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 so I am emailing on behalf of my sister as she doesn't have internet access in hospital!! She is 31, diagnosed with VIN111 1year ago (but has had these symptoms for 9 years, was treated for thrush etc 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 severe (which is unusual according to them!). She's had erratic menstrual cycles for many years now with no reason found for it despite lots of investigations!! She suffers from frequent insomnia with night sweats (night sweats were investigated but no medical reason was found again). 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 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.