Has anyone had Paget's disease of the vulva?

Just an update on my Paget's journey: have had 7 surgeries since 2013, last being December 2024. Obviously it continues to return. Always difficult post-surgery but willing to continue as long as Paget's not invasive. Have tried Imiquimod, even tried using lidocaine ointment to quell the burning while using imiquimod, but still found to be too uncomfortable, so I stopped. However, I understand some folks have had great success with it, so definitely give it a try.
As for soothing regular itching, I have found success with silver sulfadiazine cream. Seems to calm the skin & relieve itching for several days.
After all these years, I have lost hope that Paget's will be gone. I have even lost hope that anyone is even trying to find the source of Paget's or a cure. Just hoping I can cope while my husband, with Parkinson's, is alive. I wish you all the best & am grateful for this forum. I have NEVER met a single human in person with Paget's.

@susanpagets
Hi I posted in the forum about getting some info on Imiquimod cream. I also have pagets and had surgery and it came back in few months so did laser treatment and it came back again. Now my dr wants me to try the Imiquimod.
I don’t know anyone who’s used it so wondering what to expect. Any advice would be appreciated thx

Ladies
I’ve been trying to find things to manage the itching, pain due to pagets. I’ve been taking Trunature probiotics and it has been really helpful. I also make sure I drink lots of water. The days when i don’t, the itching and burning is unbearable. I also tried coconut oil, olive oil and other lubricants but Vaseline works best for me.
Good luck on this unpaved path that we are all on.

I am about to start Imiquimod next week. I’ve been postponing it because I am so scared of the pain. Pls share advice on how to apply, what to expect, and tip to manage the pain and side effects. Thank you.

I have Paget's Disease of the Vulva and have commented on this forum many times. I have had one surgery and the last occurence the Dr. suggested
Imiquimod. They were not sure that I could tolerate it because of the burning but I decided it could not be much worse than what I was going through with the burning and itching that I was experiencing on a daily basis. Much to my surprise, the Imiquimod helped and I have less burning and itching than I had before.

Please let me know if I can help in any way. You are correct, there is not a lot of information or support for this disease.

Susan

I also have had success with Imiquimod / Aldara
First having excision without clear margins Pagets came back almost immediately
I changed Drs as the UW Dr said there was no other treatment than excision which was going to leave me mangled and completely disfigured. Found a new Dr at OHSU in Portland Oregon
Its a haul but closer than Minnesota or New York.
I have used Aldara for 3 months followed instructions to the letter
It had its moments I was afraid to think it could work.
Another spot developed during treatment. Its a head banger! Went for the checkup had 2 biopsies Dr didnt sound very optimistic we set up a phone appointment for 2 weeks.
I received a call from the Dr 5 days later that both biopsies were clear of Pagets!
It will likely come back but I would rather use the cream than have surgery or loose
my clitoris.
I am 60. Keep searching for the right Dr dont give up

LRCG

I'm glad that the article gave you more information about Paget's, @ameliae. Are you going to seek another opinion at a hospital in the U.S. or elsewhere?

I hadn't heard of secondary Paget's til reading above. I wonder if that is what I have, as the gyno-oncologist said it seems to be related to having had breast cancer. And now metastatic breast cancer after 20 years. Secondary is non-invasive?? At any rate, he says mine isn't invasive or aggressive. So, no surgery or imiquimod. Thank God, as I have enough dealing with the cancer again.

Thank you for your guidance. I will definitely search for Mayo branches and contact them. I had all the internal tests done and there was no evidence of internal problems in the bowels or uterus.
I need to find the right clinic before my test results are ready in two weeks. Considering the rapid progress of the disease, I welcome any suggestions for help.

Thank you for your reply. I first noticed slight changes in the vulvar area when I was 28 years old. It took four and a half years for the correct and original diagnosis about the disease. Using topical medication did not work. At the age of thirty-three, the first two-centimeter deep surgery was performed to completely drain the edges. At the age of thirty-five, the surgery was light and only on the skin. From two years ago until now, there has been a slight discoloration in the same area, I had a biopsy last week and I am waiting for the results and I have not made a decision yet. Given that I am younger, the progression of the disease is worrying. In Iran, there was almost no one except me, or I did not find that he had such a disease, or even that doctors had performed surgery. For this reason, I underwent surgery by the medical team in a private hospital. But I want to stop the progress process and go to a country that is familiar with this surgery as soon as possible, because the disease process in me is faster than two or three years.
Pleae help me about it