Vulvar intraepthelial neoplasia VIN3 treatment query
Posted , 4 users are following.
I am an unfortunate case. I have been struggling with HPV 16 for 8 years now. I am now 35. I had CIN2 and had cold coagulation, then it returned and I had to have part of my cervix removed.
In 2015 I started having problems with itching on vulva area, I had one small patch. I was fobbed off for years and told it was lichen sclerosus even though I was young and told to use the most potent topical steroids (which is like fuel for HPV)! In 2019 I finally got biopsies done after demanding and by this point the patch has spread all over the vulva, on the anal region etc. I was called to come in and was told I had VIN3 and AIN3. I could not believe it. I had to have surgery for the AIN3 and mapping biopsies. The doctors involved were not happy at my fightback attitude after I had been misdiagnosed. I had chronic thinnning and changes to the skin due to the chronic topical steroid use. I put complaints in and this made their attitude towards me even worse. My healthboard is well known for covering up, protecting each other and scandals.
I was advised to go on topical treatment. I asked about laser and was told it would be too painful and as there is such a large area needing treated it could not be done. I was then put on imiquimod treatment which is an immunomodulator. As I was having to put it over such a large area I was experiencing severe systemic effects. I had massive reactions in the skin below and needed catheterised, had infections in the skin and without exaggerating it was one of the worse things I have ever been through. Some of my symptoms improved and the skin looked a bit better. I got maybe 4 months of feeling better down there then everything would just flare up and come back with a vengeance. It was at this point the doctor said she felt I was likely immunocompromised as I have had problems with infections my whole life.
Since then I have been on 2 round of imiquimod again with the severe effects and now the doctor is recommending 5 flurouracil (topical chemotherapy) with calcipotriol (topical vitamin D) all of this is off license.
I am at the stage where I am actually thinking about a vulvectomy as I cannot handle this anymore. It is basically go on treatment for months, get a few months break, go back on treatment for a few months get a few months break. Each time the VIN and AIN come back. My body can clearly not get rid of this!
This has stopped me from having a family as these treatments are toxic to pregnancy and babies. You have to wait up to 1 year with some of them. I have autoimmune arthritis and psoriasis and these treatments make my autoimmune disease go out of control. There is total lack of compassion from the doctors and they just say "get on with it or get invasive cancer". It is so so difficult. Sometimes I sit and think is this really happening to me and how do these people get away with this. There is no clear treatment plan or outcome and nobody can really help me.
Can anyone recommend anything? complaints dont work and i dont have enough money to go outwith the nhs and go private. 😦
0 likes, 3 replies
helen16053 RISGIRL
Posted
Hi i am on the same boat with you.. The only differnce is that before all that starting, 15 years ago i also had the HPV Vaccine...
I have AIN3, VIN3 did aldara nothing helped, how did you handle this?
shioban63152 RISGIRL
Posted
i can relate. also fobbed off and neglected by docs. i am so sorry for the situation you are going through. you posted some time ago. may i ask, how are you doing now? i had vin 1 hpv+, treated by laser. it reoccurred and then treated with cream. afterwards i developed lichen sclerosus. itchy for 3 years now. no solution apparently...
emma30626 RISGIRL
Posted
i was fobbed off at my last check up appt in feb this year( following excision surgery in 2019) and was told my itching was just atrophied tissue and to use emollient cream and topical oestrogen when needed. Had my next follow up check on the thurs just gone (11th May 2023) with a different consultant and asked her to look at the same area which was still itching despite the sue of the recommended creams.She looked and did say it looked red and she would put the acetic acid on to check and it showed up white patches. She took 3 biopsies but did say at the time that it looks the same as before and that surgery was probably going to be the next step the same as 2019. I still wonder if it was detected 3 months ago by the previous consultant, that i wouldve been able to try imiquimod instead of straight to surgery? I understand that they are very busy people but wonder if the fact there was students in the exam room distracted the consultant from doing a proper exam?