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Has anyone had Paget's disease of the vulva?
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!!
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Maybe it depends where exactly where your biopsy was done, on clitoris or on the labia where mine were and on both sides.
I had no pain afterwards. Have you looked at the area with a mirror to see if it is not red? Have you told your dr that sitting is uncomfortable?
Thank you so much. I have written down the procedure you do before biopsies.
Could I ask one more question? I had my first biopsy two weeks ago and area is still very tender. Seems to be healing but sitting is still uncomfortable. Does this seem normal to you?
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.
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1 ReactionI have applied t myempd.com but have not heard back yet. Thank you for the tip to join the "secret" FB board. Will definitely do that as soon as I get in. I think my request has been delayed because of the holiday (Memorial Day).
Thank you!
If you are interested in the “secret” facebook board for EMPD that is filled with info from those who deal with EMPD, visit the website, myempd.com
It gives you the info. You need to get to the facebook group. They were instrumental in my getting the appropriate care I needed for this disease.
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1 ReactionSo glad to hear you got an "all clear". Wonderful news. God bless and keep you.
Thank you for your reply. Your information is helpful. Hope everything is clear in June.
I had this scan Thursday. See my oncologist in two weeks for results. Waiting is hard, as we all know. This is my oncologist from almost 20 years ago when I had surgeries and treatments for breast cancer. The surgeon/oncologist for Paget's is at a different hospital. I haven't seen her in almost a year as I got thrown by a car, broke shoulder/humerus and more - so concentrating on healing - and relieved in a way not to have to make a decision and tell the surgeon again I don't want surgery. But will someone follow me ... in that case.
@victoria15 This is wonderful news. Congratulations! 👏👏🎶