Life with Lipedema: Dealing with Your Diagnosis


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An official lipedema diagnosis can feel dreadful.  Here are some helpful hints to cope with your diagnosis and steps to take for living with the chronic disorder.

No one ever wishes to hear a doctor utter a life-changing health diagnosis, especially something as bewildering and frustrating as lipedema.  However, there’s no shortage of tips on helping lipedema sufferers manage their symptoms while maintaining their mental composure through it all.  If you’re experiencing lumpy fat in the legs that hurts, skin swelling that is tender to the touch, bruising, and a progression of asymmetry in the structure of the legs, including painful “knee knocking,” freezing feet phenomenon, and difficulty maintaining an active lifestyle, you most likely have lipedema and/or lymphedema.  The sooner you receive an official diagnosis from your doctor about this often misunderstood and commonly maligned disorder, the sooner you can carve out a customized treatment plan to help regain your quality of life.

Listening for that Dreaded “L” Word:  Preparing for Your Diagnosis

Lipedema was first identified in 1940 at the famous Mayo Clinic as a congenital condition that causes the body to abnormally produce, accumulate, and deposit adipose (fatty) tissue in the legs, thighs, hips, and, in some cases, the arms.  Unfortunately, the chromic condition is uncurable, though advancements in non-invasive treatments, as well as innovative surgical interventions, have made those living with lipedema more manageable.  Most lipedema patients can easily self-diagnose their fat deposition disorder through online research, but it’s the official medical diagnosis that will ultimately free them of guilt, indignity, and confusion.  Those specializing in vascular dysfunction and plastic surgeons are usually the go-to medics who typically diagnose the disease.  Once you receive your diagnosis, it’s important to remain open-minded to various treatment options going forward, possibly get a second – or third – opinion, and accepting your condition as a life-altering one.  Although life with lipedema will definitely be different and challenging at times, it doesn’t have to control you.  The important thing to remember is you should always remain in control of your condition, regardless of how physically debilitating or mentally anguishing things could get.  You’re going to have your good days and you’re going to have your bad days.  Keep in mind that lipedema doesn’t define you.

Here are some steps to take that will help keep your condition in check and things in perspective as you go forward with life as a lipedema patient:

  • Seek a Support System

Enlisting a close-knit circle of trustworthy friends, family, doctors, therapists, and even lipedema advocacy groups, that you can connect with and confide in will really help when the going gets tough.  You’re never alone.

  • Seek Treatment

Once you’ve been officially diagnosed, the treatment journey commences.  The sooner you get on a treatment plan, the better you will begin to feel – both physically and emotionally.  While there is no definitive cure for lipedema, it’s your responsibility to find the time, financial resources, and mental fortitude to committing to a customized treatment trajectory set forth by you and your doctor.

  • Seek Structure

Learning to effectively balance everyday life with a consistent treatment action plan will undoubtedly be challenging.  Adhering to a structured routine will exponentially help keep you committed to managing your condition.  There will be days when you simply will not want to wear your compression garments or become frustrated with fatigue, so this would be a good time to seek solace from that support system we discussed earlier.

  • Give Yourself a Break!

Lighten the load off your shoulders.  You’re doing the best you can with what you’ve got.  No one is perfect, nor does anyone do everything they’re supposed to be doing 100% of the time.  If you mess up one day by not wearing your compression wear or have a mini mental meltdown in the middle of the supermarket, it’s not the end of the world and there is always tomorrow.

Living with Lipedema:  One Patient’s Story

A long-time Total Lipedema Care patient offers some firsthand, sage advice to those seeking a diagnosis and tailored treatment plan.

“I have long suffered from body image issues. Through the years, I have been on more diets than I can count. These diets did not seem to have any effect, and instead led to the development of an eating disorder. I noticed that my lower extremities were my “problem areas” early on in college. The problem only worsened during and after my pregnancies. 

After my last pregnancy, I developed hip pain, tightness, and flexibility issues which were bothersome. Progressively, over the last two years, I began to experience more pain in my lower extremities- especially in my feet and ankles. It became painful to stand for a prolonged period of time. Even walking around the house was painful. Because my pain was predominantly in my heels, I was diagnosed with plantar fasciitis. I went through many rounds of physical therapy, wore special shoes with orthotics, but nothing seemed to improve the situation. The pain was affecting my lifestyle. I was unable to work out, dance, or take walks with my family. I began to fear taking vacations, for fear that I wouldn’t be able to participate in the planned activities.

It wasn’t until a physical therapist was stretching me and palpated a nodule in calf that I began to think if the pain could be attributed to something else. I did some research and learned about lipedema. As a doctor, I admit I had never heard of lipedema before. I learned that many of the symptoms that I had could fit with the diagnosis. I had fatigue, pain, decreased mobility. This search led me to Dr. Schwartz, who confirmed my diagnosis. I have had two stages of lipedema reduction already.

My life after these surgeries has dramatically improved. I am now able to walk 3 miles without pain. I am able to be on my feet for a large portion of the day without my feet aching at the end of the day. I also feel that my flexibility has increased somewhat. I no longer feel the sadness I felt when I couldn’t participate in activities with family and friends. 

I am so thankful to Dr. Schwartz and his staff for giving me back my quality of life which lipedema had taken from me. Lipedema reduction is not a cosmetic surgery.  Lipedema is a true medical condition, and surgery is an important treatment that can improve the lives of many women.”

If you’re ready to take the step in getting officially diagnosed and evaluated for a lipedema treatment plan personalized just for you, be sure to contact our office to speak with one of our highly skilled, compassionate representatives who can set up a consultation with Dr. Jaime Schwartz.

To learn more, please contact our Beverly Hills, California office to schedule a consultation with any of our highly trained specialists.