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@sonyac518

I have Paget's Disease of the Vulva. I had surgery September 6 and am still recovering. I had no idea what I was in for the doctor gave no inclination of the pain and recovery burning. The sample came back and the margins are not clear, so I don't know where I am going from here. I do not want to have any more surgeries I do not think I can take it. I retired less than a month prior to my diagnosis and am not mentally handling this well. I'm sure to caring for other people, not being down. I hope your doctor actually explains things better. I still don't know what is going on.

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Replies to "I have Paget's Disease of the Vulva. I had surgery September 6 and am still recovering...."

@sonyac518 I did not have Paget's disease of the Vulva so I cannot offer you any ideas of how best to handle the ongoing pain and burning. I do know what burning in the genital area feels like from many infections over the years and that is horrible so I can only imagine.

This is an active and ongoing discussion. A few other members who have experienced the same diagnosis and surgery as you will pop in here to give you their thoughts and suggestions.

When is your next appointment scheduled with your surgeon? Do you have a phone number you can call and talk with the doctor or the nurse before your next appointment? Do you know if you will have any other treatments?

Has your doctor talked to you about a chemo type ointment called imiquimod? I has been used with good results in the past 3 years or so and is preferable to surgery in many doctor's opinion. My SURGEON, has stopped most surgeries and is using imiquimod as a first defense. If you seem to need more surgery, I certainly would seek out a doctor who would be willing to try that method. The medication is not expensive. Only $30 if you used GoodRX. It is not a new drug.