Looks like link didnt come out lol - http://vulvodyniasupport.forumotion.net
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(Posted on 2009-12-22 23:13:00 by )
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Support Forum for women living with Vulvodynia (a painful condtion of the Vulva)
Please join for support and community, you are not alone
(Posted on 2009-12-22 23:11:00 by ) -
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(Posted on 2009-07-09 04:28:00 by ) -
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(Posted on 2009-06-09 05:53:00 by ) -
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(Posted on 2009-06-09 05:53:00 by ) -
I am at my wits end and so worried for my sister who has VIN111!! I have recently moved to America (from Ireland), my sister lives in Ireland and is currently in hospital in Ireland for the past 4weeks!! She is 31, diagnosed with VIN111 1year ago (but has had these symptoms for 9 years, was treated for thrush all this time!!) She is in SOO much pain with this VIN111 and her Dr feels that she should not have this much pain with the VIN111 and is bein very unsympathetic.......!! She complains of severe vaginal/vulval pain accompanied with severe itching of the afffected areas.
Her Dr has given her 2 options for treatment; Option 1 is a topical cream-"Aldara" but she tried it for a few days at home (prior to admission) and she found the pain even more unbearable after the application of the cream thus why she had to go into hospital for pain management. Option 2 is for her to have skinning of the vulva or wide surgical excision of the vulval/vaginal area (OMG!). After these options the Dr proceeded to tell her that neither of these treatments are guaranteed to clear the VIN111 or to prevent it from turning into CANCER in the future and that he wants to discharge her from his care unless she selects one of the two options of treatment!! So she's now having a third opinion in a different hospital as to what other treatments might be available and to find out if there is an underlying problem as her pain in the affected area is excruiating (even without the application of the topical cream!!). She has also had a constant period for the 4weeks she's been in hospital-Drs fail to think this is a problem or related to the VIN111 or why her pain is so unusually severe. She's had erratic menstrual cycles for many years now with no reason found for it!! She suffers from frequent insomnia with night sweats (night sweats were investigated but no medical reason was found). She was diagnosed with Discoid Lupus 2 years ago (not SLE) and has a 9month old beautiful, healthy boy!
> Because my sister's Dr has questioned her pain levels which is such an insult but my sister is wondering if anyone has experienced this excruicating pain without application of the cream-she knows that applying the cream is very painful but she has so much pain from the VIN 111 even without the application of the cream!!! I am emailing on behalf of my sister as she is in hospital and doesn't have internet access! I apologise for the extreme detail but I am hoping that someone may have heard or experienced something similar (not that I would want anyone to go through what my lovely sister is going through!) and may have suggestions/advice etc............ Thanks for reading this email and I truely wish all of you my very best wishes.
(Posted on 2009-05-17 04:40:00 by ) -
Hello. i thought i was the only one who has got vulvadynia! ive been suffering for just over a year now and it has caused me to become depressed anxious and cut off from the world. i kept running backwards and forwards to the docs and after my mental health went down hill with the burning all the time they finally took notice!
i have to say i feel better now, but still get into a mess when i feel the burning! but im sure this will go!
(Posted on 2009-05-06 13:52:00 by ) -
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(Posted on 2009-03-19 05:41:00 by ) -
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(Posted on 2009-03-19 05:41:00 by ) -
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(Posted on 2009-03-18 08:01:00 by ) -
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(Posted on 2009-03-09 16:39:00 by ) -
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(Posted on 2009-03-07 10:25:00 by ) -
Thank you Fabia for all you have done over the years. You supported me when I had my clitoris vulva and lymph glands removed due to cancer 15 years ago and we have shared much. You deserve a medal.
Every success and good health
Love Kath (from Down Under Australia)
(Posted on 2009-01-31 02:20:00 by ) -
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(Posted on 2008-12-15 09:12:00 by ) -
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(Posted on 2008-09-18 07:34:00 by ) -
My story is a bit less dire than most, I havent got lichen and i havent got vestibulitis, I have an dysesthetic vulvodynia. It took 9 doctors and many more theories than 9 before i finally found the right diagnosis: Dr. Nunns ON THE NET. Once I had a name for it I could manage things. The burning is still pretty much always there, but the tyrcyclic antidepressants (10mgs. daily only) help a bit I think and the great healer is water, Bidet Rules. My way of looking at my particular problem is this:- it came - it can go. I send you all my very best wishes and your husbands, fortunately for me there is no gentleman in the case - I cannot Thikn how you cope. Bless you. Louie
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(Posted on 2008-07-26 14:59:00 by ) -
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(Posted on 2008-05-31 01:22:00 by ) -
I have never had a diagnosis why I have an insufferably itchy vulva even though I have had a biopsy (seen both a gynacologist & dermotologist), prescribed dermovate & 3 other steroid treatments and had HVP as a teenager and have also been treated for CIN 3... I find trying to get on with daily life due to constant itching unbearable.. my sex life has gone from very healthy to me suffering in silence in the last 3 years (since the itching became severe).. I am only 36 years old and have recently given birth to my 4th Child, 9 weeks ago. Thanks to finding this site I am once again going back to my GP and asking for further investigations to be carried out. After reading up via the links I feel I may suffer from lichen sclerosus but now I am more aware will use the treatments correctly and due to being a higher risk for VIN will start to self examine (something I have been to ashamed to do before).This condition has left me with a crippling low self esteem and feeling totally unfeminine but knowing I'm not alone is a great comfort.
(Posted on 2008-05-25 22:48:00 by ) -
Hi my mum has just been told she has lichen and i would like to know more about it . my mum is very upset so i would like to help her thank you Heather weight
(Posted on 2008-05-09 14:42:00 by ) -
Hi,For years I was treated for thrush then I was sent to an STD clinic no one had a clue what was wrong with me,ten years later my bowel collapsed I saw a different doctor who took a biopsy of vaginal skin final diagnosed with Lichen Sclerosus sadly with no help advice or treatment until now I have not been able to have marital relations with my husband for three years because of shrinkage, thankfully I have a loving understanding husband.I purchased the vaginal dilators today I will let you know how I get on with them. I also suffer from Scleroderma and Rhuematoid arthritis. How do you cope with having Lichen Sclerosis? Does anyone have any helful tips or advice to offer?
I would be most grateful.
Kind Regards to all Edith
(Posted on 2008-05-01 14:55:00 by ) -
Most informative and helpful.Thanks!
(Posted on 2008-03-21 11:50:00 by )
Vulval Health Awareness Campaign
Registered Charity No: 1117613
Telephone Helpline (+44) 07765 947599
The World's first vulval health awareness campaign
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