I have been medically misdiagnosed…FOR YEARS.
I have been struggling with fluid retention and swelling for years as well as gaining weight. Before we jump into this post, I want to make it very clear that I take full responsibility for gaining any weight. Even if medically something is wrong, I know weight gain is something I am struggling with and in no way am I blaming anyone or anything for that. Now, with that being said, there is no way to tell how much I have gained from just weight gain and how much my body gained from what is going on with my body. We will get into that later in this post.
I will link a post HERE if you want to read more about the fluid and swelling issues I have been having.
I felt something was wrong
I have felt something was wrong with my body for a long time. I was rapidly gaining weight, felt my body become more swollen by the day and the way my body looked…I just felt something was not quite right. This did not feel like normal weight gain. My body did not look like normal weight gain.
I went to doctor after doctor trying to get help and to try to get some answers. They all told me the same thing. You are retaining a lot of fluid. We don’t think weight loss is the answer. You have some characteristics of Lipedema but we don’t think you have it. I do not know how to help you…BUT try losing weight and we will go from there.
Why is weight loss the only answer?
The answer I was left with was basically weight loss will not help but lose weight anyway. I have something wrong with my body and you don’t know what it is but all you can say is lose weight. It did not make any sense and I did not get any help or support for what was going on.
I was shamed, put down and criticized for my body. I was told how awful it was that I gained weight after I worked so hard to lose weight. I was told I should be ashamed of myself and that I need to find motivation again to lose weight. During this time I was doing my best to lose weight. I was on WW, went back on Jenny Craig, counted calories, counted macros…I did everything I could to try and lose weight and it just felt like no matter what I did, I just kept getting bigger and bigger. I felt more uncomfortable and in more pain, daily. The shape of my body was drastically changing and I did not know what to do.
This has been going on for years. I was told I have characteristics of Lipedema, have a severe fluid retention problem, weight weight loss won’t help, but lose weight anyway. Finally, I had enough and I found a specialist who specializes in Lipedema, and fluid issues and has helped several patients whose bodies looked like mine. So I made an appointment to see him.
Finally got some answers, A New Diagnosis
This Doctor listened to me. He heard me. He respected me. He took one look at my legs, the banding on my arms and the fluid all around my body and immediately diagnosed me with Lipedema. A disease that I have been asking about for YEARS and been told for YEARS that I have characteristics of it but don’t have it. He told me that you do not need all of the characteristics in order to have Lipedema and that a lot of doctors want to blame this on the patient being overweight and tell them to just lose weight…even though weight gain has nothing to do with it. Hearing this made me feel relieved and heartbroken at the same time.
What did the Doctor have to say?
The doctor told me weight gain is a side effect of Lipedema. That the weight I have been feeling like I am rapidly gaining is not real weight gain, it’s from the Lipedema. He told me no amount of weight loss, calorie counting or restriction would have fixed this. He told me the weight gain was not my fault. That is when I began sobbing in his office. I have spent years hating myself. Hating my body. Wanting to go to drastic measures in order to lose weight. Working so hard at weight loss. Only to find out there was nothing that I could have done. Once the Lipedema starts spreading in your body there is no stopping it.
What is Lipedema?
Lipedema is when fat is distributed in an irregular way beneath your skin. As the condition progresses, fat continues to build up and your body becomes heavier. Over time these fat cells block the vessels of the lymphatic system and cause fluid buildup.
I will link an article HERE which goes into more detail about Lipedema if you are curious.
What is next?
The next step for me will unfortunately be surgery. I will need to have several procedures to break up and remove the Lipedema and help the fluid move properly. It is now not only affecting my legs and arms but my hips, stomach, and back/ butt. So I will need several surgeries on my whole body to help with this condition.
The Lipedema in my body is at a pretty advanced and developed stage so it is going to take a lot of time and procedures to break up and remove the cells and get everything working properly again. The surgeon thinks he will be removing a lot of weight from my body. I am very anxious and scared and nervous about these procedures but I am also relieved that I finally have someone who knows what is going on with my body and that we have a game plan as to moving forward.
One step at a time
I will be having surgery number one soon. We will be starting on the front of my legs and going from there. I will keep you posted, and updated and share this whole journey with you. As I find out more, I will share more. Thank you for the constant love and support. It means the world to me. We got this!