Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18, 2023

I am about to have my 6th vulva surgery for Paget's of the vulva in less than 10 years. That means for about a month after surgery I cannot drive, sit or walk, & I am the my husband's caregiver.
I also had a mastectomy 10 years ago, but was told they were unrelated. Also unrelated is any support for Paget's disease. They have marches for breast cancer. Yet I have never met someone with Paget's. Even this message box underlines the word Paget's as if I am misspelling the word!!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

leg51 | @leg51 | 5 days ago

Good questions! I use the imiquimod at night. My doctor suggested applying lidocaine to the Paget’s areas 30 minutes before applying the imiquimod to numb the area. I then apply the imiquimod sparingly with a Q-Tip. I use Aquafore or Vaseline to protect the healthy tissue. Wash it all off in the morning.

ichinnaya | @ichinnaya | 2 days ago

In reply to @leg51 "Good questions! I use the imiquimod at night. My doctor suggested applying lidocaine to the Paget’s..." + (show)

@leg51
Thank you so much for sharing. My doctor did not suggest that but I will try your suggestion for sure.

I am so sorry that all of us have to go through this with not much support or guidance from the medical community. Most doctors haven’t even heard of or have patients with our condition.
Good luck to all of us!
Thanks again for sharing your suggestions.