Has anyone had Paget's disease of the vulva?

Any advice about how to access the empd Facebook page? I contacted the hosts and the link they sent me doesn’t work.

So Glad you are doing well!

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!

Thank you. Yes, they sent me a new link and I got in.

Yes, I do have EMPD of the vulva, diagnosed almost 3 years ago. I was supposed to have surgery on my clitoris the first outbreak, but was asked to try Imiquimod cream instead. I have had 10 biopsies in almost three years and 3 treatments. Although quite uncomfortable the first time around for 6 weeks, the two times after that were a bit easier. I have another visual with my OB/GYN this coming August, we will see if I have another outbreak. My very best to you and will keep you in my prayers.

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

@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 reading your post and also post from of Nomikins. It is my feeling as well that the treatments for EMPD have not been proven, and that alone is scary. As I mentioned in my profile, when I have a recurrence of Paget of the vulva, I am treated with Imiquimod. Initially almost 3 years ago, I was scheduled to have my clitoris cut off (I was 65 at the time) but I was asked if I wanted to try Imiquimod instead because it seemed then to have worked on others. So I said yes. The bothersome side effects are now being managed and don't suffer as much. However, for two months, I have low energy and take naps often. My oncologist keeps telling me that EMPD of the vulva is slow at developing and as long as I get visuals of the area, I am staying on the top of the evolution which, untreated, can develop into cancer. So basically I don't know what is going to happen to me in the long run. Best regards to you

Thank you. I'm so glad to hear others are uncertain. As horrible as this disease is, it helps to not be alone in the uncertainty. Which also gives me courage to stand in my own centre.

I have not added to recent discussions because I felt I had nothing new to add, but I wanted to reassure you that you are definitely not alone in your uncertainty. After nearly 11 years and 6 surgeries, Paget's continues to be a cloud hanging over my head. I recently tried another short round of Aldara, but stopped because of side effects, so my next option will be another surgery. My dr and I agreed to wait awhile because my last surgery was just a year ago. My research shows that doctors have found nothing to eliminate the disease completely because they cannot determine the cause. In exploring MOHS, the research I found states that recurrence may take longer, perhaps as much as 3 years, but the Paget's will return eventually. If someone can prove other long term results, I would welcome hearing about it.
In the meantime, I have found using Silvadene cream or Silver Sulfadiazine cream, an Rx from Ascend, to be very soothing for the pain and itching.
I also understand that this disease can become invasive & cause cancer in other organs, which is why I have tolerated the surgeries.
At nearly 79yr, I try to welcome any day I remain functional & can enjoy family & friends. I know my time on this planet is limited no matter what. I wish the same for anyone reading this message.

Thank you for sharing: all your observations are valuable!!! I will note the name of the RX for future use... trials and errors when it comes to soothing the skin when having an outbreak. The third time was the charm! hardly any itching or burning. I will look up the protocol as I don't remember it and that was like 3 or 4 months ago, and will get back to you. I have a protocol for numbing the very painful biopsies after 10 of them... Oxycodon: just one pill 1 hr before biopsy and lidocaine 5% both RX. Then the doctor comes in and gives about three lidocaine shots and I don't feel a thing after that... Basically as we know so far is that we don't know the outcome of this strange cancer.. May we all be blessed for a good outcome.