Lipomatosis Survey

[caribou]

Hey, everyone. I just thought it could be interesting to see what your history with FML is like. I would really appreciate if you could answer these questions for us:

1. Is anyone in your family affected by FML besides you?

Did one of your parents have it, what about grandparents, aunts, uncles? Siblings, cousins? Great grandparents? Were there any differences regarding the severity of lipomatosis? Did someone get just a few lipomas, while others got tens or hundreds? Were there any offspring of people with FML who didn't get FML themselves?

2. How old were you when you got your first lipoma and did they proliferate fast?

Did you get many in your 20s, 30s, or 40s, 50s? Did they grow in size fast or slowly? Was there a time when the number of lipomas suddenly escalated?

Also stories of other family members' experiences (or people you know with lipomatosis) would be appreciated.

3. How many lipomas do you have right now? (And how old are you right now?)

If the answer is no, you can skip these two:
4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

6. Are you male or female?

Thank you so much! I'm very curious to hear others' experiences.

[Charlupa]

Great idea Caribou!

1. Is anyone in your family affected by FML besides you?

My father has lipomas

2. How old were you when you got your first lipoma and did they proliferate fast?

I was 19 or 20 years old when noticed my first. At first they grew very slowly but they are now growing faster. Something I find interesting is that my oldest lipomas are the smallest ones. Many newer ones are double the size of the first ones I noticed. Why do they grow at such different rates?

3. How many lipomas do you have right now? (And how old are you right now?)

I have about 30 lipomas and I am 29 years old.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

I had one lipoma removed years ago when they were small . It left a scar but I dont care as much about scars as random lumps. I do have a small lipoma that has grown close to the scar but I cant say for sure if it has grown back.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?[/quote]

I have tried vitamins and quitting smoking cigs/ drinking. I also started to eat healthy but have seen no results. Some feel softer or smaller sometimes but Im sure its in my head.

[matt]

1. Is anyone in your family affected by FML besides you?

Neither of my parents have them. Don't know about grandparents or any other relatives? Not that I know of.

2. How old were you when you got your first lipoma and did they proliferate fast?

Around 16. I had only one lipoma for years. New ones appeared slowly, mostly when I pumped into something and had a trauma.

3. How many lipomas do you have right now? (And how old are you right now?)

Around 100. 33 y.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

Yes, four have been removed surgically. I was happy they were gone but I still have one nasty scar although the excision was like 5 years ago. The other three scars are pretty fine. None of the lipomas grew back.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

Oh God yes I've tried The three treaments which have had some impact on my lipomas are surgery, lipostabil injections and apricot seeds.

Three rounds of Lipostabil (8 weeks apart) did make some of my lipomas softer and smaller. None disappeared. It kind of looks like they have stayed the same ever after. They have now admitted that lipomas might regrow after initial shots and that recurrent shots make them smaller again. Mine have not regrown although the shots were given ca. 6 years ago.

I used to have pain (especially when pressured) in some of my lipomas. They were also often itchy and more often after heavy drinking. Now for the last year the pain and itchiness has been absent. The timing of the change goes along with my apricot seed consumption but I have no proofs that there's other connections.

[caribou]

^ Interesting, Matt. If none of your parents have had lipomas, I can understand why you're interested in the effect of environment. I would be too with that background.

1. Is anyone in your family affected by FML besides you?

My father and his mother, also my uncle (father's brother). I don't know how many my uncle has or my grandmother had, but my father has at least a few dozen big ones, possibly over a hundred all in all. My grandmother has a few other descendants too, but I don't know whether they've had lipomas or not. My siblings who are 24 and 22 don't have lipomas yet as far as I know.

2. How old were you when you got your first lipoma and did they proliferate fast?

I was around 22 when I looked up lipomas because of my father, discovered FML and looked for lipomas in myself, possibly noticing two. The thing is, even though I'm quite convinced that they are lipomas, they're still so tiny or hidden in subcutaneous tissue and growing so slowly that I can't be completely sure that they're lipomas and not e.g. scar tissue in a tendon due to bumping that spot or whatever. They do feel like lipomas to me though, they have that rubbery texture.

3. How many lipomas do you have right now? (And how old are you right now?)

0-3 or more and I'm 25. I suppose I'm lucky I don't have any more by this age. Like I said, I don't have visible ones yet, but surely I can feel many bumps under the skin if I look for them. From these bumps, I would say 1-2 at least are likely to be lipomas, the rest might be my imagination. On first discovery, I had my family members examine them as well and they agreed it wasn't just my imagination or normal muscles etc. :p

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

I haven't had any removed, neither has my father. My grandmother had at least one surgically removed from her forearm, but it grew back, or alternatively another one grew near it.

[victor]

1. Is anyone in your family affected by FML besides you?

I was told that my Dad got one on his back, but it went away with in 5 months. other than that none of my family members has it.

2. How old were you when you got your first lipoma and did they proliferate fast?

I was 17, when I noticed them first. 2 symmetrical, between my wrist and elbow and one randomly near my elbow
( I was doing lot of pull ups / push ups - I didn't do any workout till 29, but I used to walk a lot till I was 25 )

Till I was 29, I never worried about them, though I noticed 3 more which came up between my wrist and elbow

When I as 30, I did lot of running for a month and stopped, I think it triggered my lipoma growth. I am now 31, and my lipomas started growing rapidly since I was 30 I really hate to count them, but I think I have little less than 100 ( hands, biceps, stomach, thighs, back )

3. How many lipomas do you have right now? (And how old are you right now?)
100 ( hands, biceps, stomach, thighs, back ) Age 31

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
3 months back I had one removed for testing

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
None tried so far ( considering Omega / coq / D Vitamin / Apple Peel / Lactace / Multi Vitamin / Lapis Alba / Water Fasting 1 week every alternate month )

[sjohn]

Victor you got almost 100 lipomas in about a year?

[victor]

Victor you got almost 100 lipomas in about a year?

I should say I will be 32 in a month and I say it took 2 years to have that many.

[chuckinIllinois]

1) My mom has some, but not my father. My two sisters were spared. My brother and I have been afflicted with this disease

2) as is common with FML, mine first showed up around 30 years of age.

3) I don't know how many I have. Too many - easily 100. I am 45 yrs of age.

4) I have had five surgeries. The first one was just general excision. The last four have been general excision and liposuction. I do notice that the more adipose tissue I have, more tumors form. I have been happy with the result for excision. Not sure about lipo. He does remove tumors AND adipose tissue though. I have some in my back that I may try and have removed via radio frequency ablation. I can tell they are either a little deep and/or are intramuscular lipomas. Those are a pain in the butt to remove via general excision and the two I have had had removed in the low back left nasty scars.

5) I haven't tried anything yet outside of surgical intervention as nothing seems to work. I definitely need a major reduction in body fat % or I'm going to have way too many tumors.

[Umar]

1. Is anyone in your family affected by FML besides you?
My father, and his father before him.

2. How old were you when you got your first lipoma and did they proliferate fast?
At 19, I had one or two very little in my forearms. They din't grow for few years.

Did you get many in your 20s, 30s, or 40s, 50s? Did they grow in size fast or slowly? Was there a time when the number of lipomas suddenly escalated?
When I was 22, they started to grow in number. After 23 they started to grow in size. Now I can't wear t-shirts because they look hideous on my forearms.

3. How many lipomas do you have right now? (And how old are you right now?)
24. I have never counted them, I actually can't count them, they are so many, scattered across my forearms, arms, lower back and thighs.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
No, I haven't. I am wondering if there's a way to get rid of them without surgery.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
No. Somebody told me that since they are made up of fats, doing regular exercise in a gym may help. So I would be trying it out. Any thoughts on it?

[umar]

Just registered on the site. Posting this dummy text to get thread updates via email.

[251152]

1. Is anyone in your family affected by FML besides you?
my father has only 1 on the neck

2. How old were you when you got your first lipoma and did they proliferate fast?
17 if i remember correctly. they didn't grow very fast at first, but as I grow older the growth rate increases (I think it also accelerates since I started to work out)

3. How many lipomas do you have right now? (And how old are you right now?)
About 30, i'm 24.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
I removed 2 of them 3 months ago and not really happy with the result since it left scars which do not look as if they're going away tomorrow. No signs of growing back yet

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
didn't try anything else yet, going to order Darryl's Pomaway since I'm in the test group and see what happens

[RitchieT]

1. Is anyone in your family affected by FML besides you?
My Dad has a few but they are small and not increasing in size

2. How old were you when you got your first lipoma and did they proliferate fast?
About 20 years when i noticed my first one

3. How many lipomas do you have right now? (And how old are you right now?)
About 30 and im 32

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
I have had three removed and apart from the scars they are ok, they havnt grown back in the same spot.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
No I havent tried any other treatments.... I wish there were some we could all rely on!

[Michael]

1. Is anyone in your family affected by FML besides you?
My Mom, Uncle, and Grandpa all have them. My Mom never has had very many but now says it seems as though they have gone away. My uncle and Grandpa I believe have more and larger lipomas.

2. How old were you when you got your first lipoma and did they proliferate fast?
I believe I noticed the first one in my forearm early in Highschool. I didn't notice more appearing until the beginning of college. My lipomas always are tender and painful after exercise and this is when I noticed them. It also seemed to appear faster during periods of intense exercise and fatigue but I figure that may also because I notice them more due to the pain.

3. How many lipomas do you have right now? (And how old are you right now?)
I'd say I have close to 100 varrying in size from an quarter size to smaller than a pea. I am 21 years old.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
I haven't had any surgically removed. I have just recently begun researching and thinking of how to deal with this issue.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
I have been taking 2 tablespoons of turmeric in water a day for about a month now without any noticeable effect. I have begun taking beta glucan each day as well a couple weeks ago. I also stopped lifting and the tenderness is much better but I don't think I will know if it actually helps for a while.

6. Are you male or female?
Male

Thanks guys... glad to know others are trying to figure this out too.

[koda]

First let me say how happy I am to have found this board. I was disappointed when the old lipoma forum ended, and it’s great to have a resource and community like this up and running again. I’ve read many of the threads with real interest, particularly the informative ones concerning the genetics of MFL. Plus you learn so much from reading about other people’s experiences with lipomatosis, especially when, like me, you’re the only one you know who’s living with it.

1. Is anyone in your family affected by FML besides you?

To the best of my knowledge my condition, diagnosed as MFL, is a spontaneous occurrence. Neither of my parents has had lipomas, nor anyone else in my family as far as I know. This has always seemed strange to me, since MFL is understood to be inherited, but translocations have to originate somewhere, so mine (if that’s the cause) may be new with me.

2. How old were you when you got your first lipoma and did they proliferate fast?

I first noticed a few lumps on my thighs in my early 20s. These grew slowly through the decades and have gradually spread to the rest of the upper legs, abdomen, and lower back, then to the trunk, buttocks, upper arms, and now the forearms. They are still worst and largest on the upper legs, where there are clumps of them, but some of the tumors on my upper body have been around for quite a while now. I have a lean/muscular build and have consistently kept myself in very good shape over the years. It’s been a challenge to keep these disfiguring lipomas from dragging down my body image more than a little.

I’ve compensated by always wearing gym shorts to the knee when working out, but other than that I’ve tried to take the attitude that the impression of the body as a whole is stronger than the appearance of the lumps on it. I’ll still go to the beach and pool wearing only long trunks, still wear sleeveless shirts at the gym, and still hit the gang showers there with the other guys. If my condition were much worse than it is, my confidence might not be as strong.

3. How many lipomas do you have right now? (And how old are you right now?)

A few dozen, probably somewhere between 50 and 75, but there may be more, since I don’t inspect my body that carefully these days. My current age is 57.

4. Have you had any lipomas surgically removed?

Twice I’ve resolved to have my lipomas removed and consulted a plastic surgeon (thanks to the old lipoma forum, where I learned that general surgeons were to be avoided). One of those times I went as far as scheduling surgery to have most of them out, but ultimately cancelled it because of a work conflict. Honestly, though, I was, and still am, concerned enough about scarring to stop short of surgery.

However, I like to wear short sleeves during the warm months and always roll up my shirt sleeves at work. I’m becoming more self-conscious as the tumors on my arms (just a few so far) gradually grow. So once again I’m considering surgical removal at least for those, and perhaps some on my trunk, plus a sizeable one in my groin that has been a source of irritation and occasional pain. I consider myself lucky that my arms stayed relatively smooth until my 50's.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

No other treatments so far. I’ve been waiting and hoping for a proven and reliable non-surgical or minimally invasive treatment. With luck this will happen while I (along with the rest of us here) am still healthy and active enough to enjoy the results. A couple of the approaches discussed on this board seem promising.

6. Are you male or female?

I am male.

[riz]

1. Is anyone in your family affected by FML besides you?

<Riz> My Father had lipomas.

2. How old were you when you got your first lipoma and did they proliferate fast?

<Riz> Noticed the first one in my early 20(s) they slowly became greater in number in my 30(s) and about 25 of them are bigger than a half dollar, now, in my mid 40(s).

My father had them in the same area(s); thighs, buttocks, hips, triceps, forearm. In his 70(s), he lost a lot of weight and they started to shrink to point of being not notice-able.

3. How many lipomas do you have right now? (And how old are you right now?)
about 40+ and 45years old

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

NO

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

No
6. Are you male or female?
Male

[Marion]

1. My Father had lipomas (his usual quote when talking about them-"those damned lipomas!!!") as did his father.
2.Age of first. I remember finding one at about age 8. They didn't begin to become a problem until about menopause.
3. How many at present? Uncountable. My arms are quite bumpy, one thigh is bulgey in front as if it enclosed a large bunch of grapes. A few along my backbone which can be uncomfortable at times. And others existing from my knees upwards to my neck. I am 73 at the moment and otherwise in pretty good active health. I figure nature is afraid I'll die before using all my resources so I get spare parts made!
4. I have had two surgeries. The first removed 11 lumps of fat (looked like chicken fat)from my arms, and the second harvested 22 from my arms and one from just above my right knee. I was certainly happy with the results and the last surgeon said he'd see me in about ten years for a repeat. That was just over ten years ago. I've just about reached the point of saying the h*** with it and go on with life.
5. I have not tried any other treatments but am wondering if starting a statin drug such as lipitor would have any effect. My cholesterol numbers are always borderline high.
6. I am a female. It is obviously genetic in part, and also obviously not sex-linked since it seems to be an equal-opportunity condition. I have two sisters and one brother. One sister has A lipoma (meaning one only) and the other two have been spared.

[Butter]

1. Is anyone in your family affected by FML besides you?

Yes, my father (now dead) had them in his forearms and, I believe, his trunk. I think he probably had fewer than 10 (I may be wrong). He died of colon cancer at age 65 and I sincerely hope there's no link between the cancer and the lipomas. I have one sister and she has no lipomas.

2. How old were you when you got your first lipoma and did they proliferate fast?

I noticed my first lipoma when I was about 16. It was in my upper left thigh. (I have since had it removed and it hasn't grown back.) Later, more grew at different locations in the same thigh and I had them removed, too. Then I noticed them in a forearm -- those were removed. All of those seemed to grow relatively slowly.

I began noticing much-accelerated development of new lipomas during my 40s (I am 50 years old). I now have them in both thighs and buttocks as well as one in my right forearm. The only one visible from the outside as a lump is the one in my right forearm. I have not been scientific in my observations, but I am sure I have more lipomas than I've ever had before (all small at the moment) and that they are growing more quickly than they have in the past.

3. How many lipomas do you have right now? (And how old are you right now?)

Not sure, but probably between 12 and 20. I am 50.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

Yes, probably three in the left thigh and one (?) in a forearm. I'm happy with the result in that those have not grown back, but others have appeared. So I'm a bit dismayed with the problem generally.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

No. My dermatologist has recommended injection lipolysis (LipoDissolve) and I am very interested in trying it.


6. Are you male or female?

[Rod]

1. Is anyone in your family affected by FML besides you?

No, I am the only one in my family with this disorder.

2. How old were you when you got your first lipoma and did they proliferate fast?

I found my first lipoma in my early 20s and consistently added a couple a year until my 40s when things seem to have accelerated a bit.

3. How many lipomas do you have right now? (And how old are you right now?)

I am 43 years old with probably around 40 -50 scattered around my arms, legs, and trunk. The vast majority of mine are small with maybe 8-10 being noticeable in any way.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

I have had about 20 removed over the years from my arms and legs by both dermatologists and plastic surgeons.

I have been generally happy with the results – most of my scars are not very noticeable after about a year. For me, keeping post-surgical swelling to a minimum, using a silicon based scar gel, and staying out of the sun have been very important in minimizing the scars.

I have had lipoma reoccur near surgical spots but not in the exact spot. I tend to believe these are completely new as my lipoma tend to cluster.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

About a year ago, I decided that surgery couldn’t be the only answer and while I will continue to have surgery as needed, I also decided to pursue other additional routes to address this disorder.

I became a patient of Dr. Karen Herbst last May and have been following her recommendations since that time. Her regimen takes up to 1 year to have an effect so I still have a bit to go before I should see any impact.

I also plan on trying both Lipodissolve treatments and Laser Liposuction on a few selected lipoma to see how it works for me.

I will be happy to keep the group posted on any results (positive or negative) from the above.

6. Are you male or female?

Male

[ryan]

What does Dr. Herbst recommend for FML, if you don't mind me asking?

[LumpyJo]

1. Is anyone in your family affected by FML besides you?

My sister who is 3 yrs younger, had only one so far on upper back, removed due to pain. Younger brother has several. Mother said my (deceased) dad had a few on chest area. Unknown if any other relatives have any.

2. How old were you when you got your first lipoma and did they proliferate fast?

Noticed my first one in late 30's just below ribcage. Had it removed during gastric bypass. Then a few yrs later started noticing more forming. I am now 52 and they just keep multiplying every year. No huge ones, range from rice sized to marble size. Most are painful if pressed on, 10% are the painless, rubbery lipomas and others are the painful ones I consider part of Dercum's Disease.

3. How many lipomas do you have right now? (And how old are you right now?)

I am 52, female, and now have hundreds. About 5-10 on lower arms, 10-20 on upper arms, 2-5 in breasts, 50 or so in ribcage/abdomen area, 30 or so in back, 5-10 in buttocks, 50 or more in each thigh, and now in past year or so noticed them now in knee to ankle area about 10-20. Most are so small (rice sized) and very painful especially in back and thighs.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

Over a year ago, had 4 removed from back by dermatologists. Was a painful experience and left scars. Have now noticed 1 or 2 returned and now have many more in back area.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

None so far. Wanted to try the Noni Juice/Grape Seed Extract regiment, but I just could not stay with it long enough. May try again as some have had success with lumps decreasing in size and number. Regiment based on theory of it having flushing toxins from the body or something like that.

Also will add that I am overweight, which "hides" most of the lumps. Otherwise, if I had little body fat and still had these same lipomas, they would be more visible. I guess I am keeping a layer of fat to help hide them unfortunately