Has anyone had Paget's disease of the vulva?

Hi! I do not know what a punch biopsy is, but when you find out, can you share with me? Best regards, Bijou

Hi! Yes, the biopsies in that fragile and highly sensitive area are brutal. I no longer allow biopsies to be done without preparation following a discovery of spots on the vulva by either OB/GYN or oncologist, because the lidocaine shot hurts as much of biopsy itself. I asked for: oxycodon with anti nausea pill then lather my area with lidocaine 5% then I go to my appointment and they put more lidocaine gel, then lidocaine shot or shots for multiple biopsies then it goes painless. Amen! My theory is: if you don't ask and obtain a yes that they will follow, ask forcefully again. I deal with Kaiser and happy to say they oblige me. Thank goodness.

I was diagnosed with Paget's Disease of the Vulva on April 28th, almost by accident. I have had it for at least 7-8 years, followed by my GP. So few medical people know anything about it, including my GP. I was having a polyp removed in late March and a good friend (a pharmacist) suggested I ask the surgeon to biopsy my vulva. Alas! There it is. I've wrestled with it. had tests. Seen different docs and ended in the oncology/gynecology clinic with amazing women surgeons who work as a team. I've been on a roller coaster since April 28th, but now, after various tests, options presented, knowledge that margins are not clear and that it comes back in a very high percentage of cases, my age (almost 77), and I live alone - I have pretty well decided to live while I'm alive and not have the surgery. It has been slow growing. Maybe that will continue. Vaseline helps with the pain present in one spot more than others. I have an appointment with the cannabis clinic at the hospital to see how they can help with pain. I had a consult with a plastic surgeon who says he could do it --- huge areas of my thigh used ... however, he also suggested I might ask for surgery to remove the most painful areas. Next appointment with surgeon mid-October. I've done a lot of research to educate myself. It has been beyond stressful, as you know. May your healing come ... Troubling that so few medical people know about it. For that reason, I gave permission (it was mine to make)for the others the plastic surgeon brought in to see. Looking for other ways to share - and have done so with friends and on facebook ... would like to be able to do more at a hospital level or in other ways. I keep speaking of it there. Only two others have been treated for it at this hospital.

No. I didn't try surgery. It's not unbearable. Itch and burn. Cannabis products prescribed help. The surgery would be massive including taking skin from my thighs. There has been very little experience with EMPD where I am. I suspect some people mis-diagnosed as I was for about 10 years. My life is good. I'm 77. going on 78. The idea that it just keeps coming back - I'm opting right now for quality of life. As far as I know it is not invasive. I get test results of scan next Friday.

How do you know it is not invasive? Did they test lymph nodes? I 'm hoping I can get some sort of treatment like you are doing. I'm not a candidate for surgery as I am 85, on Eliquis (blood thinner) because of A-fib. Have hiatal hernia, diabetes, arthritis and many other old-age type of disorders.

How do you know it is not invasive? Did they test lymph nodes? I 'm hoping I can get some sort of treatment like you are doing. I'm not a candidate for surgery as I am 85, on Eliquis (blood thinner) because of A-fib. Have hiatal hernia, diabetes, arthritis and many other old-age type of disorders.

I actually saw my oncologist yesterday after a CT scan and blood tests. Not the surgeon or hospital where the Paget's was discovered. Gynecologist are centred at a different hospital. My oncologist has ordered a biopsy of a lymph gland in my neck, a PET scan which will apparently show signs if there is cancer. Plus an MRI. He is very concerned (as am I) about cancer not necessarily related to the Paget's. He said there's no way to know it is invasive without tests like biopsies, if I understood correctly. That blood tests aren't precise enough... anyhow - I am shaken - but so thankful not to, at 77 1/2 have gone for the horrific, very large surgery that was suggested for Paget's. I may be dealing with an entirely different beast - and will know more after the PET scan, etc.