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Has anyone had Paget's disease of the vulva?
Gynecologic Cancers | Last Active: Jun 10 7:50pm | Replies (130)Comment receiving replies
Hello,
I have recently been diagnosed with EMPD of the vulva. I am scheduled for a partial vulvectomy , but I am seeking out a second opinion first. This has all been too rushed. I started with an intermittent itch the summer of 2022. Last summer, I visited my gynecologist. She thought it was contact dermatitis. She gave me hydrocortisone cream. It helped at first, but the intermittent itching continued. In December, I went to her for a pap, and we decided a biopsy was in order. The next thing I knew, I was scheduled to meet an oncologist/gynecologist. The surgery was scheduled. Meanwhile, I have researched and joined a group called myempd. Go visit the website myempd.com. The people in the group have all experienced empd. It is NOT hpv driven. No one knows why it occurs! Good luck to you! I hope you find your answers!
Victoria
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On January 18, I had Moh’s Surgery on my vulva. It took 4 stages, but I was left with clear margins. All the scouting biopsies done the week before revealed all negative for EMPD except the original. Hopefully, it is gone and won’t return though there is a 5% chance it will. Feb 1, I go for a CT scan with dye to make sure there are no underlying malignancies. Then I hope to put this behind me.