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» Good few days!!
Yesterday at 9:23 pm by smile22

» I GOT THE SURGERY!!
Yesterday at 8:17 pm by BBnSC

» Losing Hope Big Time
Yesterday at 7:06 pm by ivyrose

» HOW I CURED MY VULVODYNIA - PLEASE READ!!
Yesterday at 6:56 pm by ivyrose

» surpport group in london
Yesterday at 3:21 pm by maggie

» Just joined - lots of questions - let's beat this thing!
Yesterday at 2:11 pm by Loulou

» Crotchless tights
Yesterday at 1:52 pm by Loulou

» Neogyn cream - a new treatment for Vulva Pain?
Yesterday at 11:20 am by bluekangeroo

» Has anyone seen Helen Forth - physio at royal free?
Yesterday at 10:07 am by bluekangeroo

Losing Hope Big Time

Wed May 09, 2012 12:08 pm by Chelsea1991

Hi, I'm 21 anyway I am losing hope in my treatment i have had at least five tablets none work i am currently on neurontin, I have been on so many stuff i started to lose hope, i dont feel nothing work and worst i feel depressed by this all, i just dont understand how nothing come work, I think i might have ic too which i got another set of tablets, i am thinking about the surgery but scared of it …

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Just joined - lots of questions - let's beat this thing!

Fri May 18, 2012 11:04 am by bluekangeroo

Hello everyone, I just thought I would write a few lines to say hello, I have just jumped in and started firing questions at you all which seems a bit rude. I thought I should say hello and introduce myself.

I'm 35 and have had this pain for about 10 years - ever since a run of urinary and vaginal infections way back when I was travelling in Bankok.

I finally got a diagnoses last year of …

Comments: 1

New to this forum

Thu May 17, 2012 10:59 pm by ninjastar

Hi ladies,
It's very nice to meet other women who share this same issue. I have had vulvodynia for about 4 years now... I went off the pill about 2 years ago and it has significantly improved since then. About 6 months ago, my pain went away to almost nothing. Also, I was using lidocaine on and off and it helped a lot. Well I moved 2 months ago and that partner and I split up, so I have not had …

Comments: 0

HOW I CURED MY VULVODYNIA

Fri May 04, 2012 12:44 am by ivyrose

Hello. Please read this, I want to help as many women as possible. One thing I have learned over the last 3 yrs suffering from this condition is NOT TO ACCEPT EVERYTHING YOUR DR TELLS YOU.

I posted on here a while ago claiming that I had experienced a large decrease in my provoked pain due to taking baking soda baths. Since then the pain came back with vengeance and I realised I was wrong. The …

Comments: 2

Hello all feegal not a happy person atm

Tue May 15, 2012 11:21 am by Feegal

Hmm I am soo wanting to do more exercises with this new machaine I have, it helps to show me how weak or strong my pc muscles, my therapist told me to only start 5 minutes, i did try going with 15 but hurt too much, ( atm I am also bleeding I have the mirena, its just started with the bleeding not happy really,do any of you do pc exerrcise while your bleeding or you just take care and not do …

Comments: 0

Hello I am new, and am looking forward for some support

Sat May 12, 2012 12:21 pm by Feegal

Hello wow, ( I feel soo silly for years I have had this pain for soo long, originally I thought I had vaginismus) for all those years talk more soon not feeling well wil write more later sorry all. I cant wait to connect with you al and explain my story to you all how its effecting myself & my husband soo not fun thats for sure. Sad

I feel I had vaginismus for years, but really …

Comments: 2

Young and not sure how to handle this???

Sun May 06, 2012 6:08 am by cdt2010

Hello all! I normally do not get on these kind of things, but I don't know where else to turn. I have Lupus, which is what they say caused my vulvodynia. I have known about my vulvodynia for about six months and I have known about my Lupus for one year. I am twenty years old, and my family has no idea. I have tried everything I can think of. The gynocolgist (might not have spelled that right) did …

Comments: 0

new to the forum, newly diagnosed

Tue Apr 03, 2012 10:22 pm by It Hurts

I've had such stinging pain at the insertion of anything in this area since August 2008. I was six and a half months pregnant and went to my OBGYN immediately and said, "something's wrong". Of course, it was blamed on the pregnancy and the "blood flow" to that area. I had a C-section (age 38 when I had my first and only daughter, Caroline) and waited the 2 months before …

Comments: 5

hey girls.........................

Wed Apr 11, 2012 1:01 pm by ak1981

I'm 30 years old and I'm from Croatia, Europe. Few weeks ago doctors told me that I have V. I have it for little bit more that 1 year. I think the triger was HPV infection.
I'm reading your posts and still I don't want to belive that there is no cure for V. I can't belive that the old nice life is over. I simply don't want to belive it. Especialy now when I have finaly found the love of my life.


Comments: 1


Recent findings during my physical therapy

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Recent findings during my physical therapy

Post  [Sara] on Sat Feb 05, 2011 7:24 pm

My physical therapist just took a class on vulvodynia and now has a lot of new techniques she'd like to try on me! She feels that now she understands the disorder better, but at the same time she feels that she has so much more to learn (as do I).

At her class she learned that for some women, vulvodynia can be made worse by connective tissue disorders. She did some new evaluations on me and discovered that my bladder, uterus, and rectum do not move around in my belly like they are supposed to. What I mean by this is she should be able to find my bladder and gently move it from side to side (same thing with other organs). Instead, my organs are stationary and don't want to budge...she has known I've had abdominal issues but couldn't quite figure out what was causing it, and now we know. My connective tissue in my abdominal and pelvic area has something wrong with it, which explains why the organs are stuck in place and also the tenseness of my pelvic floor.

In the small amount of time we had at my appointment, she did a few external "hold and release" techniques on my belly to try and get my organs to move freely. Amazingly enough, when she released her hands I felt like I could breathe. I can't even describe the difference that I felt. I never really notice having shortness of breath/difficulty breathing, but I felt like my belly was moving out so much farther when I took a deep breath after she did her new techniques. I could also actually feel my organs kind of moving around in there when I breathed. It felt really good to breathe like that!

So now my physical therapist wants me to come in for 1 hour sessions so she can get to everything she wants to try on me after learning new techniques. I have a little bit of hope now, especially after feeling the difference in my belly after she tried one of the new hold and release techniques on me. I do tend to carry my stress in my abdominal and pelvic areas so hopefully we're on the right track.

As far as internal goes, it is still extremely painful to have internal therapy, but I know it is for my best interest to do continue doing it. I have laid off the dilators recently because the burning has been very intense (goodbye lovely period, I'm glad you're over with now!).

I will keep you ladies updated; I hope these new techniques may be an answer for us! cheers

I'm really trying to stay positive, the ups and downs are so extreme that the downs dominate my feelings most of the time, unfortunately.

Also, have any of you ladies heard about or had the surgery called a vestibulectomy? My physical therapist got to watch one on video during her class and told me more about it. She said it would be an option to me, but that we need to figure out all of my muscular dysfunction first. The vestibulectomy would supposedly alleviate the burning/rawness upon insertion, but I would still have pelvic floor dysfunction as of right now.

Ultimately I'm hoping that it will all go away forever and that none of us have to deal with this anymore! Wouldn't that just be great! rabbit

[Sara]

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Join date: 2011-01-01

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Re: Recent findings during my physical therapy

Post  Sarah001 on Sun Feb 06, 2011 1:26 pm

Connective tissue can get stuck, fasica surrounds everything in the body so if it gets stuck somewhere it affects alot of places. Fascia also has lots of nerves in it and causes burning if it's problematic. My connective tissue problem is the opposite to yours and too loose but it does play a part in anything musculoskeletal. It's good to hear it helped your breathing, breathing and the pelvic floor are closely related as the pelvc floor should move when you breathe. I tend to grip with my abs and restrict my breathing which obviously means my pelvic floor doesn't get the movement it needs and just stays rigid. Hopefully you'll make alot of progress!

Sarah001

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Location: UK

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