I first learned about lipedema in 2021 after googling ‘hard fat’ and ‘pain and lumps in legs’. As I tend to do, I went down rabbit hole after rabbit hole to see if this word aligned with the symptoms I was having. I joined some groups online, read people’s stories, looked at photos and felt more and more like this explained a lot of what I had gone through since fertility treatments and my subsequent pregnancy. Lipedema is often triggered by a hormonal change like puberty, pregnancy, or menopause.
I brought this up to my doctor and she didn’t know much about lipedema at the time but referred me to a vein specialist. While this vein specialist was excellent at her job, she looked at my legs and said that they were the ‘best legs she’s seen all day’ and that ‘lipedema legs just look different’ and that she was ’99% sure I didn’t have lipedema’. I said that I was not as worried about the look as I was about the pain and that made her stop and think for a moment. She said ‘well, that is a different matter’ and ’not her specialty’.
During this time of learning about lipedema, I started to do all the conservative measures. This included compression garments, manual lymphatic drainage, vibration plate sessions, gentle exercise, and an anti-inflammatory diet. I also continued to do my research and followed a few lipedema specialist and surgeons. It was during this time that I saw a post from a surgeon in the Chicago area, Dr. Karol (pronounced Carl) Gutowski. The post showed a woman with legs very much like my own that had been treated with lipedema specific liposuction. The post encouraged people to contact the office if you had similar symptoms. And I did!
I sent an email and received forms to fill out. They also asked for photos to help with my case. I sent images of myself along with a drawing I did of where I experienced pain. I soon received word back that indeed it did look like I had lipedema and could pursue an in-person exam and diagnosis. I can’t tell you the relief I felt. Knowing a specialist believed I had lipedema made me feel validated and allowed for me to advocate for myself with my primary doctor and others with certainty. I printed off the lipedema standard of care, made notes on it that related to my story, and brought it to her. I hope that having this knowledge allowed her to better help people dealing with similar issues.
I was able to get an in-person appointment with Dr. Gutowski in February of 2022. He confirmed the diagnosis and wrote up a plan of action including 3-4 surgeries. He said I had stage 2, types 3 and 4 of lipedema but was frustrated with the types. Really, lipedema tissue can grow everywhere on the body but tends to be on the extremities because of the way the lymphatics and hormones interact. I had painful areas on my whole body, like bumps on my ribcage area that are really sensitive to pressure. I was grateful Dr. G realized this and voiced it. Also, when I asked if I had to lose weight before I could have surgery, he said no!! Of course, I was still trying but all my efforts had hardly made a dent. Oh, the relief!
Then came the trying time of gathering proof, continued conservative measures, getting a secondary diagnosis, having to go through an exam to document how lipedema affects my strength and mobility, and working with an advocacy company. Then, experiencing the uphill battle of convincing insurance that this is all medically necessary. I was not able to book my first surgery until I had insurance coverage approval so I finally got that in fall of 2022 after putting a lot of my life on hold, hoping for a sooner date. By then, surgeries were booking out into 2023 and by then, my approval was in danger of needing to be renewed. Luckily, a spot opened up in the hospital for the amount of time I needed and I got a date for February 2023.
Because of the amount of tissue taken out, plus my chosen addition of a breast reduction (medically needed but denied by insurance), the doctor needed around 7 hours to be set aside for my surgery and an overnight stay in the hospital to monitor me after. With the date finally on the books, I began to prepare and to try to put things in order as best I could.
Details of my first lipedema surgery coming in the next blog! Thanks so much for reading!
Also, as I usually note, I share as a way to spread awareness and process what I am going through. I do not share for pity, and even though a lot of this is challenging, I am also a tough and resilient human. Also, please note that I am not a health professional and these experiences are my own though if you can relate, you may want to look into it more, advocate for yourself, and contact your doctor.