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Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18, 2023

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!!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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foster14 | @foster14 | Nov 12 7:05pm

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!

REPLY
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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 12 5:47pm
In reply to @foster14 "@ameliae I am going in Wednesday for my 4th pagets of the vulva surgery, this time..." + (show)
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@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

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@foster14, I thought I'd check in. I hope recovery is going as well as can be expected. I look forward to hearing an update when you feel up to it. For now, I wanted you to know I'm thinking of you.

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foster14 | @foster14 | Oct 31 2:17pm
In reply to @ameliae "I am trying to find support having been recently diagnosed with Paget's Disease of the vulva...." + (show)
Profile picture for ameliae @ameliae

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?

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@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

REPLY
1 reply
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foster14 | @foster14 | Oct 31 2:10pm
In reply to @kanderstag "@colleenyoung Thanks for reaching out, Colleen. I can share my experience with clitoris removal. I had..." + (show)
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@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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@kanderstag
Thank you for letting me know! I have been dreading this!

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foster14 | @foster14 | Oct 30 9:54pm
In reply to @foster14 "@colleenyoung Unfortunately I have incontinence problems, and at times not able to get to the bathroom..." + (show)
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@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.

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@foster14 I read The article you mentioned and will give it a try. Thank you

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foster14 | @foster14 | Oct 30 9:47pm
In reply to @colleenyoung "@foster14, I'm tagging a few members like @ftwtxgirl @chaka67 @kanderstag who may be able to share..." + (show)
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@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.

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@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.

REPLY
1 reply
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kanderstag | @kanderstag | Oct 30 9:15pm
In reply to @colleenyoung "@foster14, I'm tagging a few members like @ftwtxgirl @chaka67 @kanderstag who may be able to share..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@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.

Jump to this post

@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

REPLY
1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30 8:12pm
In reply to @foster14 "Yes I have had it for 6 years. Surgery, all went well then it returned a..." + (show)
Profile picture for foster14 @foster14

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?

Jump to this post

@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.

REPLY
2 replies
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foster14 | @foster14 | Oct 21 3:11pm
In reply to @leg51 "Good questions! I use the imiquimod at night. My doctor suggested applying lidocaine to the Paget’s..." + (show)
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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.

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I use a and d onitment , I figure its good for diaper rash why not this?
My Dr said it was ok

REPLY
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foster14 | @foster14 | Oct 20 6:39pm

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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