Hi everyone,

sorry haven’t been on lately. I see we have some new members! I think it’s great! There are a lot more Dercums sufferers out there, just not diagnosed.

I had 158 tumors removed last Sept. 3 were the size of grapefruits, having diabetes caused me a lot of trouble, reopened wound, drainage tubes, alot of trips back and forth to Ann Arbor to the plastic surgeon, had in home nursing to change and pack deep, deep tear.

Well, on April 25 I am going back. This will be surgery number 10 and over 200 tumors removed to date.
The decision will be made Liposuction or regular surgery. And yes, I will ask the plastic surgeon for the over haul on me while she’s in there! you know new face, new curves, new boobs!

Just move that fat around LOL!! will keep everyone updated on her input. I have at least 50 more now, probably more I can’t feel, but the ALIENS HURT HURT HURT!



hi Jan
I am having a few removed …well i am on a waiting list, my concern is that they will grow straight back in clumps and be more painful…is this true? I am in two minds whether to go ahead or not. As I am in England we dont have the much support that you across the pond have, Its still in very early denial stage with our GP’s we have to fight and argue with the GP’s just for a correct diagnosis. Liposuction is out of the question here in the UK unless we go private, very expensive so that wont be on my to do list,… You have had alot of lipomas removed and i really do feel for you, I cant imagine how you feel, I know how i feel and i have around 50 that i can feel…we have to keep smiling.
Thanks for the update

Hello Ladies,

I have had only seven removed so far. That was over a year ago. The dermatologist I saw wouildn’t removed anymore than that at a time. Which was OK with me. I just wanted to see whether they would come back or relieve the pain. And he did it in his office, just giving me local shots for each area.

At this point I do not want anymore removed. They did grow back with more little aliens along for the ride. He removed most of them from the C7-T1 area, which were the most bothersome. I can say it did me any good at all. But mine were very small, the largest being about the size of an egg. But still very painful.

I have so many down my arms, especially the left one, it is really swollen right now. My acupunturist said she could see it had grown in a two week time span. I must be going through a growth spurt or whatever we call it. I have recently gained a lot of weight, water retention is bad and my blood pressure has started going up and IBS is really bad right now too. Tons of fun!

Best of luck getting your aliens removed, I hope it goes well without complications.

Hugs Hugs and More Hugs :o)

"I am in England we dont have the much support that you across the pondhave, Its still in very early denial stage with our GP’s we have tofight and argue with the GP’s just for a correct diagnosis. "

LOL, I giggled when I read this. We are dealing with exactly the same thing here in the USA. Doctors look at us like we have horns or something, deny DD even exists, and tell us to go home and lose weight and we’ll be fine. I suspect it’s that way just about everywhere.

I had a biopsy for Dr Herbst’s study and my lumps came back and brought lots of friends with them. They are more painful than the originals. I have also noticed that I am riddled with painful lumps everywhere I have ever had any kind of surgery. These things just love scar tissue. Personally, I think it is usually best to leave them alone. I may change my mind if I lose the use of my hands and find I can buy some time by having lumps removed from them, but it would take an extreme circumstance like that.

please see the original site for Dercum’s sufferers ^& info on the leading researcher Dr. Karen Herbst in San Diego and some of the original stories from the people on the front lines suffering with this disease. Lots of info here.

Please have a look at this website and get the proper treatment and information from this website.

Hi guys,
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Hello dear,
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