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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!
Name not provided

I think it could be misdiagnosed as my doctor isn't a specialist, just a General Practitioner (GP)

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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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If you're drinking milk and american beef, stop. The US allows recombinant bovine growth hormone. Go organic. Take baths in epsom salts. I know everyone hates baths but you need to and you have to use epsom salts. You need the magnesium for the soreness. Did you have a parent in the military? poisontea4u@yahoo. elizabeth.
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I myself am 22 and I get these all over my lower back, fore arms, and abs.

I've been consistently getting more growths as my body has grown. I can usually feel them coming in before they are visible. It's like having muscle soreness and along with built up muscle I get Lipomas :(


I'm 5'9" and 155 lbs, very athletic. Male.
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I can't get diagnosed as having Dercum's. My surgeon has never heard of it. I haven't counted all my cysts but I'd say I'm near one hundred. Most surgeons seem to think it's not worth removing them if they are just going to come back. The surgeon did seem surprised when I mentioned I had cyst since early childhood.

Maybe we have other illnesses in common. I have scoliosis, mitral valve prolapse, hypermobility, joint pain, lactose intolerance, asthma, diabetes, PMdd, premenstrual psychosis,migraine, allergies, med resistant, bipolar, ocd, non specific phobias.
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But there is hope! :D

And I have pretty much the same situation as the original poster. although I have had only 4 of my lipomas surgically removed.

I'm currently investigating alternative treatment options with a bunch of others.

The cause of lipomas is under a great debate. Everybody have their own opinions.

In a way it is genetic but something triggers or alters the genes so that lipomas start appearing. What is is, well we should also be discussing about that. And we are doing so in the lipomaboard. In order to treat and possibly even cure the lipomas we need to understand the underlying cause.

Best of luck to everybody, we will find a cure!
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I am pretty healthy otherwise also
Pain medicine works with hot bath temporarily. But you can't live im a tun! Lol!! Pain med have their own side effect ts om
N the liver...I try to avoid over doing it. Liver function is important! I have noticed stress does make the worse...even if you feel you've handled something...residual stress. I have been eating like I have heart trouble (i don't) but it did seem to help my arm pains, and right leg. I will keep up with the "diary" and keep trying

Do any of you keep a food/activity/stress diary?
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A surgeon doesn't make money unless he can cut you up. I am going to see a new surgeon for an abscess, I'll discuss lipomas with him. Pain meds don't help me, anyone else med resistant?
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Theres no hope then!!!were doomed..
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Too many people are missing the point. Our bodies are continually bombarded with toxins from the air, processed foods, fertilizers, pesticides etc etc etc and sometimes including agent orange. If the level of toxic bombardment is too much for the body to cope with, then some of these toxins will have to be stored inside the body. It's just like the rubbish collection services. Normally they come around once or twice a week and take all our rubbish away to the dump. If however the rubbish collection service slows down or stops then the number of rubbish bags starts to build up inside the home. Eventually the number of uncollected rubbish bags becomes so big that an entire room has to be allocated for their storage........ and the room is given a name, the lipoma room. It is no secret that the fat tissues inside the body are the first place where excess toxins are stored. Of course people exposed to Agent Orange have received a massive level of highly toxic bombardment causing the inevitable overload and leading to lipomas. Doctors do not want to talk about the toxins because it undermines their reasons for surgical excision, an expensive option that does nothing to address the real problem
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Theres much talk about these limpomas,, and from all the posts that I have read there is as yet nothing positive , that says there is a cure, or even how to feel comfortable with them, when mine first appeared I was probably in my early thirties and I was quite consciouse of them , Limpomas are misnomers and in general are inconvenience, but there,s lots of stuff on this forum that are not just Fatty Lumps , me thinks??
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I had two lipomas removed. One in my forearm which was causing me to drop things. One in my should where my bra strap goes. Another has grown in it's place about an inch away. I have lipomas going down my ribcage on both sides. I'm fairly sure I have one near my spine. I have them on my sides. I also have schmorl's node with has something to do with the boney endplates of the spine. I also had cysts from immunizations where the medication didn't spread out and formed the cyst. I also have ovarian cysts.
They also said scoliosis wasn't painful. Well a femaled doctor finally came out and said scoliosis can be very painful.
poisontea4u@yahoo.com
elizabeth
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Thanks, no exposure here. I understand about being told they
Aren't painful. Most of mine hurt...I just started keeping track
Of what makes them worse and what eases them.
I also have been reading about Dercum disease. It fits..but doesn't tell me what relieves pain. I did have cortisone injections for a back injury..seems by the reading there may be a connection.

Have you used cortisone? Steroids etc? I swear my nurologist used it on me for 2-3 years, in form if shots, infusions, and pills to help gain strength in my back muscles ..I still have pain there too, but these are worse!
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I feel for you. Glad to hear it's not AO exposure. The only way to stay pain free, is removal. I did some hedge trimming yesterday and today I found new lipomas in my arms. All down the length of both forearms.
Is there any chance you could also be experiencing fibromyalgia?

Elizabeth
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Hi Elizabeth,
I am not sure, I do get the uncontrollable pains. I was blaming them on the nerves these seem to follow. When I get a cold, or anything like that I get more. I can def say any extra activity causes more too. I started having to take the stairs at work and prob have 10 new formations and others are growing larger. It really is scary just how quickly they show up..and go from a deep ache to a 1-2 inch lipoma in 2 days. I wonder if this is some weird immune disease...I will look into fm...I really need to find a dr who understands.
Renee
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There is a link between fibromyalgia and lipomas. Google it, I can't remember where I found it. There are other ways to come in contact with dioxin. Read up on dioxin alone. I have a cousin with thousands of cysts, his father was in the Korean war. You weren't in Desert Storm where you?
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I did have had cortisone injected in to my big toe joints, athritis!! but that was way after I had limpomas removed from my back and thighs, so I guess that will discount cortisone as being a cause , but it might have aggravated the condition who knows.
I have had both my knees replaced infact the left knee infected and I had have a revision (thats another story,, wont go there) but I run a removal company I am still lifting and doing stairs,I am still quite fit at 67 and I ride a bike .
I dont worry what I look like when I go on the beach anymore I got nothing to prove at 67,, when you got a tan they dont show so much.
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Okay, everyone with multiple lipomas should look into whether or not you've been exposed to the chemical dioxin. Most doctors are ignorant about the effects of Agent Orange. My dad was Air Force and loaded AO into barrels. He died three years ago from the exposure. He suffered multiple lipomas and I do too now. I have a lot in my stomach, some on my back, some in my thighs and I know I've got one near my spine. Now they'll tell you they aren't painful but that's BULL. Anyone who was in Viet Nam, Korea, Goose Bay Canada and a few other asian countries were exposed. I believe these lipomas release something into the body. I'm not sure what. I have tiny ones that cause terrible pain and big ones that sometimes hurt. I've had two removed so far. When I went back to the doc he told me I was just a lumpy person. Don't take they shi*.
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Limpomas have been around before agent orange, and as you can see by your late father, the condition is hereditary,further research in to your family may comfirm this.
I dont think your doctor was very suttle when he said you were just lumpy ,, no wonder your grumpy ,, where is Snow White!!! 2 out of every hundred persons have lumps in varying numbers ,I supose its possible to have been misdiagnosed,there is another condition not so common as Limpomas which produces soft lumps under the skin its called Neurofibroatosis, not nice , check it out, I think I will stick with my Limpomas. Happy days!!!!!
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http://www.eons.com/blogs/entry/64754-Are-lipomas-painful- Give this a try it will explain why some limpomas are indeed painfull,reading some of the posts on this site , it does indicate that Limpomas can be debilitating, I think reading some of these reports are frightning and may indeed leed to stress , a little knowledge is dangerouse,, at your age of 44 I think you need may be speak to or go see a specialist,easy for me to say as we dont pay over here for medical treatment ,, good old National Health Service, good luck what ever you do..
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I have MANY also--i get a horrible ache and that tells me a new one is forming--lately they have been popping up 2-3 at a time and grow quickly. I have been following a 1000 cal diet, lost very little weight. I have nearly 70 of these and 90% are very painful. I think also it is dercums, but getting diagnosed is difficult-i just want to know a way to relieve the pain without meds...any pointers? (foreams, thighs, stomach, back, hip, chin, temple and wrists). Only ones not painful are on my face! I am only 44--1st showed up at 21. I did see a dermo who just pushed one around--said "hmm, fatty tumor" and "see a plastic surgeon for the one on your eye lid and temple" so out of all these he looked at 3...frustrating. I had one get absessed--went from 1-2" inches to the size of a softball--i went to th4e er--they did er surgery on it. The dr there was willing to mark all of them off and rem...he said they would all do this eventually (hard to believe)...i have a forever deep scar in my arm pit from that one-but it has not grown back (5 yrs). sorry for rambling...just frustrated with the pain
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Well I got to say I never got pain or get pain with the blighters that I have, maybe there are different kinds, maybe the English ones are a bit more reserved, as far as I know there should be no pain from these fatty lumps , but I,m not a doctor where they are situated can be an issue ,, I had one in the small of my back which used make it uncomfortable when driving for long periods , which was removed with some others on my thighs,the one on my back never returned , but others came up on my thighs . Yours sound like a completely diferent breed of limpomas, most folks that post on here seem to be more concenered with the way they look , than the pain side I feel sorry for you , as I cant help with your pain which is I think you will have to seek further medical advice, and I hope some one on this site who has the same problem with painful limpomas will be able to help,, let me know how you get on ...good luck.
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Thank you Peter! I am researching docs now...these seem to go deep, I
can see some, most just feel. The one on my temple is on top very visible. My right leg they are noticeable when it isn't swollen...after alot of walking or sitting too long gets to be inches larger around. My right arm is starting to do this too. I have been monitoring myself, seems like stress encourages their growth...losing 12 lbs did nothing. I do wonder ifthere are other types to, or if these are just growing near nerves by chance. The pain is my concern, because I did read most lipomas aren't supposed to be painful just annoying.


Thanks again for listening
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These types of lipomas were featured on an episode of "Mystery Diagnosis" tonight. Maybe you can search for the show on the web to get further information. The man on the show had hundreds of these, and they are all painful! This poor man has to live with these painful lumps for the rest of his life. I think he is actually up to like 800 lipomas. I will definitely pray for him. It is my understanding that lipomas that are painful are NOT normal. You may be correct in thinking dercums disease. I have about 10 of these on my body and I hate looking at them but they do not hurt even if I press on them. Lipomas are formed as a result of excess toxins released from our blood vessels. The body signals special cells (macrophages, I think), to come along and eat up all these excess toxins. But macrophages need to eat too so the body releases excess fat to feed them and eventually the fat accumulates in a specific area which causes these fatty tumors. Unfortunately, if it truly is decrums, removing these tumors will only make it worse because 3 or 4 could form to take its place. Having so many painful lumps is not normal and you should seek medical attention. The excess toxins being released from your blood vessels could start accumulating in the lungs which could become a very dangerous and life threatening condition. This is one condition that gets worse with physical exercise (due to lactic acid buildup), and stress. I think the only thing that will work on the pain would be warm baths or heating pads because they will dilate the vessels and take pressure off of the nerves, or pain medications. I know people don't like to take pain meds but if it will help you live a more normal life and as long as you use them as prescribed, they could be very beneficial. Try and check with an endocrinologist. I hope this helps. I know how devastating chronic pain can be. Good luck.

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