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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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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.
@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.
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?
@foster14
Is pagets disease the same as lichen sclerosis? What’s the difference?
Thanks!
I don't think it is the same...Pagets is a chronic diease,and is pretty much pre cancer.
pagets of the vulva is so rare that not even my primary care dr knew what it was. Its frustrating because there isn't anyone you can really talk to about it. My Dr is the only Dr in Portland Or and is great but he is retiring in January. So I just don't know what will happen now.
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1 ReactionI use a and d onitment , I figure its good for diaper rash why not this?
My Dr said it was ok
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1 Reaction@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
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
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