Has anyone had Paget's disease of the vulva?

Thank you for all of this and your humor. I am in Washington State. I will go to all of these sites and will after all these years get a FB account. Continued prayers for all with EMPD. 🙏🏽

Dr says I am healing beautifully.
Y’all seek second and third opinions until you find a doctor that answers your questions.
Some people are being helped with Imiquimod. Visit myempd.com. They are the reasons I avoided a partial vulvectomy! Blessings to you all!

https://www.myempd.com/
This is way easier to understand than Dr. Google. This stuff is like Kudzu (folks from the south will understand)! It is hard to destroy!

Wishing you all blessings and good health!

Victoria

https://www.medifind.com/
This will help!

First, let me say that YES, I am the praying type just as I know that God directed my every move on this, so your prayers are welcomed!

It is a secret facebook group. If you scroll to the bottom of myempd.com, it will help you get in. Of course, you first need a fb account, but it doesn’t mean you have to use it for more than the board. Way more help there than here!
Are you in Washington? I am in Virginia. Try this: look at medifind.com
Put in Extramammary pagets disease under condition you are looking for and your location. That is how I found the doctor who did my moh’s. Otherwise, I would have had a partial vulvectomy without scouting biopsies, etc. and no CT scan to check for malignancies. See if you can find a doctor with experience in this. I am healing well! Seeing the doctor tomorrow.
Saying a prayer for you now, friend!
Victoria

I need to find a Dr. that I trust that does MOH's. I didnt get this the first time. I have also never been offered a CT Scan to look for more. My Gyn/Onc at UW in Washington told me that was all that could be done. It is so sad for me and others. I did find this website just last week and thank you. I have some calls into different Drs. Nothing back yet. Thank you, Thank you, for your information and kind words. Healing takes a while hope your doing okay. The group is on FB? I dont have FB but would be willing to get it to be included in the group. Thank you Victoria! I hope you are clear as well and if you are the praying type I will pray for you. LRCG

I should add that I am recovering nicely, and though sitting is a little uncomfortable, I am very glad I chose Moh’s surgery rather than a partial vulvectomy!

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.

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

@janeellenmc When I got the results from my biopsies, it said invasive Paget’s. The doctor said it was HPV driven and I remember reading that it was but can’t remember where as I was doing a lot of reading about Paget’s when I was first diagnosed.
I am negative for HPV.