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Just diagnosed with piloleiomyoma Just diagnosed with piloleiomyoma

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Unread 04-27-2021, 03:03 PM
Question - Just diagnosed with piloleiomyoma Just diagnosed with piloleiomyoma

Hi gals, I was just diagnosed with piloleiomyoma. If it sounds a little familiar, that's because it's a fibroid -- a tumor composed of distorted muscle cells -- but instead of growing within the muscle of the uterus, here they are growing in/on the skin.

My hysterectomy 3 years ago was for uterine fibroids and adenomyosis. I had no idea fibroids could be present in other places. I have an appointment with the dermatologist in a month.

This was certainly a surprise to me, as I thought these things were just irritated scar tissue. The dermatologist thought an irritated mole when she took the sample. I guess it's pretty rare. Both men and women get this.

Anybody else have this here? Or familiar with it?
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Unread 05-01-2021, 10:26 AM
Re: Just diagnosed with piloleiomyoma

Hrm... I've heard of a pilonidal cyst but not piloleiomyoma. Pulling up images, they're not at all alike. I can't find any good non-medical article on them to really understand what it is - and of course, if you drop the "pilo", all the hits are uterine fibroids. So is it related to a fibroid?

Edited to add... oh, is this the weird lump you'd mentioned on The Road Less Traveled which your doctor thought was some weird fatty tissue?

I'll be curious to read and follow your updates. The good news is that it looks like it's a benign condition.

Unread 05-01-2021, 10:54 AM
Re: Just diagnosed with piloleiomyoma

Yes, it's a fibroid, but instead of growing in/on the uterus, it grows from the hair muscles. There appears to be a relationship with uterine fibroids and renal cancer. Most women who have uterine fibroids do not have skin fibroids, but apparently most women with skin fibroids have uterine fibroids. They do not grow to the large sizes of the uterine fibroids, thank God.

Unfortunately they are associated with a certain type of nasty renal cancer, also a type of uterine cancer (which I won't have to worry about now). I guess there is a certain gene that predisposes some people to it. Not sure if they'll want to test me for the gene or do CT scans. Like you say, there is not a great deal of info out there.

My skin ones aren't bad, so hopefully it won't get much worse.
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Unread 05-11-2021, 06:23 PM
Re: Just diagnosed with piloleiomyoma

Is there a solution, or is it just a removal of each if it becomes necessary?
Unread 05-12-2021, 05:21 PM
Re: Just diagnosed with piloleiomyoma

I forgot to answer a question -- no, the fatty lump does not seem to have anything to do with the pilio--.
There doesn't seem to be much to do about the tumors... about half the time they come back.
The bigger concern for me is the kidney cancer that is associated with it.
Unread 05-13-2021, 06:30 AM
Re: Just diagnosed with piloleiomyoma

Yeah, don't you love it when a health condition leads your brain down a wandering path which inevitably turns into a dark and stormy night? I'm having more floaters in my eyes and have other signs of less vitreous gel in my eyes and I'm always thinking "retinal detachment" and the cloudiness may be floaters too or it could be the beginning of cataracts and since my mother has macular degeneration and is going blind and since I seem to follow Mom in many genetic traits I'm now too thinking I'll have macular degeneration and so because of genetics will have a revisit of the osteopenia which will eventually become osteoporosis and my dad is Type II diabetes and gee what else am I going to deal with in the next few years.... Run on sentence intentionally written to reflect the runaway brain!

One step at a time, one day at a time. Are you considering making an appointment with a nephrologist? Regular check ups will give you peace of mind and assurance that if anything does crop up, you'll catch it early and you're already on board with a specialist.

Unread 05-13-2021, 08:18 AM
Re: Just diagnosed with piloleiomyoma

Hi Cussette, I've got the appointment with the dermatologist in a couple weeks, so hopefully she'll be able to clear up a few things. There may be other appointments with new and different people to follow.
There are various health problems that run in my mother and father's families. Serious eye problems do not seem to be among them, however, mine are kind of wonky. One of the reasons I badly damaged BOTH of my cars this week was because I was swinging my head around and trying to get used to my new glasses... and backed my winter car right into my "good" car. In my own yard. I have never run into another car before, it's always been other people hitting me. Boy do I feel stupid. I'm not sure if the insurance covers any of it. Oh, I also put a long scratch in my new glasses when I bent down to pick something up and scraped them on a brick wall -- while I was wearing them. You'd think I'd know where the wall is after 40 years! Also I should call my doctor to see what the results of the event (heart) monitor were -- it's been weeks and nobody has gotten back to me. But I've been kind of in a "don't wanna" mood.

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