June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.
If you’ve been following my journey, you can see how Lipedema can really mess with your head. If one more person tells me I just need to be in a calorie deficit to lose weight, I’m going to lose it. I really needed this diagnosis for the validation. Hearing it from a doctor was crucial, as it would finally reassure me that this is not my fault. I yearned to understand if all the pain I endure is solely due to Lipedema or if there are additional undiagnosed disorders complicating matters. I needed to know, if this was the reason why I couldn’t lose weight.
It was I who brought this condition to my doctor’s attention, but to my surprise, she had never heard of it. Determined to make progress, I gathered every piece of literature I could find and presented it to her. After reviewing the information, she acknowledged the possibility of Lipedema affecting my legs. The texture of my legs resembled that of lumpy and bumpy skin.
Although the disease was evidently present in my legs and hips, I suspected its presence in my arms, stomach, and breasts as well. My doctor couldn’t provide a definitive answer at that time. Additionally, I was experiencing painful lipomas throughout my body, leaving both me and my doctor perplexed as to their connection to Lipedema, if any.
At the age of 41, I decided to capture some photographs of my body as evidence of this disorder. By this point, I had managed to reduce the swelling that was visible in the previous post’s photo from when I was 39 years old. The ankle cuff that haunted me at age 40, after giving birth, was no longer present. The right leg is slightly bigger and lumpier. The images clearly displayed the telltale Lipedema bruises on my legs. Dealing with the constant pain in my breasts, I found solace in wearing Shefit sports bras exclusively due to their superior support.
I had numerous unanswered questions that my doctor couldn’t address, prompting me to search for a specialist. Unfortunately, I couldn’t find any local experts. However, through the help of the Facebook community, I discovered Dr. Karen Herbst at Banner Medical in Tucson, AZ (now at The Roxbury Institute Advanced Lipedema Treatment). However, there was a significant waitlist of one year to see her.
At the age of 43, Dr. Herbst diagnosed me with Lipedema Stage 1, affecting my legs, hips, arms, and lower stomach, categorizing me as type 3 & 4. While I suspected my breasts might also be impacted, breast examination was not part of the diagnosis process. Additionally, she diagnosed me with Familial Multiple Lipomatosis, which explained the larger lumps that had formed across my body. FML is a genetic disorder, that was inherited from my father. I had wondered if the lumps were Dercum’s Disease, but apparently, Dercum’s is more painful. Just two years earlier, I was in extreme pain.
There are 4 stages of Lipedema and 5 types of Lipedema. When I was young, I was type 1. Then in my 30’s I was type 2. Then I became type 3 & 4 as the Lipedema spread. What caused it to spread in my 30’s? I ate healthy, I exercised a lot, and stress was minimal.
Dr. Herbst discovered that 60% of her Lipedema patients exhibited hypermobility. Confirming my hypermobility, she suggested the likelihood of Ehlers-Danlos syndrome (EDS) but recommended seeing a specialist for a formal diagnosis. Furthermore, she suspected I had Venous Insufficiency and advised me to consult with a vein specialist.
She noted that I had some obesity, which I didn’t understand because I couldn’t lose any weight. At the time of the diagnosis, I was actively swimming and walking, plus eating a low carb diet, without nightshades.
Finding a doctor who listened attentively and provided answers was incredibly validating.
I don’t have many photos of my legs, I usually crop them out or hide behind my children. At this point I was much more self-conscious about my arms. I wanted to show you the last photos before my 2nd pregnancy. My arms are covered, but you can see that my arms fit snug in these dresses.
It is unacceptable that I was diagnosed with Lipedema, a relatively common condition, 34 years after its onset. The average age of diagnosis for Lipedema is 48 years old, and unfortunately, many cases remain undiagnosed. If not caught early, typically during puberty, the disease can rapidly progress and become difficult to manage. This is why I am helping to raise awareness.
If you suspect you have Lipedema, I highly recommend visiting www.lipedema.org. On this website, you can request free pamphlets that provide detailed information about Lipedema and help you locate specialists. I always bring these pamphlets to my appointments with new doctors. Otherwise, when I mention Lipedema, they often confuse it with Lymphedema, a different condition that is more widely known. Alternatively, they may think I’m referring to Lipidemia, which pertains to high cholesterol. The pamphlets serve to clear up any confusion and demonstrate that Lipedema is a legitimate disorder. Otherwise, doctors might assume that I’m mispronouncing one of these other conditions.
In my next post, I will share what transpired during my subsequent pregnancy and the challenges I faced in the postpartum period when I experienced a loss of mobility.
