Multiple Lipomas Removed but More Painful Ones Now Growing - and New Problems Too

Hi, I'm a 32 year old male, athletic build and...

Hi, I'm a 32 year old male, athletic build and never been obese or had weight problem. I have had multiple lipomas removed, more than 80+, over three operations. In 2005, I had two operations to remove them from my arms.

By late 2008, I had to have 60 lipomas removed as a number of them were quite painful and they had regrown on my arms (mostly in nearby places from where they had grown last), but there were 30 in my back (a number over my spine, most of them in the back were extremely painful), up to 20 on my abdomen and chest, the rest were in my legs (thighs/hamstring area), buttocks and on the ribs. I've since felt awkward about my body, primarily because of the huge number of scars!

Now, just over 14 months later, atleast another 20 have regrown - new 'lipomas' are cropping up all the time (some are extremely painful to the touch, but not always rounded), depressingly many of them are in the same place as where others were removed & in some places where one was removed 3 or 4 have grown next to each other, some are even becoming more and more painful and are already the size of golfballs (5cm)! I'm also finding that I'm going to the toilet a lot more, to pee mostly, but often I find I get shooting pains in my bowel (if I don't go regularly, usually at least 5 times). My sleeping pattern is irregular, I don't get much of it. I feel sick and at times I vomit :(

To top it off, my knees are getting more and more weaker and painful too ... But at NO point during all these years have I had a biopsy nor an internal scan! My doctor keeps saying it's just multiple lipomas and not to worry but he isn't a specialist.

The procedures done have been under general anaesthetic as numerous lipomas have been removed each time. However, I don't know for sure if it is multiple lipomas as now I have more and they're painful. I also have additional problems now, pain in my knee joints, problems sleeping, occasionally feel like vomiting, also the new lipomas are not always round shaped and I get more and more every month!

Nobody else in my family, sisters, cousins, parents, grandparents nor next generation after me have/had it, only me :( ... So it can't be Familial Multiple Limpomas, can it? I'm awfully concerned it could be much worse, Dercum's or Ander's Disease or worse still, liposarcoma perhaps - and I'm really scared about it.... When I was 26 I had an undescended testicle (from birth) removed - could that be related? PLEASE HELP ME SOMEONE!!! I don't want to die :( ... Thanks in advance!

34 Comments

Dear all, i am also a sufferer of Multiple lipomatosis, i have got lots of experience with them.I think, at last i have found the way to avoid them.The main cause of happening of lipoma is still not known to me.For me,when ever a lipoma or few lipomas popped up, it always happened when my sleep cycle got disturbed due to work(mainly physcal).I think physical strain without proper sleep is the cause.Nail-biting disorder and multiile lipoma is also related (cases overlalp).sleep disorder is not a outcome of lipoma but a cause...to elaborate..due to strain body releases some hormones to compensate ..though blood..they leak through the arteries which carry them..and fat molecules get attracted by that leaky harmone and forms a lump... it is just my obeservation..any one observed the same
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Sounds like Dercums. I developed mine after a bout of swine flu. Had trouble breathing and was put on high dose steroids for a few days. Sterois and Dercums are 2 things that really do not go well together.

I know it can be scary. I did my own research and when I saw the dermatologist, I told him what I thought - Dercums. He agreed with my line of thinking. I spent a fortune on scans to rule out any other causes and the all came back with the same comment adipose tissue lobulation. I have the same symptoms – frequent urination, abdominal pain. But you simply learn to live with it all. In 50 percent of the cases they come back with a vengeance after excision and you get more than you originally had. And it is not liposarcoma– they grow quickly, become quite big and do not come out in dosens. Worth seeing Prof Mortimer at St Georges / Parkside hospitals in London or Dr Karen Herbst in San Diego. Both are authorities on Dercums. I saw both.
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Painful lipomas that proliferate quickly with stress and exercise is Dercums Disease. I have been searching for answers for 3 years. I was diagnosed a year ago and then went to Dr. Herbst in San Diego , CA to get the firm diagnosis. Unfortunately there is not much you can do accept pain, management rest, no stress, no exercise accept gentle swimming. It is notable that there is a high rate of reoccurrence if removed. However , I have large ones in my abdomen that are affecting my organs. They are crowding my diaphragm , stomach and intestines. I am currently seeking surgery to remove those.
Dercums Disease is a very rare and painful disorder. If you think you have it educate yourself and also your doctors. Don't give up but be aware that there is no cure. If you catch it early there are things you can implement but you need to speak to Dr. Herbst in Ca. She is the foremost expert.
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I think it could be misdiagnosed as my doctor isn't a specialist, just a General Practitioner (GP)

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