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.

joyceinil | @joyceinil | May 27 9:57am

In reply to @victoria15 "I had a CT scan on my chest, abdomen, and pelvis. All clear." + (show)

So glad to hear you got an "all clear". Wonderful news. God bless and keep you.

victoria15 | @victoria15 | May 27 12:33pm

In reply to @joyceinil "Thank you for your reply. Your information is helpful. Hope everything is clear in June." + (show)

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.

joyceinil | @joyceinil | May 28 1:30am

In reply to @victoria15 "Thank you! If you are interested in the “secret” facebook board for EMPD that is filled..." + (show)

I 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).

bijou68 | @bijou68 | May 28 9:13am

In reply to @joyceinil "Very new to this group. I am interested to hear about your protocol. I'm thankful for..." + (show)

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.

joyceinil | @joyceinil | May 28 10:51am

In reply to @bijou68 "Hi! Yes, the biopsies in that fragile and highly sensitive area are brutal. I no longer..." + (show)

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?

bijou68 | @bijou68 | May 28 11:01am

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?

bijou68 | @bijou68 | May 28 11:07am

Maybe it depends where exactly where your biopsy was done, on clitoris or on the labia where mine were and on both sides.

joyceinil | @joyceinil | May 29 12:58am

In reply to @bijou68 "Maybe it depends where exactly where your biopsy was done, on clitoris or on the labia..." + (show)

I am going to see a dermatologist tomorrow. Will discuss all with him. Area doesn't look too bad. Thank you for your help.

joyceinil | @joyceinil | May 31 1:01am

In reply to @joyceinil "I am going to see a dermatologist tomorrow. Will discuss all with him. Area doesn't look..." + (show)

Is there anyone who lives near St Louis, MO and has had found a place to get treatment?
I went to my dermatologist who discovered the EMPD and he said he found on place that would take me as a patient. That was St Louis University in St Louis. I live 55 miles from there but I'm sure that is the closest place for me. Washington University is the most prestigious research hospital near me. Surprised they were not interested in my case. I'm just glad there is at least ONE place where I can go for treatment. My appt is June 19. So I have a few more weeks to stew about this.

joyceinil | @joyceinil | May 31 1:02am

In reply to @bijou68 "Maybe it depends where exactly where your biopsy was done, on clitoris or on the labia..." + (show)

bijou68
I have another question maybe you can answer. I don't remember who mentioned this, but what is a punch biopsy?

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