Hi, am new to this forum and am really pleased to find a group that actually discuss's pre cancer scenarios also.
I am a 46 year old woman, and for the last 5 years have suffered with AIN 3, VIN 3, have had areas removed from my bottom, involving plastic surgery, and have had a vulvectamy last July with plastic surgery, where they tried to save my clitorisis at least, but had to have that removed in December. Have had 9 surgeries in last year for biopsies and excisions. Some of the biopsies have shown signs of micro invasion.
In February this year after healing from the surgery in December, I went and had my check up with the consultant, and actually my vulva felt good enough that they could do my smear with out me having to have aneasethic. So the VIN and AIN was looking good.
Had smear results to say moderate changes.
Had a LLETZ on 3rd April, as well as biopsies. The VIN was back and also now in my vaginal wall also. MyLLETZ showed there was no cancer on the cervix however there was HPV invasion.
I saw my gynae oncologist on the 17th May - she has now said that they cannot rule out a lesion in the canal and that I need to have a hysterectomy. Also whilst that is happening she will do more biospsies of the VIN, AIN and VaIN. Also she has told me that it is extremely unlikely that I will ever have a normal smear test reading.
I guess what I am trying to find out or feel a little more reassured about is whether I am making the right decision. If I am never going to have a clear smear am I having more sugery and putting myself through the change as ovaries going for no benefit? Is my history indicating that there could be serious issues going forward? How definate would she need to be that there is more in cervical canal than indicates to put me through a hysterectomy? I have had so much done over the years, never to be clear of it, every time I have biopsies I worry whether I am going to have cancerous cells, as have been told very clearly that the VIN looks like it will turn cancerous at some point by the consultant in Exeter.
This has had a huge impact on my life, I am depresaed, it has impacted me losing a job I loved because of the amount of time I had to have off for surgeries. I do not feel like a woman anymore, my sex life with my husband has disappeared, not just because of me now, he had a radical prostectamy in February for prostate cancer too. I just want to feel normal....
Any advise or words of encouragement would be greatlyu appreciated.