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

Raihan

Not Sure
Spent: $2,000 in England and Germany

Comments (31)

Updated 26 Jan 2010

Posted 25 Jan 2010

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!

This review is the subjective opinion of a RealSelf member and not of RealSelf, Inc.

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My Doctor: name not provided

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

Comments (31)

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KeshaMari 30 Jan 2010

Hi there. I was really interested in your story for two reasons. One, I have had one lipoma removed from my spine years ago and can feel that I have at least five more on my spine alone. I have some on my chins as well, and I believe there's on in my diaphragm. Two, I am a cytotech Major and Pre-Med student who is very interested in research and pathology. If you want my honest opinion, I believe you should consult for more opinions. The fact that you are vomitting and have such frequent urination is a reason to have heightened concerned. Not only that, lipomas are not meant to be painful themselves unless they happen to grow on or between an area of bone or soft tissue; as with lipomas of the spine perhaps growing in between the intervetebral discs. The reason I feel so strongly about you investigating your condition further is because I had complained about back/spinal pain for nearly two years. I visited doctor after doctor and every single one of them told me that there was nothing there. Blah, blah, blah. It took ONE doctor (and quite strangely, a physician that had a reputation of not knowing her craft) to figure out that I had a lipoma on the posterior side of my lumbar vertebra. Yes, keep investigating until you find the answers. Lipomas are just fattty tissue deposits. They themselves should NOT cause you pain. I wish you much success in your search. If I come across any additional information I will be sure to pass it alone.

iris986 17 Nov 2011

Its called Dercums Disease

bigrughead 28 Feb 2010

I wanted to comment on the pain related to lipomas. I am 43 years old and I have a large number of lipomas all over my body. I was also told not to worry about them. I had one in my back, which was about 10cm in length, which was painful to the touch. I had it removed and was told that the reason why it was so painful was because it was an "angiolipoma". This is defined as a benign tumor that has blood vessels intertwined with the lipoma. My biggest concern is if these eventually would become "liposarcoma" which are malignant. I know they are very annoying, but I was told just to ignore them.

allthatjazz 4 Jul 2010

Just regarding your biggest concern that a lipoma would become malignant, I've just been for a specialist visit regarding a lipoma. They will remove it or do a biopsy and test it under the microscope to see if it is a malignant one or not. The specialist clearly stated that if the test comes back saying it is a benign lipoma it will never develop into a cancerous one. They are either malignant or benign. So maybe as a suggestion you should get biopsys done on the ones you are concerned about. You have to trust your doctors and feel satified within, that what I do.

San Francisco8813 27 Oct 2010

This sounds like Dercum's disease, exercise promotes growth of the lipomas. Treatment is reduce stress and no exercise. Weird, but check it out and see if it fits.

Peternotsoperfect 28 Dec 2010

I think your stuffed the more you have removed the more they come back,your gona just have to learn to live with the little blighters. I have had some removed from my back and thighs, I am hopeing that one will grow on my knob , just to make the the old sex life a bit more interesting, but no luck on that one so far!! will keep you posted.

rackets 22 Apr 2011

I am 41 I have been suffering with these since 2000. I have had several genetic testing,nerofibertosis was the first thing they said. Then they said they were just lypomas and now they say they are swanomas which are nerve tumors that are benign. I have one in my spaine at c5-c6 they have been watching. problebly 10 in my stomach 10+in my legs anmore in my arem. I have had some removed on my back and legs. The new ones in my legs and arms are very painful and one one the back of my right arm just above my elbow is now 2x3 inches it causes me to have numb fingers to the poit i cant use my hand for 30 mins. when I wake up . I also am at a loss and would love to know more.

lipomasux2 18 Sep 2011

I have several (what I'm told are) lipomas all over. Mainly my arms. Between both arms probably 20-25. Most are tiny 2-3 are a about 1cm. One in my chest, one in abdomen, a couple on my sides. I'm sure there are more but none that are obvious. A couple on the arms hurt when disturbed but nothing too bad. The one on my abdomen I'm concerned about. It is harder and is painful to the touch. (if pressed with a bit of pressure) My sister has these too. Not sure how many but enough to wonder WTF. I doubt there could be a cure for these but perhaps an explanation of why the form would help. Or if even a way to prevent them. If anyone has info on this post up.

Peternotsoperfect 19 Sep 2011

Firstly you cant do nothing to stop them ,, there going to come ,have them taken out and they will be replaced by others , thats the way it is,, I was hopeing I might get one on my knob , no such luck, I have a twin brother he has none, my son who is forty has them and has had a couple taken out that were a hindrance, I have a daughter who thank the lord is free of them, mine came from my mother side of the family who had them, just a few on her arms as I recall,, its hereditary .If I had all mine removed I would be a stone lighter,unless you have one in the middle of your forhead ,forget about them , move on lifes to short..

From Indiana 21 Sep 2011

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

Peternotsoperfect 22 Sep 2011

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.

From Indiana 22 Sep 2011

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

RN from Va 6 Feb 2012

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.

Peternotsoperfect 23 Sep 2011

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..

poisontea 25 Sep 2011

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*.

Peternotsoperfect 26 Sep 2011

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!!!!!

From Indiana 25 Sep 2011

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!

poisontea 28 Sep 2011

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

From Indiana 28 Sep 2011

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

poisontea 28 Sep 2011

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?

Peternotsoperfect 2 Oct 2011

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.

poisontea 28 Sep 2011

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

Peternotsoperfect 2 Oct 2011

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??

JMichael 15 Oct 2011

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

Peternotsoperfect 16 Oct 2011

Theres no hope then!!!were doomed..

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

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