Lipoedema - My story by Katherine Goodman - Part 1
I have always had larger un-shapely legs, round knees and no ankles after having children. I was smaller in the shoulder and waist
During my pregnancies, my legs grew, I put on some baby weight and after having my son decided I had to lose it all. Off to the gym starting with cardio, a calorie-controlled diet and then later weight training. My weight dropped 14kg, I lost most of it from my upper body and very little from my legs, the very area I wanted it gone from. I looked weird, all out of shape, bony shoulders, ribs sticking out and big legs, my pants size never changed as I still needed to fit over my large ankles and thighs. Feeling defeated and unable to manage so many days a week in the gym, working, a young child and the older one starting school I gave up with the personal trainer and the Dr saying some fat is harder to lose.
Heading into my 40s I noticed my legs were continuing to grow, my knees were getting more painful, my ankles now had ‘cupping’, I had inner thigh pads and knee overhang. I then tore my meniscus, the scan was very painful as the young attendant squashed my leg into the device and then tried to close up pinching and causing pain. Fortunately he was interrupted by the older attendant who said we can’t do that as it's hurting me and he made some adjustments. A torn meniscus with no explanation, no this was not a sporting injury. It was surgically repaired. I continued to tear both meniscus's just living and working, arthritis my G.P said.
Frustrated with the sensitivity, pain, swelling and clothing that didn’t fit, I went to my G.P showed him my legs and said their was something wrong. He told me I was overweight and I should exercise more and diet. I tried, I was walk/running 5 km and biking, not much happened. In frustration I went back and he said keep trying. Again, I went back and he said it might be fluid and gave me a script for diuretics, I was not sure I agreed with him. Back again and he thought maybe their was a vascular problem so he gave me a referral for the Gold Coast Hospital vascular clinic. The first intern I met said you have some veins but in my hometown, I would have said you had a parasite but not here, come back for another appointment. At the second appointment the intern said we can fix your varicose veins. I was sent for doppler assessment, the technician was very empathetic and said you have some veins but you have some other tissue abnormalities, something is wrong here but your veins aren’t too bad. Upon returning to the room with the intern he then brought in his teaching Professor, I was assessed from top to bottom. The professor showed the intern my shape, my knee pads and the ankle cupping and said to the intern we cant help this lady. He turned to me and said ‘you have Lipoedema there is nothing we can do for you, I’m sorry, here is a Facebook group that will be able to help you and a referral to an OT for compression which you need to wear at all times’. I cried all the way home.
I joined the Facebook group and read. I now had a diagnosis but let down to discover that any surgical treatment was considered cosmetic, no government help, no Medicare. I read lipoedema is genetic and told Mum, she was devastated, Mum now knew why her legs were the way they were and sad she had given this thing to me. Another of the hardest impacts was my daughter was also diagnosed, she is now actively handling this condition. I am saddened by the lack of ability to diagnose this condition here in Australia and the lack of medical education about lipoedema to all health practitioners as it was only by luck that I got a diagnosis. Many of the ladies with this condition are treated as fat and overweight with the blame placed on them when this is not the case – lipoedema is genetic, it effects 10-11% of women because of the hormonal component, it is exacerbated by puberty, pregnancy, and menopause, and it's heart breaking. Lipoedema is recognised by the WHO, USA, UK, and many other countries where medical staff can diagnose, treat, plan, and support, but not here in Australia. The Australian government is not helping any of these women by denying recognition, education, and Medicare, and the resultant fat shaming is harmful and disgraceful.
I tried the keto diet and lost some weight but could not maintain it, became a pescatarian and my weight stabilised. I continued to work and bring up my wonderful children.
My pain continued to grow, I have a physically active job which was becoming more difficult each day. It was now becoming obvious to me that I could not continue in my current state, the pain was becoming to much. I decided surgery was now my only option, I wasn’t coping.
I visited three surgeons. One thing they all said was they would not do surgery until my veins were treated. My veins were done with sclerotherapy on the Gold Coast, the procedure went well.
Katherine's story will be continued next week. If you are concerned you may have lipoedema or would like further information on the condition, please reach out for an appointment.