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Multiple lipoma - share your experience

Familial multiple lipomatosis is a rare disease. With this condition you get multiple lipomas (dozens or hundreds) all over your body. Lipomas are usually encapsulated.

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Joined: Wed Jul 26, 2017 8:22 pm

Multiple lipoma - share your experience

Post by michal » Sat Jul 07, 2018 9:28 pm

Hi guys

I'm 40 yrs old. I noticed my first lipomas when I was roughly 15, there were two in my forearm. In my 20s and 30s new ones were appearing mostly in forearms, stomach and back. By the end of 30s I had more and more and my thighs were impacted as well. Some of them I removed surgicaly, mostly the biggest and in most visible places. Scars for me are much better than these awful lumps. Some of them are really tender when I touch them. Having lipomas is awfull experience but when they are painful it irritates me even more. Pain reminds me about their existence. Nowadays I think I may have 35 - 40 of them, different size, from sunflower seeds to beans. I don' t hide that having them is really depressing for me, very often can't stop thinking of my fate as multi lipoma owner.

I have few questions.

1. This year I reached 40 yrs. Is that truth that very often from more or less this age lipomas growth is speeding up regarding the size and number? Can you tell that from your experience? Im afraid to get them even more than before.

2. I'm quite slim and it's hard for me to put on weight. My digestive system is extremely fast. I attend a gym and run on regular basis. Is that truth that whey protein consumption can affect lipomas growth? I mean in negative way. I'd like to use it to build a little more muscle.

3. How do you, multiple lipomas owners, cope with them mentally knowing that the process of growing and appearing of new ones is inevitable?
It makes me depressed. What about you?

I'd be grateful guys for sharing your experience here.
Posts: 5
Joined: Sun Mar 25, 2018 2:16 pm
Number of lipomas: 100+

Re: Multiple lipoma - share your experience

Post by Neil » Tue Aug 14, 2018 12:03 am

Hi Michal-

I’m about to hit 60 years of age and have too many lipomas to count. I’ve seen a marked increase the number and size in the last couple of years, in particular. Not happy about it but not much I can do about it other than having them surgically removed. In fact, I have surgery scheduled for later this week. The plastic surgeon will only remove 8 at a time.

The mental aspect is the hardest; however, I believe its not as big an issue for others as it is for me. My wife tells me that she’s not bothered by them at all.

Diet and exercise doesn’t seem to have an impact though I always wonder about alcohol and carbohydrate consumption. I have exercised almost daily since my teens but it doesn’t seem to have a positive effect in terms of reducing the formation of new ones. The one correlation that I have established in my experience is that I seem to get more when under extreme stress. Of course worrying about the condition doesn’t help!

Hoping someone discovers a magic bullet for—at least—stopping the formation of new lipomas.

Best wishes for coping with this condition.
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