My Lipoedema story

I carry my excess weight in my legs and bottom, I am, by  medical charts considered morbidly obese. When I get weighed at medical appointments I get a range of reactions: do you  know you are overweight?; are you aware of the impact the excess weight is having on your health?;  would you like to go one the list for gastric band surgery? I consider myself to be reasonably intelligent, so yes I do know the answer to these questions.

During the last 20+ years I have had all of these things and worse said to me. Not one of them have bothered to find out if there is a cause, and all have assumed that I eat too much and that I am generally lazy, and if I defend my eating habits there is a look that comes across their face that shouts LIAR.

I have always stored my excess fat in the lower part of my body, when I left school and had my own money I was free to eat what I wanted and especially things that weren’t available at home, I was, quite literally a kid in a sweet shop. I would happily eat deli sandwiches, and wash it down with a large bottle of coke at lunch and have a calorie laden dinner. Then I had the bright idea to make money for the staff society where I worked and started a tuck shop. It made quite a bit of money and meant that I could have chocolate and snacks in the office without even straying to far from my desk. it was a great success as far as the coffers were concerned but unsurprisingly my waistband expanded.

In 1987 I had a car crash, I wrote off my boyfriends car and bits of me got broken.  I am still suffering as a result of some of the injuries that day. At the time my then boyfriend (and soon to be husband) and I lived in a 2nd floor flat and I was confined to this flat while I re cooperated, I spent my time wisely researching food and learning to cook, another thing that didn’t help the waistline. But I worked hard and got better and lost some weight in time for our wedding.

In 1993 our first child came along and was delivered by caesarian section. We were thrilled. As the job that I was doing came to a natural end whilst I was pregnant I stayed at home to look after our daughter. On the approach to her 1st birthday I had terrible pains and went to the out of hours GP who diagnosed me with gall stones. There is a saying that you only get gall stones if your fair,fat and 40 at this time I was not any of those things, well maybe a little fat.

I had my gall bladder removed and started 9 months of chaos, ending up with me being unable to eat or drink anything,even water, without being sick  I was  so dehydrated,I was turning yellow. My sister came to see me and help me look after my daughter and arranged for a doctor to call on me , he took one look at me and said “where’s your phone I’m calling an ambulance.” Having several saline packs put into me made a huge difference, but it was short lived, none of this fluid was coming out and before long they had hooked  me up to drain and had attached a bag, a few hours later more than a gallon (a bucket full, no  exaggeration) of liquid was removed and shock was a major consideration. I’m still not too sure what happened but it wasn’t over, I had another emergency admission when i became unwell an short while later on holiday in Sussex and had more surgery to remove  sticky residue from my intestines that had been caused by the bile fluid in my abdomen. eventually I got better and fell pregnant with daughter number 2 who was born by caesarian section at the end of 1995.

It was around this time that I first began to notice the fat pads on my thighs that didn’t want to go away when I exercised or dieted. Also at this time my baby was being sick constantly and was loosing  weight that she was considered to be failing to thrive and admitted to hospital. I was already sure she was allergic to milk and this turned out to be the case, but this was not diagnosed by the hospital, who just told me to feed her more slowly! and that she wasn’t that small anyway. I think they missed the point.She was diagnosed by a homeopathic doctor who recognised her symptoms and suggested we should wean her on a diet of goats milk,(it has different proteins to cows milk and so is more gentile on the stomach) mash potato and sardines for calcium, we did and never looked back, she is now a proper grown up young lady who eats everything.

The doctor also gave me a diet to follow and I did, i lost a lot of weight, including the fat patches off my legs. But, it came at a price, no more pizza, no more toast,no soft white,fluffy bread bacon sandwiches and many other things I  love and that is why I fell off the wagon some month later.

Time passed, I looked after the family and when they were old enough I went back to work, The car accident I had had some years earlier was starting to cause me pain, I struggled to get out of bed in a hurry to deal with the babies in the night,having to gingerly weight bare as if reminding my feet that this was their job. It turned out that while the doctors were repairing bits of me ,my foot got overlooked and a bone didn’t heal correctly and allowed it to develop arthritis. The pain became unbearable while I was working as a cook in 2002, although oddly I didn’t realise quite how much pain I was in until a cortisone injection took the pain away and I could remember what it felt like to be pain free. I had a couple more injections and then,as we had healthcare insurance I agreed to have a mid foot fusion operation where the bone that was casing my pain would be stapled so it didn’t move.

The operation was successful and  after 5 weeks in plaster I noticed my foot felt like it was swelling, the cast was removed and it was confirmed that I had suffered a DVT, It was later proved that this was due to the cast being on a lower leg, and not due to any reason. There was now a large mass protruding from my calf and I was told that it was nothing to worry about and would go down on its own in time. It didn’t. In the next 10 years I would periodically get referred to various doctors about my deformed lower leg and although it didn’t hurt that much it was unsightly and did stop me doing things and caused quite a lot of staring and pointing on the beach. The doctors I saw didn’t know what had caused my leg to react like that  or how to sort it out, essentially shrugging their shoulders and saying they couldn’t help me. I now know that I had lipoedeama and should have been treated differently.

In 2013 the tight skin on my expanded calf developed an ulcer, although I didn’t realise what it was and assumed, wrongly, that it would heal on its own. when I finally went to the GP  panic set in as the nurse called the Dr and swabs were taken,questions asked and diabetes suspected.When all the tests came back negative and I wasn’t healing,  they had to think again. In the end it was only the diligence of my practice nurse who asked questions and arranged for me to see a specialist who, the moment she saw me diagnosed lipoedema and lymphodeama. Since then I haven’t looked back, my ulcer healed and I now wear compression socks to keep the swelling at bay, unfortunately due to issues with walking and exercising in the intervening years, I have  a weight problem in addition to the condition that I need to work on. On the plus side  I don’t get too much pain with the condition at the moment

 

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