Has anyone had Paget's disease of the vulva?

I have not joined the discussion for awhile because I felt I had no more to contribute, but my heart went out to you when I read about your recent Paget's surgery, so here goes. To reiterate, I have had 7 Paget's surgeries since 2013, and I am headed for my 8th. The first was the worst & the most extensive. Good news: I have recovered from them all! In addition, none have been invasive. So I keep plodding along because there is no known cure and no known explanation as to why the Paget's continues to recur.
For the recovery period, always wear skirts (pretend it's a fashion trend) & mostly no underwear. No PJ's; only nightgowns. Use the "Cleopatra" model of sitting, laying back with legs up & open as much as possible. You want light & air & as little irritation as possible. Squirting water on the wound in the toilet & in the shower & drying with a gentle hair dryer better than touching or soaking. Several of surgeries became infected. Not surprising considering the location. Notify dr as soon as you suspect that or even go to an ER. You want to begin an antibiotic ASAP. In addition to healing yourself, you will be educating the ER staff who have never heard of Paget's or seen what a vulvectomy is like. Sorry for the flip remarks, but a sense of humor is required to cope with this miserable & rare disease. Also do not feel embarrassed. The vulva is just a body part. People used to say "breast cancer" in hushed tones & now they have parades & wear pink. I would be thrilled for a parade for Paget's & better education in the medical field & of course, more research.
Good luck. Hopefully, when you are healed, you will have at least a good two years free & possibly a lot longer.
Also, as a personal preference, I would only use a female dr. who can relate to the extremely sensitive nature of having a vulva!
Hopefully, you will

@chaka67 This is my first entry on the Mayo site and have spent 2 days going thru the very helpful information from others with the same problem. I live in Australia and know only one other person here with the same cancer.
My initial thought of something wrong started when I lost weight, around 8 kilos (18lbs) and 18 months on I was diagnosed with extramammary pagent's disease of the vulva last August 2025. I had had the itch for about 9 months and thought it was thrush. After seeing my doctor and having a biopsy do it came back with the above results and stating that there maybe a primary cancer elsewhere. I had a PET scan which came up with a suspicious thyroid nodule (of which I have many) but this was cleared after another biopsy. Doctors gave me the information about surgery but I opted for the Aldara cream. The doctor emphasized that others had found the cream intolerable.
I spent 7 weeks initially using 3 times a week and stopped for a week. Managed another 3 weeks straight, stopped again for a week and managed another 10 days with the cream. Completed all up nearly 12 weeks of the 16 weeks advised.
I have now been 2 months clear and keep a weekly check of any outbreak.
To help me stop worrying whether there is cancer elsewhere in my body I am booking a full body MRI scan.
Hopefully my story will help others make informed decisions.

No list - I’m not real happy with aftercare in the hospital. I’m using cold packs, antibiotic ointment and lidocaine spray. I ordered these supplies from Amazon.

@oktave20 I have cancer elsewhere in my body - I have had leukemia and lymphoma for 5+ years.

Oh, sorry to hear that. This is my first bout of cancer. Nothing compared to those that I have read on this site.
Hope you are not in too much pain.

@bouf1948 Hi there, I only found this site a week ago and see most of the women have had surgery without doing the cream first. I live in Australia and was diagnosed with Pagets last August but decided to do the cream first. I am clear as of two months ago. I did 7 weeks (3 nights, Monday, Tuesday and Friday) with the cream then stopped for 1 week did another 3 weeks then again stopped for a week then 10 days and now 2 months clear.
Fingers crossed it doesn't return any time soon.
If you decide to use the cream make sure it is only a thin layer of cream.

I wasn’t given the option of using the cream first, I was told we’d use the cream after. This is the worst surgery I’ve ever had in regard to pain. How painful is the cream? It’s been a week since surgery for me, and the pain is still unimaginable. I may never do this again. I’m glad yours is gone, and I pray it never returns.

@bouf1948 The doctor did say that I should do the surgery then the cream because she said the cream was so painful. I gave myself 14 days to think about this and decided that if the cream was unbearable I could stop it but surgery was a permanent decision to make.
I don't regret my decision so far, and the pain did get intense but I just took a week off and started again. The burning comes from the good skin as Aldara burns it, so try to put the cream only on the affected area and not too thick. No painkillers taken during the time on Aldara.
Reading some of the notes here I would say the surgery would be worse than the cream.
Hope the pain eases for you soon.

@oktave20 were you able to sit and get up and function using the cream?

@oktave20 have your doctors given you any information about what causes this disease?