‘If only the GP had known what lipoedema was, I could have taken measures to slow its progress’

My name is Laura McCreath and I am 44 years old. I would like to share my story as I would really love to help this disease become more well known in this country, and particularly to encourage NICE to see that people like me are the reason why it is so important to agree to having surgery for lipoedema in the UK.

I started my periods aged 11, and looking back now, I can see that from that moment on, it all started. My periods were so severe that I would be sent home from school regularly, and for years I constantly complained to my Mum of ‘growing pains’ in my legs. When I turned 20 I was put on a contraception pill and my weight exploded in the space of six months until I was nearly double my original weight. I couldn’t explain it.

At 24 years old, I had my first child, and my second at 29 years old. I continued putting on more and more weight, struggling through the pregnancies with so much pain in the lower half of my body but never understanding why. I was told things like, ‘You are a “fit” fat person’ by health professionals who repeatedly checked my cholesterol or thyroid trying to find a reason why I was ‘fat’. 

As I got older, I continued to have pain, heaviness and severe hypermobility. The hypermobility was diagnosed by a chiropractor who I began to see three years after my second child was born, because I was surviving on nonstop daily painkillers. I am sure this is the reason for my stomach issues today. In 2020 I began to start complaining to my GP that I was getting swelling in my feet and legs. No matter how much I kept them elevated, the swelling would not go away. Along with this, my periods stopped and I started to become depressed. (I now know this was the beginning of perimenopause.) The GP would give me water tablets but they did absolutely nothing.

Then along came lockdown, and my life really took a turn for the worst. During this time my weight exploded again; my bottom half, stomach and arms ballooned; and my mobility started to diminish. I could barely walk or drive, and couldn’t lie comfortably in bed, so I began to sleep on the sofa downstairs. Going upstairs then became very difficult and dangerous, so that stopped. 

I visited the GP again when we were able to see them face to face, and I forced them to look at my legs, which were deformed, swollen and painful. I was treated like a complete annoyance, and asked, ‘What do you want us to do about it?’ I made a complaint and requested that a referral was made to a leg clinic. By this time, I was walking with a stick at the age of 41

Within minutes of my first appointment at the lymphoedema clinic, the nurse said, ‘My love, you have Stage 4 lipoedema and lymphoedema. Unfortunately, there is not a lot we can do for you and even compression is going to be difficult because of the size of your legs.’ My legs looked so deformed and I had a mass on the inside of my right thigh the size of a melon (or sometimes twice that size), which made it difficult to walk. The nurse went on to explain what the disease was, that there is no cure other than non-cosmetic liposuction, and that it is virtually impossible to obtain liposuction without travelling and spending thousands of pounds. 

Seeing pictures and finally understanding, I could look back at photographs and see when I was in Stage 1 or 2. If only when I first started going to the GP someone had known what lipoedema was, I could have taken measures to slow down its progress. I sent a letter to my GP practice with an information booklet begging them to research and learn. Since then, I have become completely disabled: I stopped driving for two years, was housebound, had severe depression and nearly died of pneumonia. As terrifying as that was, it was almost a blessing. While in hospital, my leg healed as it was continuously leaking lymphatic fluid. I was on a catheter and lost four stone of fluid within a week
, and was not allowed to return home until I was provided with a hospital bed. Social services then became involved, and for the last three years I’ve been trying to get moved into an adapted bungalow. 

Until then, I live downstairs in my home and must drive 30 minutes to my Mum’s house in order to get a shower once a week as I cannot go upstairs in my own home. I am unable to apply for an electric wheelchair as my home is not wheelchair accessible. My bed is in my living room. This is all due to having no mobility, thanks to lipoedema. If I could get surgery on my legs, I would have my mobility back and be able to live a normal life again – walking, working and living like a human being should. I think at the very least I deserve that in life. You certainly learn to appreciate the small things when so much is taken away from you. I try to live my life positively and remain hopeful that, by some miracle, one day I will be able to walk comfortably again.