Has anyone had Paget's disease of the vulva?

@chaka67 My mother was diagnosed with perianal pagets in 2008. Absolutely no information or support on pagets. It's craziness. They were able to remove hers with a fairly minor wound and cream as well. They said that it wouldn't be if it returned, but when and where. She stumped the doctors 10 years later with a very strange cancer presentation that they couldn't quite figure out. Ultimately, when she passed away, she had breast cancer(wasn't even in her breast, lung cancer, and what somewhat presented as lymphoma or myeloma

You were right about saying you couldn’t do anything for a month. It’s been 3 weeks today for me. I still can’t drive, etc. was your first surgery the worst? Have you used the cream?

@foster14 I’d had it two years that I know of. I thought it was an irritation from my underwear. The doctor didn’t biopsy it, and she prescribed steroid cream. Fast forward a couple more doctors and I was told to use Vaseline, diaper rash cream, etc. the surgery is extensive and they used a laser, also. I had 30 stitches that pulled apart after two weeks and I now have an open wound. The doctor is letting it heal in its own. I’m glad you caught yours early. This is a nightmare - especially since they don’t know if they got it all, and it recurs. They didn’t use mapping - they got what they could see.

@bouf1948
My dr prescribe Narco for me which is Vicadin and Tylanol. You can also take Advil with it. Talk to your dr he should be able to help. Also cold packs helped me.

@bouf1948. Your surgery must have been more intense than mine. I caught it early and had a biopsy to confirm it. I was told I could shower every day. I also used a stiz bath which helped. It is a bowl like object that fits under the toilet seat and you put warm water in it and soak. You can get one at a place that has a medical supplies or order one from Amazon. I got one at a Kroger store.

@bouf1948 I am so, so sorry. May it heal quickly. I don't understand why you can't get pain meds. That's cruel by the wounds of it.

@oktave20 update: my stitches broke open and I have a gaping wound. They are letting it heal on its own rather than put new stitches in. Intense pain, and I can’t locate pain meds because of crackdown.

I can walk - I’m on day 11 post surgery - the sitting and getting up have been bad. I haven’t had any help, so I’ve had to do everything myself. I truly don’t know how you’ve endured so many surgeries. Have some of them been smaller than others. Have you used cream?

I read on this website to put organic honey on the wound. I asked my surgeon and he said no. I’m putting triple antibiotic ointment on my wounds. Today I can say I have noticed a slight decrease in my pain - I’m on day 11 after surgery. I don’t think I could go through this again.

@bouf1948 when it became more pain and burning I took an ibeprofen and put some Greek yoghurt on the good skin in my vulva to ease the burning. Help for a while but not long enough. Nothing else used so I feel the pain from the cream is far less than what I have read about surgery.