My Journey Thus Far With Lipedema and Lymphedema

This is going to be your story –  or at the least parts of this story will be similar to yours, your family members, a best friend, or a loved one. Years and years have gone by having these conditions and full well knowing that is what was wrong with me but yet no one wanted to diagnose the condition, except mention weight loss was the only thing I needed.

A little weight history: Having always been heavy from a young age, I learned to watch my body and recognize pain versus fat pain, or things changing that could not be explained. Up until I was about 26 I had decent control over my body. I would have swelling and at this point I didn’t exactly know what the conditions were. The swelling was maintained until I hit the high number of 700lbs. Then I got down to 500lbs and was swimming a lot to help reduce the pain and swelling. I would have a fall that would change everything the year I was 26. Right before Christmas that fall happened, and because I did not want to be in the hospital during the holidays, I did not go in to be seen. The swelling on my left leg kept going and the pain became unbearable so off to the little town hospital I went, where I would spend about a week with “possible blood clots”. Of course, due to my weight, no tests were confirming any of that because they were not running tests, just blood work. Long story short this fall would change the shape of my body from then on. 

I suspected I had Lymphedema. I tried to act according to the things I found online about it. I tried talking to my primary to no avail. I started to gain more weight, the swelling in that left leg got worse and my thighs and my belly also began to swell. The swelling was one thing but the pain was something altogether different and life altering. My mobility was getting worse and worse. I began to gain again and before the year was out I had gained 200lbs. Things in my life were changing during that time and I began trying to lose weight and fight for mobility. Ages 26 to 29 were a constant test of restraint and determination. 

Now this is the part to read carefully – my what I believe to be just lymphedema at the time did get better during the time I was losing weight. However, I do not think it was due to weight loss but in fact the exercise I was getting, especially the amount of time I spent in the pool.  I had a life and lived in the hot south where I was able to spend a large amount of time in the water which became my life. I was also going to college via the internet and in a long distance relationship. 

At the age of 29 that May, I moved to Long Island and the way I handled my health, weight, and life would again change. I was no longer able to have access to a pool or temperatures to want to go to a pool. My exercise at that point became walking. I walked on a treadmill, around my apartment, and eventually around my neighborhood. During  this time my weight would begin to come off. I went from 650 to 550 in a short time. This is when I noticed the tightness and soreness of my upper legs. I noticed that the swelling in my legs had started to come back quite often. Especially after sitting for even short moments of time or when walking or doing any form of exercise. The swelling in my left leg became the prominent issue, and the size difference would soon become very significant. At this time I did not have insurance, and I did not have a general practitioner. Soon that too would change. 

Due to other complications with my health I was hospitalized and was in and out for a short period of time. Thankfully in that time I was able to get health insurance and was on my way to getting better. I begun going to gyms. I tried so many before I found a gym called La Fitness that I loved. I found so much comradery and support form the workers and the other members who you begin to feel like you know if just by faces. I was 33 and I had lost a lot of weight but my body was in so much pain. My belly was holding fluid, my thighs had  both grown. I was left wondering how in fact was my body shrinking everywhere but my thighs, why were they getting bigger?? Why is the pain concentrated there when every doctor I have ever asked keeps telling me if I lose weight my legs will be fine and my pain would go away. 

At age 33 when I was 400 lbs I had a weight doctor agree to give me a panniculectomy. This was to help me get rid of the constant skin rashes, swelling in my belly, and ultimately so I could exercise more and get my legs in shape as I was still being told that weight loss was the answer. Fast forward a year later to 2012 (350lbs), and still my thighs are just as big as before. Yes the hanging belly was gone and from what I could tell the swelling from my hanging belly just moved to my hips , butt, and thighs. 

Life would have its ups and downs for the next 7 years . My weight would go up to 500 but I had endured a broken spine, a car wreck, heart issues, and moving almost every year, sometimes twice in one year. Life was nuts in a crazy way. My body, my  mental space – it was all suffering. The one constant was the size, the pain, and the no results no matter what I did to try and work my legs out. 

In 2018 I would move to Massachusetts with new insurance, new doctors, and new ideas. I had found a number of people online that were outspoken about their lipedema or lymphedema (and sometimes a combination of the two). When I realized that I honestly didn’t know which one I had, I felt desperate to get an answer. My weight was staying the same but then covid hit in 2020 and I felt everything hit pause which caused depression and loneliness. My weight shot up to 640lb and the pain in my legs were at an all time high. The swelling was so bad I could not stand with my legs together. My walking was being taken away from me by the swelling and pain. The pressure of the swelling on my knees was unbearable. In the middle of 2021, however, I finally stood up to my GP and afterwards she told me that I didn’t have lymphedema because my legs were not discolored. I can not tell you how little faith I have had in her since she told me those words. So I decided to take ahold of my life and prove to this doctor she was wrong. I demanded a referral so I could see a specialist that could diagnose me or tell me that I was wrong. 

Do you hear the bells? I did the moment I walked into the PT’s office. She took one look at my legs, hips, and feet and told me I had lymphedema! After more questions and examination she found that I had lipedema AND lymphedema! That was a shock. I had no idea that I was fighting two ongoing battles, not just one. So my sweet and amazing physical therapist is certified in the lymphatic system. So she is rightly qualified to help me with my problems and not push me off to yet someone else. Guess what? She looked at me and said, “This is not because of your weight. This is because you have lymphedema and lipedema. This will get better with compression, exercise, and correcting what things you put in your body. This will not go away sadly but it can be controlled”. Praise THE LORD. 

If you are wondering…. I cried… I cried a lot. FINALLY someone diagnosed me and has set me on a path that will cause me to have less pain and maybe, just maybe, I will get my mobility back. I have missed out on so much this past year due to the lack of mobility. As I sit here today typing this, I feel the swelling and the pain. I know I have to get up and move. I know I have to wear my compressions and I know that I have to work for this freedom. However, now I am not alone. I have a team. DON’T ever give up on yourself when you know something isn’t right. I know some battles are easier than others. I too struggle with some health battles due to the nature of them. But there is nothing to be scared of, this is a non judgment disease. It isn’t just fat. It isn’t due to being fat. It is an issue you have that can be controlled. Do not sit home suffering when there is relief out there. 

Comment below your struggles with pain associated with lipodema or lymphedema, or share if you know someone dealing with it. I’d love to hear your stories! XOXO, Evie