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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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I'm glad that the article gave you more information about Paget's, @ameliae. Are you going to seek another opinion at a hospital in the U.S. or elsewhere?
I also have had success with Imiquimod / Aldara
First having excision without clear margins Pagets came back almost immediately
I changed Drs as the UW Dr said there was no other treatment than excision which was going to leave me mangled and completely disfigured. Found a new Dr at OHSU in Portland Oregon
Its a haul but closer than Minnesota or New York.
I have used Aldara for 3 months followed instructions to the letter
It had its moments I was afraid to think it could work.
Another spot developed during treatment. Its a head banger! Went for the checkup had 2 biopsies Dr didnt sound very optimistic we set up a phone appointment for 2 weeks.
I received a call from the Dr 5 days later that both biopsies were clear of Pagets!
It will likely come back but I would rather use the cream than have surgery or loose
my clitoris.
I am 60. Keep searching for the right Dr dont give up
LRCG
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4 ReactionsI have Paget's Disease of the Vulva and have commented on this forum many times. I have had one surgery and the last occurence the Dr. suggested
Imiquimod. They were not sure that I could tolerate it because of the burning but I decided it could not be much worse than what I was going through with the burning and itching that I was experiencing on a daily basis. Much to my surprise, the Imiquimod helped and I have less burning and itching than I had before.
Please let me know if I can help in any way. You are correct, there is not a lot of information or support for this disease.
Susan
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3 ReactionsI 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.
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.
@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
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.
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2 Reactions@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.
@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!
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