Has anyone had Paget's disease of the vulva?

@foster14, I'm tagging a few members like @ftwtxgirl @chaka67 @kanderstag who may be able to share more about having to have surgery due to tumor growth around the clitoris.

On the topic of overactive bladder (OAB), I wonder if you've even heard of bladder training. Read more here:
- Control frequent urges with bladder training https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/control-of-frequent-urges-with-bladder-training/

You sure have been through a lot of surgeries.

@colleenyoung
Unfortunately I have incontinence problems, and at times not able to get to the bathroom in time. That and with the pagets the urine burns so bad.

@colleenyoung
Thanks for reaching out, Colleen.
I can share my experience with clitoris removal.
I had a diagnosis in 2022 of vulvar melanoma. At the time I was 79.
After biopsy, I had removal of the vulva however the margins were not clear so it was decided to be extra safe and remove the clitoris. I really had no problems with that surgery per se. This was followed by 20 radiation treatments, and 13 months of immunotherapy. I did have what you could expect in terms of raw tenderness but I believe that was more caused by the radiation treatments than the actual clitoris removal.
I’m not sure this is helpful but it was my experience.

Best
Kanderstag

I am trying to find support having been recently diagnosed with Paget's Disease of the vulva. Upcoming surgery. Can't find anyone who has had it, who understands, and who can help. Seeing the above - unable to sit, drive, walk for a month! Is that typical?

@ameliae
I am going in Wednesday for my 4th pagets of the vulva surgery, this time they will be taking the clitoris out also since the pagets is behind it. They have tried to go around it but it seems like its stemming for around there and I'm damned tired of this every 10 months surgery and being in pain the rest of the time. It took me several weeks before I felt comfortable with driving. I did walk as much as I could though

I am trying to find support having been recently diagnosed with Paget's Disease of the vulva. Upcoming surgery. Can't find anyone who has had it, who understands, and who can help. Seeing the above - unable to sit, drive, walk for a month! Is that typical?

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

I appreciate you checking up on me! Recovery is doing okay. I have a post op appointment next Tuesday. I'm hoping that this will help keep the pagets at bay for a while longer then 8-10 months. I've been walking around the house as much as I can. This may be the second reply, I didn't seen the first one so I replied again!