I had successful surgery in 2021 for vulva squamous cell carcinoma and since then, have been diagnosed with high risk severe dyskarosis CIN3. I have had multiple LLETZ procedures and diathermy but the abnormal cells remain. Years of this procedure and many many biopsies have left minimal cervix tissue so my consultant suggested a hysterectomy as a last option. She wanted me to be fully optimised for surgery and advised me to loose weight (so I lost 5 stone) and arranged an urgent MRI with contrast. That was over a year ago…. and I’m still waiting to hear about the hysterectomy. 

Each appointment I have, they take biopsies and say they’ll discuss in MDT meetings… I’ve been told that at least 4 times. The margins are clear but the smear results are always high risk abnormal cells… which is odd because it’s all from the cervix right?

I am due another appointment mid April to discuss the most recent MDT outcome but other than the hysterectomy I’m not sure what else they can do. I need to push to get the surgery but not sure what I can do or say to them to put it in place. My original consultant that suggested the op has gone, the colposcopy nurse has left, they’ve a new computer system so only the most recent records show on it. It’s enough to push me over the edge!  Has anyone else been fighting this long for help? What can I do to get this sorted out?