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Has anyone had Paget's disease of the vulva?
Gynecologic Cancers | Last Active: Nov 12 7:05pm | Replies (166)Comment receiving replies
I am trying to find support having been recently diagnosed with Paget's Disease of the vulva. Upcoming surgery. Can't find anyone who has had it, who understands, and who can help. Seeing the above - unable to sit, drive, walk for a month! Is that typical?
Replies to "I am trying to find support having been recently diagnosed with Paget's Disease of the vulva...."
I have Paget's Disease of the Vulva and have commented on this forum many times. I have had one surgery and the last occurence the Dr. suggested
Imiquimod. They were not sure that I could tolerate it because of the burning but I decided it could not be much worse than what I was going through with the burning and itching that I was experiencing on a daily basis. Much to my surprise, the Imiquimod helped and I have less burning and itching than I had before.
Please let me know if I can help in any way. You are correct, there is not a lot of information or support for this disease.
Susan
@ameliae
I am going in Wednesday for my 4th pagets of the vulva surgery, this time they will be taking the clitoris out also since the pagets is behind it. They have tried to go around it but it seems like its stemming for around there and I'm damned tired of this every 10 months surgery and being in pain the rest of the time. It took me several weeks before I felt comfortable with driving. I did walk as much as I could though
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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