Lipoma/Dercums

Posted , 20 users are following.

I am not surprised that this article does not metion Dercums Disease.. a syndrome that some here may have. very little is known about the disease and because of that it is very difficult to get diagnosed. I have 70+ lipomas, many painful, and am quite delibiltated, however it is virtually impossible to get any medical assistance. My doctor and the hospital specialists (endocrinologist and neurologist) have all diagnosed me with dercums but freely admit they cannot find any treatment available under the NHS.

I am now unable to work full time but as the disease is not recognised I cannot get any support from social services or the Department of work and pensions.

I suggest if anyone is suffering the symptons of not only multiple lipomas but also pain, memory fog, possible weight gain and tiredness they research Dercums and return to their GP as we need to get as much info out on this condition as possible

4 likes, 34 replies

34 Replies

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  • Posted

    I have sufferd from these for many years. I forst started noticing them while in the army aged 21. I was only 12.5 stone at the time and had quite a few. as i worked in the medical centre, we used me for lessons and had a few removed by myself and the team. I was lucky enough in civvy streetnow aged 38 to have a GP that origonally trained as a surgeon, so was happy to have someone to cut open again. Ive since moved house and havent had any removed in about 5 years. I now have very prominent ones along my left arm and one now under my chin. the descriptions online stating these generally grow in legs and buttocks is wrong. I have them everywhere, arms, face, legs, back, torso....

    I would love to go under the knife and have them all done in one go. I dont care about scars. I have heard that Liposuction can be succesful for this too. for those who dont want scars.

    if any surgeon wants me as a guinea pig and take these all out, then please feel free!

    to anyone having them out, my first hand experience of a successful removal is to instert forceps into the incision and open, tearing away the fibres that keep it attached. if a surgeon tells you they will cut it away, try and get them to use my taught method, it has been much more successful with it not coming back. ALL of mine that were done the surgeons way, have returned!

  • Posted

    I have dercums and had over 70 lumps removed over a 10 year period.  I am looking for speicalist who can explain further what this diease long term conditions are.  Within two years my life has completely changed from a working mother to a houseband person who has now been terminted due to ill health and relay more on the teenage boys to help with most of the housetask. Is there any speicalist within United Kingdom that

    could help with this illness, as now I have been told I have them some growing behind my eyesballs, which could lead to blindness in the futher.

    Kind regards

    SP

  • Posted

    Yes my story started when I was 14 I am now 50 I have had about 24 cut out they seem to regrow I was never over weigh but am now it just seems never ending
  • Posted

    Reasearching any disorder before visiting a physician is excellent advice.

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