Has anyone had Paget's disease of the vulva?

@biancasmythe Thank you for your honesty. And I'm thankful to hear if I'm interpreting correctly, anger and frustration that no one really understands EMPD vulva and no Moh surgeon has experience with surgery on the vulva. I asked the dermatologist who might have done the massive surgery taking skin from my thighs - what if he nicked my bladder or urethra. He said, though he as really nice, I could have a bag for urine. (probably not his terminology). I'm 77 1/2. I am angry and frustrated, and afraid that taking the route of no surgery, at least for now, is going to leave me without support medically. It's all so unknown. No surgery, I've done 10+ years unknowingly. The itch and burn is sometimes horrible, but not unbearable. Will it turn to cancer? Will it go from non-invasive to invasive? But with surgery, how long before it returned and the rest of my life going from surgery to surgery and not living in some ways. It's one day at a time and living as fully as I can.

I am on Aldara for 2 reasons only: one, my son is in his final year of school and I have decided to only tell him about my condition after his final exams on November 8. The second reason is indeed because no one here really understands EMPD vulva and no Moh’s surgeon has experience with surgery on the vulva. I would be most grateful to be put in touch with a team as I am 56 and in otherwise good health

I’m very interested to hear how you make out with Aldara. I have been hearing that surgery is the best option, especially for those that are relatively young and healthy, because it has the best efficacy when it comes to recurrence. (The Pagets doesn’t come back as easily, supposedly.) but who knows? So you are on Aldara because no one where you are does Mohs for vulva? If you want to come to Bay Area, I can link you up with a great Mohs team!

I went to myempd.com. Then I found the support group and answered their questions there. I had no issues getting in. If the link is broken, let the one who gave it to you know.
It continues to be a great place, and I continue to do well.
Blessings!

Yes! After reading comments on the my empd facebook page, I realize that because of finding them, my results were way better than many. I returned for my post op on Feb. 13. He declared me cancer free. I return to see him in 4 months to see how I am doing, and then in 6. I do not mind going often as if it comes back ( and I feel like it won’t, but hearing the stories of others, I won’t be shocked), I can get him to get it. Pain is absolutely gone and has been. Initially, it stung when I peed, but he gave me Mupirisin ointment, and that did help. I did have 4 stages of Moh’s before he got all clear margins. He repaied with an artificial graft, and it hardly looks any different. I can answer yes I am able to be sexually active with my husband. The only difference was my nerves (think new bride), and things had tightened up. But no pain!
This was primary and non-invasive, so I must have gotten it early. But when I think of almost having a partial vulvectomy with no knowledge of the margins, I cringe. I almost went there! The Moh’s was not unbearable. They only used lidocaine & epinephrine, and I was wide awake, nervous, and running my mouth the entire time. I would do it again rather than general. Dr. Dany explained everything. Hope this helps!

My doctor is a very young man, but he is brilliant. The people working with him are wonderful, and I have added him to the “my empd” list of doctors. I highly recommend him! The link below is for his info.
https://www.vcuhealth.org/find-a-provider/mohammed-dany

@biancasmythe, how are you doing? How did the consultation go? Do you have a treatment plan?

I was diagnosed with primary Pagets on 10 April this year and will meet the gynae oncology team on 29 April. Don't know what to expect from the first consultation, hoping for some real empathy and understanding of this disease as not much seems to have changed in the 100 years since it was first coined. I am also confused as to whether this is a dermatological or gynecological area of concern. Is there such a thing as a second opinion re treatment?