Has anyone had Paget's disease of the vulva?

Yes I have had it for 6 years. Surgery, all went well then it returned a about 2 years ago. Since then it just won't stop growing...Had 3 more surgeries and the pagets is coming from behold the clitoris. The surgery is in November and my Dr wants to remove the clitoris and get it all. I'm considering this because I'm tired of being in pain all the time. And unfortunately I am also incontinent so the urine irritates it all the time. I'm trying to find an OAB medication to help with that but since I'm 71 some medications can cause memory loss and I don't need any help with memory loss. Has anyone had their clitoris removed and was it very painful?

@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.

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.

Thanks for the reply. How did you protect the non paget areas? Did you use anything for the pain or irritation? Sorry to ask so many questions. There is limited info for vaginal application. Thanks again

@ichinnaya
It’s definitely worth trying imiquimod. I have used it twice. The first time I had to discontinue the 12-week treatment at 6 weeks due to the severe irritation it caused, but it did reduce the Paget’s. The second time I tolerated it far better, and the Paget’s was not detectable. I know it will recur, but I hope I can keep it controlled with the cream. Good luck!

@chaka67
I find a small amount of THC 125.125 mg transdermal cannabis cream (1.1) helps a lot with itching. If prescribed (in canada at any rate) it is tax deductible.

Just an update on my Paget's journey: have had 7 surgeries since 2013, last being December 2024. Obviously it continues to return. Always difficult post-surgery but willing to continue as long as Paget's not invasive. Have tried Imiquimod, even tried using lidocaine ointment to quell the burning while using imiquimod, but still found to be too uncomfortable, so I stopped. However, I understand some folks have had great success with it, so definitely give it a try.
As for soothing regular itching, I have found success with silver sulfadiazine cream. Seems to calm the skin & relieve itching for several days.
After all these years, I have lost hope that Paget's will be gone. I have even lost hope that anyone is even trying to find the source of Paget's or a cure. Just hoping I can cope while my husband, with Parkinson's, is alive. I wish you all the best & am grateful for this forum. I have NEVER met a single human in person with Paget's.

@susanpagets
Hi I posted in the forum about getting some info on Imiquimod cream. I also have pagets and had surgery and it came back in few months so did laser treatment and it came back again. Now my dr wants me to try the Imiquimod.
I don’t know anyone who’s used it so wondering what to expect. Any advice would be appreciated thx

Ladies
I’ve been trying to find things to manage the itching, pain due to pagets. I’ve been taking Trunature probiotics and it has been really helpful. I also make sure I drink lots of water. The days when i don’t, the itching and burning is unbearable. I also tried coconut oil, olive oil and other lubricants but Vaseline works best for me.
Good luck on this unpaved path that we are all on.

I am about to start Imiquimod next week. I’ve been postponing it because I am so scared of the pain. Pls share advice on how to apply, what to expect, and tip to manage the pain and side effects. Thank you.