← Return to Dercum’s Disease: Let's create a support group

Discussion

Dercum’s Disease: Let's create a support group

Chronic Pain | Last Active: 3 days ago | Replies (119)

Comment receiving replies
@c3p0

All I have ever heard is that removing Lipomas only causes more to come. I saw a video from Dr. Herbst where a patient had a lipoma removed and when they removed the bandage there were 4 more. I don't know about EDS so I'm not trying to steer you anywhere but ask questions if you decide.

Jump to this post


Replies to "All I have ever heard is that removing Lipomas only causes more to come. I saw..."

@madvzebra you are exactly correct in regards to having basic outpatient surgery where they cut you open and remove the lipoma you would like removed HOWEVER as @madvzebra said it provided little to know relief not because one grows back in its place but because there were dozens of additional lipomas plumed directly below and around the lipoma being surgically removed. I am a perfect example in just what NOT to do unfortunately SMH because of the lack of information out there for us and with even speacilist not knowing very much about our disease I literally learned months into following my primary care drs advice that I had to become my own advocate for my disease if I wanted to get the help I needed however prior to that I had one of my drs surgically remove a total of 9 lipomas (3 per hour long appointment) which has left scars all over my body when prior to this year I didn’t have a single scar on me and it was all for nothing because all 9 that I had removed there were dozens directly below them that just filled the newly emptied space! So the last time I went in to gave this procedure done which was in September of this year I had my Dr attempt to remove a fist size lipoma which was made up of dozens of marble size lipomas which had fused together in my lumbar region wrapping around from my abdomen to my back and causing pain, muscle cramps, gastrointestinal issues and major constipation issues as this one fights back against me when attempting to gage a BM and when he got in there and cut down as deep as he could go he said Doug this mass has grown through your fascia, it’s into your muscles and very possibly even pushing on a portion of my large intestines which happens to be directly behind the area that this large mass has grown into so he removed one marble size lipoma from the top more surface level, stitched me back up and sent me on my way because that’s all the further they can go when having lipomas removed surgically the way I’m explaining it. My dr did however had me go in for full magnetic imaging of my entire abdomen and back minus my spine since we already gave an MRI of my entire spine showing where the pressure from these lipomas and adipose tissue that I’m growing has literally pushed my hips forward giving me hip dysplasia and it’s cause led me to have severe back pain for the first time in my life which started back in May of this year. I can only stand for so long before my lats start to violently shake and my legs give out if I don’t sit down. This is because per my speacilist all of the bulging discs and lipomas in my spine and they confirmed that all of my muscles throughout my entire body including most of my nerves are all deeply encased in the Adipose tissue that I’ve been growing for multiple years now burrowing them deeper abd deeper down into this adipose tissue which is much harder than skin therefore it was confirmed that all of muscles are all being severely pressed on harder and harder with every passing day from the slow growth of these things my muscles are AT FULL FLEX so just as a body builder in the Olympics would do squats and when he or she goes down into the squat position their muscles take on the full load which has them all at full flex before the body builder then stages back up straight and completes the rep thus allowing he or she to rest their muscles abc nerves HOWEVER in my situation my muscles have been at full flex for years now and it’s so bad that anytime my adrenaline starts to flow gif wherever reason especially in a fight or flight situation anytime I have found myself in those situations this year the second my adrenaline begins to flow my lattes violently shake and my legs automatically just give out causing me to just crumble down to the ground it doesn’t matter where I’m at I can’t control it and it really has me worried along with multiple other symptoms that I’m experiencing so anyone out there who happens to read some of my story and has advice for me I would love to have it.