Elaine's Story: experiences of surgery

I wanted to share my surgery journey with you all, in the hope that it might help inform someone out there considering surgery as a route of treatment for lipoedema.

In 2020 I was made aware of lipodema via a friend and I soon suspected that I had it too! I immediately looked into the condition and options for treatment and came to the conclusion that surgery may be my best option. I thought I was fairly early stage and so wanted to do all I could to prevent progression.

I did a significant amount of research into surgeons both in the UK and abroad, and initially I was overwhelmed with the information and considerations I had to make. I spent three months talking to other women with lipodema online via community groups, and reviewing online sources of information. I eventually decided that I was going to go abroad for my surgery (based on very limited options in the UK and overall results I had seen), and I narrowed down my surgeon choices based on a lot of criteria: experience, logistics, cost, technique etc.

I had two consultations with two different surgeons and made my choice based on my experience with them. The surgeon confirmed I had Stage 1/2, type 4 from the photos I had sent over. A sense of relief and anxiety overwhelmed me; I focused on the next step.

My surgeon had a list of pre-op test requirements, including a Doppler scan, ECG and blood tests. This was another significant cost and required a lot of research to obtain them privately, but were essential to ensure I was an appropriate candidate for surgery. One month later all tests were complete and sent off to the medical team. Within three days I had my first surgery date, which was six months away. This gave me time to plan logistics and obtain pre-op compression, which I had to wear for months before the op. I also got myself as fit as possible to aid recovery and healing.

As the time got closer I became quite anxious and wondered about my choice to have surgery: was I doing the right thing? There are so many documented risks to the operations, with the general anaesthetic and the whole process that the decision was not to be taken lightly. However I decided to go through the motions. Next step, pack, flight and so on.

On the day of the surgery, I was equal parts excited and anxious. I was excited for the possibility of what my new legs would be like and, of course, anxious about the risks. As soon as I met my surgeon I felt much more at ease. He was so reassuring and supportive and talked me though the process step by step. He could tell I was nervous so never left my side.

The next thing I knew I was in my hospital room, post-op, and they had removed around 4 litres from my lower legs!

I felt ok medically and was in and out of sleep due to the anaesthetic. I was discharged the next day, but was in the country for many days post-op, as per the instructions of my surgeon. The medical team checked in with me every day via photos and WhatsApp and I had a one week post-op follow-up appointment.

The first two weeks were pretty tricky with limited mobility and tenderness. I had MLD every day which helped immensely. The main challenge was the emotional/ mental side. I asked myself: "what have I done to myself?" on more than one occasion! I was very thankful to have my husband with me for both physical and emotional support. Initially I couldn’t look at my legs as the bruising was brutal but after three weeks they had pretty much disappeared, which was mainly due to MLD and the post-op care regime I had to follow. Slowly I began to accept them as mine.

I returned home and felt a sense of uncertainty as I missed the bubble of support I had abroad with my MLD therapist and surgeon. However I had an MLD therapist in the UK and soon realised what a fantastic support she was.

Day-by-day things started to return to normal. I began to exercise about three weeks in and returned to work after four weeks. My emotions settled and I started to see the changes in my legs. The pain and the heaviness had gone. Overwhelming moments caught me unexpectedly; mourning for the life I could have been living, as well as gratitude for the opportunity to change the situation.

Just as I felt back to my old self, I had to do it all again. I waited three months in between surgeries and I think it was just about the right timeline. I felt strong and was not looking forward to doing it all again, but I knew deep down I could get through it and had to trust in the process. So I did it all again, this time on my upper legs, and had just over 4 litres removed from them. It was easier emotionally and physically, which my surgeon advised would be the case, though I had been reluctant to believe it!

I continue to see changes in my legs now two months post-op and do not regret the surgery one bit. Hindsight is a wonderful thing though and it has not been easy. I really had to press pause for six months on my life and only now am I really living it again. I wear compression daily and will continue to do so for as long as I feel necessary.

To anyone considering surgery, I wish you well in whatever journey you decide to take.