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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 …

Comments: 5

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


Hallo, I am Tanya, I have vulvodynia..

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Hallo, I am Tanya, I have vulvodynia..

Post  tannya on Tue May 31, 2011 5:13 pm

My name is Tanya, I am from Bulgaria, now I am in London, UK. I have vulvodynia from 11 months. I was diagnosed 2 months ago and I am taking amitriptyline 10 mg In the beggining I felt better, but right now I am in very bad pain Crying or Very sad

Nice to meet you!

tannya

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Re: Hallo, I am Tanya, I have vulvodynia..

Post  Sarah001 on Tue May 31, 2011 8:57 pm

Hi Tanya and welcome. If the Ami helped in the beginning maybe you should try upping the dose? I'm on 50mg but it never helped my V, I actually got prescribed it for Fibromyalgia. I'm also on 300mg of Pregabalin a day and that's not proving to be a great success either! Anyway, have a good look round and see what you can find here.

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Re: Hallo, I am Tanya, I have vulvodynia..

Post  tannya on Tue May 31, 2011 10:10 pm

Sarah001 thank you for your answer! I will try with 20 mg daily..
Today was real nightmare Neutral

Wish you luck sunny

tannya

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Re: Hallo, I am Tanya, I have vulvodynia..

Post  Sarah001 on Wed Jun 01, 2011 8:14 pm

Make sure you run your increased dose by your doctor so they know what you're doing, some women only need a tiny dose and others a bit more and others aren't helped by Ami at all but only trying it out will let you know. You can always add anti-convulsants if you need to.

Sarah001

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Re: Hallo, I am Tanya, I have vulvodynia..

Post  tannya on Wed Jun 01, 2011 8:46 pm

Thanks Sarah001 !

I took 2 pills last night, and today I feel better. My Dr said to take the second pill if I neet it. I will try 20mg Ami for 2-3 days, and than again just 10 mg.

Thanks once again!

tannya

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Re: Hallo, I am Tanya, I have vulvodynia..

Post  jules on Sun Jun 05, 2011 8:49 pm

Hi Tanya, i hope the increase helps. i haven't been on Ami for this. I started off w/ Gabepentin (anti-convulsant), then added Lyrica (also known as preg.) and now Cymbalta. I take all three. my nurse just increased my Cymbalta. I also take Percocet (oxycodone w/ tylenol) if your pain continues, you may want to get a referral to a pain clinic. they should be able to help you manage the pain. so sorry you had to join our "club." there are a lot of knowledgeable ladies here. hope we can help. i haven't visited this site for a couple of months. I hope i can visit again soon. i'm off to get my nails done. we need to remember to pamper ourselves too. OH...i recommend physical therapy too. i do that and will soon see an acupuncturist. surgery is in my future as well. i am going to have surgery to have wires implanted in my spine w/ a battery put under my skin. it's called a neurostimulator. i will have a remote control which will control vibrations to the nerves and will hopefully interrupt the pain signal to the brain. i have no idea if it will help. i will have a one week trial before they implant the battery in my upper buttocks. this is kind of a last resort. also, if you have a hard time sitting, i recommend a foam donut (cushion). i can't sit w/out one. try it all! good luck!

jules

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Re: Hallo, I am Tanya, I have vulvodynia..

Post  Sebby (Admin) on Thu Jun 09, 2011 8:39 pm


Welcome Tanya, I am too from London.

Im not sure what part of London you are from but I do recommend Dr Karen Gibbons at Whipps Cross Hosptial. She is a Vulvar Dermotologist but also knows a lot about this condition as a whole. I was pleased to be examined and have skin disease ruled out and she gave great all round advice.

I recently had to up my dose of Pregabalin (anticonvulsant) and have found it helped a great deal.

I hope the increased Ami does work for you


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