Hi all. Got told this week that I have EMPD on my vulva. CT scan to be arranged to check if it's spread. I've had a raised patch for 2 years, didn't respond to creams, but wasn't really causing any issues and in the meantime has dermoid cyst on ovary and total abdominal hysterectomy. The dermoid turned out not to be cancerous, but it looks like we were more concerned about the wrong thing, but didn't know that at the time.Worried about what ttheCT scan will show up as if it's spread, from what I've been reading online, then it doesn't sound like treatment is very effective. Initial plan is wide excision (on the assumption it hasn't spread elsewhere).
Hi CalamityJane02edb2 and welcome to the vulva cancer forum.
I’m sorry to read of your diagnosis, and appreciate that it’s a stressful time waiting for the CT scan and a treatment plan.
It may be that there is limited experience in the group of this rare condition, which is why you unfortunately haven’t received a reply yet, but it has been discussed here before. I’ll tag a couple of ladies who have experience of EMPD and hope that they’ll see your post and be able to reply to you.
You can use the search function (magnifying glass at the top left of the page) to search for other posts. I typed in “EMPD vulva” into this search box and it brought up some results. If you click on this link I’ve made it takes you to a discussion thread which might help.
It can be difficult to connect with others when your condition is rare, but if you’d like to chat to one of the nurses you can either ring the support line (number is in my signature below) or ask a question here
I hope you’ll keep in touch and let us know how you get on.
Sarah xx
