Angie McCarroll from Waringstown in Co Down had surgery for varicose veins on both legs in 2005. When she noticed a strange swelling around her ankle a couple of years later, she was referred to a second vascular consultant who, after tests, diagnosed lipoedema. As we begin Lipoedema Awareness Month, Angie talks about how this chronic, progressive condition has affected her life.
I was diagnosed with lipoedema 10 years ago at the age of 45. This long-term condition occurs almost exclusively in women and involves an abnormal build-up of fat cells in the legs, thighs and buttocks.
I had always hated my large, cumbersome legs and, when I was offered liposuction on the NHS, I jumped at the opportunity to get those Jerry Hall legs!
The surgery on my lower legs in 2008 was contracted out to a private clinic in England and all went well. As soon as I got home, I purchased my first ever pair of full-length boots. The world was my oyster... or so I thought.
I wanted to understand my condition, so started researching lipoedema and went to my GP as a first port of call. I was in shock when he told me he’d never heard of lipoedema until I was diagnosed with it.
He was very supportive, though, and arranged an appointment at my local lymphoedema clinic, where I was prescribed compression garments and given manual lymph drainage.
It was only through this appointment that I began to realise there was more to lipoedema than meets the eye!
Soon depression would rear its head. One thing to remember is that depression and anxiety can be caused by pain, and lipoedema is a painful condition.
Even if you’re not consciously saying “Ow, that hurts”, there is often a low level of pain present. This drains your energy, both physically and emotionally.
A year after my surgery I was referred to a plastic surgeon in Northern Ireland, with a view to having liposuction on my upper thighs. The surgeon was very honest and explained that, in his opinion, the initial surgery on my lower legs should never have been carried out.
He explained he’d spent 15 years doing research into lipoedema and there was no cure. He said he could lock me in a room for a year and feed me on lettuce leaves and, sadly, I would still be fat. Liposuction was not the answer.
These days I manage and control my condition as best I can by wearing compression garments. I also pay privately to have manual lymph drainage done as this is no longer available to me on the NHS.
It has made a vast difference to my overall health and, in fact, reduced the size of my legs on the areas that have not had liposuction by up to 9cm in places!
My focus these days is on advocating with medical professionals and members of the public and I do this with the help of Talk Lipoedema, which is an online support group that currently has more than 1,000 members.
My hope for the future is that someday every medical professional will address with their patient the tell-tale signs and symptoms of lipoedema - the first being the problem of terminology.
Many medical professionals confuse lipoedema with lymphoedema. Lymphoedema is due to the build-up of fluid in the lymphatic system, while the underlying cause of lipoedema remains unknown.
It is thought to be associated with hormonal disorders and is a build-up of fat cells rather than fluid. Unlike lymphoedema, the feet do not swell, which creates a band-like appearance just above the ankles.
This lack of recognition is probably leading to many cases of severe lipo-lymphoedema that might have been prevented by having more awareness and earlier treatment.
My mum and grandmother both had this condition and were unaware of it. My daughter may well have inherited it, but is only showing very minimal signs. Thankfully, she knows what she needs to do to try to manage it if she does.
For further information, visit http://www.wounds-uk.com/pdf/content_11941.pdf and
For online support, visit http://www.talklipoedema.org
Do you think it’s fair that Angie has to pay for her own treatment? Have you had NHS funding for treatment withdrawn?
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