Has anyone had Paget's disease of the vulva?

I am 2 1/2 weeks out of surgery. It is typical for 3 or 4 weeks of healing. Mainly I find having any clothing on the area is irritating so I'm home only getting dressed if absolutely necessary for appointments. Make sure you have a sitz bath. Nobody told me to do that after surgery and it caused problems. I don't know how anyone could do this 6 times once was enough for me

Hello: May I suggest that you reach out to the Mayo Clinic in the US. I read that there are three locations. Perhaps Colleen can stir you in the right direction. Or the Cleveland Clinic as one of us suggested. I find you much too young to be dealing with this strange disease!!!! I am curious to find out from you and from all of you if any of you had Papilloma Virus? About 25 years ago or some three quarter of my cervix was contaminated by PV. The gynecologist had burnt the affected area and after numerous Pap Smears i was fine. Until manifestations on my vulva 3 years ago and that is when i receive the diagnosis of Paget's Disease of the Vulva. I am treated solely with Imiquimod which has also another name which escapes me at the moment: Aldara??? It is a cream. It has discomfort but it is getting easier... I was recommended to have the clitoris removed and i had scheduled the surgery when my oncologist informed that Imiquimod showed successes. So i tried. I was 65 when diagnosed. Even though no one seems to know exactly about the proper protocol (as not enough studies have been done so far), because the growing number of people affected, research will pick up some speed. As far as I know it is my only foyer of pre cancer or cancer manifestation. Cross fingers. Please do keep us updated. Prayers and happy thoughts

Thanks, Colleen: I am hoping Amapola can be seen at the Mayo Clinic. 37 is much too young to go through this disease. i will respond to her shortly.

@amapola1987, if you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

I'm tagging @chaka67 @ameliae @juju67 @lrcg @ima1survivor @janeellenmc @victoria15 @biancasmythe @lydiamae @bijou68 @joyceinil to bring them back into the discussion. I'm sure you've read their stories in the previous comments and the treatment options they chose.

@amapola1987, I can understand your concern about recurrence after already having had surgery for extramammary Paget's disease twice in the last four years. Has it returned? What treatment options are you exploring?

Thank you for your reply.
I am in Iran. The medical services here are more than in the entire region, but I can travel for medical treatment and go to another country that has more expertise in Paget disease. I want to prevent the disease from returning as soon as possible.

Hello @amapola1987 and welcome to Mayo Connect. It sounds as if you have been dealing with extramammary Paget's for some time now and I can understand that you are looking for some other treatment options.

You do not say where you reside, so I don't know what country (or countries) might be near you. However, please know that Mayo Clinic does see international patients. Here is a link to appointment information, http://mayocl.in/1mtmR63.

Here is some information from Cleveland Clinic in the U.S. about this disorder and what treatments are offered at Cleveland Clinic,
https://my.clevelandclinic.org/health/diseases/24266-extramammary-pagets-disease
From reading the article from Cleveland Clinic, I see that this can be primary or secondary Paget's Disease. Do you know if yours is primary or secondary (from another type of cancer)?

Hello. I read your message and would like to know how the surgery went?
I am a 37-year-old woman who underwent surgery for extramammary Paget's disease twice in the last four years. I wanted to get more information about the countries that perform specialized surgery and also the medicinal methods.

God Bless you too and keep you, in good health. Are you talking about removing the clitoris? That is what was scheduled for me three years as it was discovered that I had EMPD of the vulva as the precancer was very close to the clitoris. Then three days later my Oncologist asked me if I would take a topical cream named Imiquinod. It worked as far as wiping out the brownish spots but 2 years later, more spots so Imiquimod again and again, gone... I see my OB/GYN who spots the Paget cells... on August 1st. I have mastered the side effects I experienced the first time. It is trials and errors like with everything else. I have also reached a no suffering while being injected with Lidocaine as a pre shot and then biopsies... One has to ask for pain killer because otherwise they do the biopsies with no preparation. The shot before the biopsy is as painful as the biopsy. I have listed the protocol at one of my responses to other in same dilemma. If Kaiser does not follow my protcole then I would say no and trust me when I say that they have to oblige because pre-cancer goes into cancer and costs them a lot more than one occycodon and lidocaine cream before their lidocaine shot...

Thank you for sharing your experience. That is sort of what I expect to go through as well. Will see an oncologist on June 19. I am 85. I have already had my ovaries, uterus and cervix removed years ago. But I'm sure they will check on everything else. I don't think I can stand the operation I've heard about in this group. I assume you have been recently diagnosed?
Please let us know your results after the PET scan. God bless and keep you.

Please see reply below to @joyceinil