Hey everyone ! For a rare cancer, there sure seem to be several victims of it. Mine was found last july. I had been previously diagnosed with lichen sclerosis. I had. Partial radical vulvectomy last october with inguinal lymph dissection. I was in a lot of pain. Dispute doing everything for cleansing I did have infection to deal with. My margins came back negative, as well as my lymph nodes. But in Feb on a follow up appointment they said that they wanted to repeat biopsies an ablation on perineum.. I had that done last week in day surgery. All biopsies came back neg. They told me they would see me in 6 months. I still have pain I. Upper thighs and swelling, am assuming this Is from lymph removal. I also have some pain with labia mineral that was left from surgery. Seems to get pinched. I am now also waiting for inguinal hernias to be repaired. Found those in late January . Has anyone else had any if these after issues. I am at the end of my rope. I used to be super active with running and training but have been maid up for six months and waiting for more surgery. Incredibly frustrated.
Hi and welcome to the online community
I'm sorry to hear that you're still in a lot of pain after you've had surgery and biopsies. Have you spoken to your CNS about this as I'm sure your team would want to get this sorted? I can imagine how frustrating and upsetting this must be for you especially as it's stopping you from being able to be as active as you'd like.
If your CNS hasn't been able to help, perhaps you could post your question in our ask a nurse section and one of the specialist cancer nurses will aim to respond within two working days.
I hope you're able to get this sorted quickly.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
