this he developed a treatment protocal which is based on this theory:

In any area of the body where there is soft tissue pain the muscles around it tense up. This is called Guarding. This is the body's way of protecting infected or injured tissue and to stop the spread of infection.

Now for some reason even after an injury or infection is cleared the pelvic floor still remains tense and in spasm. The tension in the pelvic floor is NOT the cause of the pain initially the infection (maybe yeast or urine) or injury (bike riding! childbirth etc)is, what the pelvic floor ends up doing by remaining tense is to help maintain the pain and creating further pain..This is called Pelvic Floor Dysfunction

Why would this tensing maintain the pain? - As a muscle spasm carries on long after the initial trigger it alters the blood flow to the area and blood is reduced to the tissues. This limits the tissues access to nutrition, oxygen, hormones and auto-immune chemistry. All of these help to heal irritated tissue.

As well as this chronic pelvic floor tension releases other chemicals such as Lactic Acid (this aggravates tissue and muscle and creates pain and more tension) and Substance P (this specifically triggers pain sensing nerve fibers)

So in summary there was an original injury or infection which then set off muscle tension, this muscle tension becomes chronic and disrupts the normal self healing chemicals getting to the vulva and releases more irritating chemicals into the vulva...

By using physical therapy and bio-feedback (so you know you are doing it right) you can rehabilite the pelvic floor. Reduce and hopefully stop the release of irritating chemicals and allow the self healing chemicals to fully heal the vulval skin and tissue..

The first study on 50 patients.. (Glazer, Rodke et al) 1995 just over 50% of patients on his specific bio-feedback protocol were completly pain free after several months of treatment (they say you should do it for 9 months) and 83% of all patients had had pain reduction.

3 years later patients who were pain free were still pain free (Glazer 2000)

I hope this made sense! Im soon to start this home training Glazer kit so I will keep you all updated!