Hello everyone,
I am 64 and was diagnosed with EMPD of the Vulva in October 2024 and had my first surgery in January this year. I was interested to read that many EMPD patients have been treated with Immiquod and similar rather than surgery. Im a Brit, but I live in Portugal and want to make sure I am on the right path in terms of staying on top of this disease and would love to know who is your first point of contact ie, who monitors your progress, is it your GP, or a dermatologist, gynaecologist or an oncologist? Have you been referred to a teaching/ university hospital or do you attend your local hospital? There is so little information here and all the medical professionals say they have only seen it in books.
Thank you so much for reading this.
Hello Ericeira
Welcome to the Vulva group and the online community.
I am sorry to hear of your EMPD of your vulva. I hope that you are recovering ok from your surgery in January.
My cancer was endometrial but in my hospital it is the same dept that deals with all the gynaecological cancers.
My care was under my local hospital which has its own cancer centre. I was dealt with by the gynaeoncology dept. I had a consultant who was looking after me for the surgery, another consultant who dealt with the chemo and another one that dealt with the radiotherapy. Throughout all my diagnosis, treatment and recovery I have had the same team on Cancer nurse specialists. It is my CNS who did my 12 weekly check ups for 2 years. I am now on patient led follow up and I would contact my CNS if needed.
All reports etc go to my GP but they have not really been involved with my care other than providing some prescriptions during chemo.
I wish you well for your continued recovery. If there is anything else you need, please do ask.
Jane
Hi Ericeira
I’d like to add my welcome to Jane’s, and link you to this thread which might be helpful for you to read
I’ll tag in platespinner to my reply here, as I’m aware she has been dealing with this for a long time so hopefully she’ll see this and be able to respond.
I had a gynaecological cancer, and was dealt with at a major university/teaching hospital and a specialist cancer hospital in Sheffield. I only had one consultant initially who dealt with chemotherapy and radiotherapy and then was referred to a different consultant oncologist for surgery, so my situation was different to Jane’s. My GP has never been involved in any aspect of my care since my original cancer diagnosis but I had 2 cancer nurse specialists involved in my chemoradiation and another involved in my post surgery follow up who were very supportive.
I had major surgery which involved removing my vagina among many other things, so I can appreciate how tough it is dealing with treatment and surgery in this area and finding others who have been through similar.
I hope you are recovering from your surgery and doing well, and that others who have had EMPD will join in to this conversation. Please feel free to have a look through the group and reply to any of the existing threads you may find helpful.
Sarah xx
