Three times was the charm -- and I'm one of the lucky ones!

Most people have a feeling when something isn't quite right with their bodies. That was the case with me. For several years, I had lower legs that felt heavy, bruised easily, and were painful. The swelling was way beyond what I thought was normal, but for years I didn't have health insurance, so I didn't get to ask a doctor about it. I knew something was wrong, but I wasn't a medical professional, so I dismissed it. Except all the troubling symptoms never went away -- they only became worse.

Last year, my husband and I finally got health coverage thanks to the Affordable Care Act (ACA). I made an appointment with the usual doctor we went to, even though it seemed more like a cattle call than a place where physicians took the time to listen to you and ask questions. During my exam with the doctor (a male doctor, incidentally), I mentioned that I was troubled by the out-of-control swelling in both of my lower legs. I even pulled up my pant legs to show him. H took a quick glance and dismissed it. I felt awkward and silly. Maybe it was all in my head and it was simple edema, I reasoned.

Unhappy with the lack of patient and physician connectivity at our former doctor's office, I grudgingly searched for a new doctor. My husband had a nice physician, and he recommended that I give her try. Unfortunately, she wasn't taking any new patients, but I gave a new doctor a try that worked in the same medical practice. Her name was Dr. Sarah Boyce, and (ironically) she had been an English major before deciding to go to med school. As a writer, this made me smile. Not only did she know about medicine, she knew what a dangling participle was!

I met with Dr. Boyce several times and liked the way she dealt with me as a patient. She listened to me, considered everything I told her with a reasoned (but kind) assessment, and asked more questions. The first time I mentioned my lower legs, she thought that maybe walking more would help. That day my legs were swollen, but they weren't at my worst. After I had left her office, I decided that I needed to show her what my legs looked like at their worse so she could see what I was concerned about.

Months later, armed with pics on my smartphone, I went for a follow-up appointment. On that day, my legs were bad off, which I was happy about because I could show her in person how drastic my lower limbs looked. After seeing both my legs and checking to see if there was pitting edema, she referred me to Penrose Hospital Rehab so they could find out what was happening and get to the bottom of things. Dr. Boyce listened to me, wasn't dismissive, and recognized that something wasn't right with my legs.

My physical therapist at Penrose Rehab is named Lil, and I liked her from the beginning. She had over 20 years of experience with people who had venous insufficiency, lymphedema, and Lipedema. After being measured, poked, prodded, and questioned, Lil told me that everything pointed toward Lipedema, but that Dr. Boyce would have to look officially at the results and diagnose me. Lil explained what Lipedema was and told me that Manual Lymph Drainage (MLD) and compression garments for my lower legs were the suggested ways of managing the condition.

According to Lil, the disease was incurable and likely due to genetics. Diet and exercise (which is always a good thing to anyone) wouldn't cure Lipedema. A person could lose weight and exercise till the proverbial cows came home, but the painful adipose tissue wouldn't go away. As Lil said, Lipedema could only be managed, not cured. At least not now. I hope that will be the case in the future.

Although Lipedema has been around for 75 years or more, most physicians aren't even aware of the disease and do not know how to recognize it. If they see large limbs, they simply pronounce the patient overweight and tell them to exercise more or eat less. Except that's not the problem. Lipedema is not obesity or having extra weight. Instead, there's infected and painful adipose tissue that will keep growing and making the limbs bigger unless it's managed in some way.

Some women never find out they have the disease, so 1 in 10 women suffer from Lipedema, but many have no clue what it is and neither do their doctors. While it is a rare disease, according to the National Institutes of Health (NIH), what makes things even worse is that medical professionals don't always recognize it.

There are specific symptoms for Lipedema. These include such things as easy bruising, painful appendages, heaviness in the affected limbs, bilateral, non-pitting edema, a negative Stemmer's sign, and a band (or shelf) that separates the Lipedematous limbs and the feet. For lack of a better description, it looks like you have slipped a fat suit over the limbs that are affected by Lipedema. You may be a size 6 up top, but from the hips and below you may be a size 18! This disproportionate distribution of adipose tissue is one clue that the person may have Lipedema.

Europe is familiar with Lipedema, and countries such as Germany are far ahead of the US in treating the condition. One expert in the US is Dr. Karen Herbst, who has a clinic in Arizona. If you suspect you or someone you know might have Lipedema, do yourself a favor and find Dr. Herbst online and read her writing on the disease. Then locate a medical professional in your area who has knowledge of Lipedema. You may have to search a bit, but doctors who are in the know are out there to assist you.

It had taken me three attempts before I received a proper diagnosis. I had to remain determined and keep asking questions. But my persistence paid off, and I finally received a proper diagnosis from a health team that assessed me and found out what was wrong. Don't give up! It's your body, your health, your well-being. As a patient, you deserve answers. Do whatever you must do to get them.

Disclaimer: Please note that I am not a medical professional. I have Lipedema and have read and researched the condition. My posts are not meant to offer medical advice or a diagnosis. If you suspect you may have Lipedema, consult a physician who is familiar with the disease. I am not responsible for any decisions you do or do not make regarding your health or lifestyle. Do your research, verify information, and seek out answers from qualified professionals. 

Improvement with Manual Lymph Drainage & use of compression garments

WARNING: YOU MAY FIND THESE PHOTOS UNCOMFORTABLE OR DISTURBING. 

So, this is a big reveal moment for me. I've been hesitant to do so until now, for obvious reasons. I'm posting a photo of how my legs looked BEFORE I began therapy for Lipedema last year, in addition to a pic I took today of how my lower legs look after I've worn compression garments. Both of my lower legs are affected, with the right leg *always* worse than the left for some reason.

Things to remember:
* This is a rare, genetic disease; it is not curable at this time. You can only manage it with therapy and compression garments to keep it from becoming worse.
* This is NOT the same as regular edema.
* This has nothing to do with weight; you can be a size 0 and still have Lipedema. Your legs will look like this, although your body will remain smaller above the waist.
* You cannot get rid of Lipedema by dieting, exercising, or taking medicine (because there is NO cure at this time).
* It's also characterized by bruising and pain/pressure in the affected limb.
* Lipedema was discovered 75 years ago, in 1940.
* 1 in 10 women have Lipedema. Most don't know they have it.
* I'm at Stage 2. The stages go from Stage 1 to Stage 4 -- the latter is where you don't want to be!
* In severe cases, patients lose mobility or may need to have their limbs amputated.

Before beginning therapy for Lipdema in fall of last year.

Today's pic of one of my legs. If I don't put my compression garments on, my legs will begin to fill with lymph fluid and will once again resemble the 1st pic.

I was referred to Penrose Hospital Rehab last year. My physical therapist, Lil, has 20+ years of experience treating those who suffer from Lipedema and Lymphedema. I have been wearing compression garments (from the knee down on both legs) and have gone through Manual Lymph Drainage (MLD) therapy. It's made a difference (see photo at right). Now, once I take off my compression stockings, my legs will begin to fill with lymph fluid again and will look more like the pic on the left. 

On a good day when I wake up, my lower legs look about half this size. Some days they look almost normal, save for the band of separation between the calves and my ankles/feet (you can see this band, or shelf, in particular in the right-hand pic). That's one symptom of Lipedema that separates it from Lymphedema, as well as a negative Stemmer's sign.

Since 2011, I've lost 73 pounds using the Weight Watchers points system. I did it to gain energy and feel better -- my husband loves me regardless of how much I may or may not weigh. I did it for me so that I could accomplish more. Even after losing so much weight, my Lipedema is unchanged. It's just as bad as it was before -- that's because DIET AND EXERCISE will not cure this genetic condition. This is not obesity, this affects skinny women, too. It's suspected that it may be an inflammatory disease connected to a hormone disorder, but medical researchers aren't completely sure of what truly causes Lipedema.

If you are unlucky enough to have Lipedema (and secondary Lymphedema, as I have), you're stuck with it, and that totally sucks. It messes with my head and my self-esteem. I will never wear dresses or shorts again. The embarrassment and humiliation I feel is often overwhelming.

But this is the hand I've been dealt, and I'll use it to raise awareness and educate people about this relatively unknown condition. I'm still Bev, I'm still the same me I've ever been, and this is yet another challenge I'll face. Judge me by who I am inside, not by how my Lipedematous legs may look. I'll be okay; it's the women who have Lipedema who don't know they have it or know what it is that concerns me most.

Some women can have Lymph-Sparing Water Assisted Liposuction (WAL) in Europe and parts of the US. The procedure removes the diseased tissue from the legs. Unfortunately, many insurance companies will not cover WAL because they classify it as cosmetic surgery, rather than surgery that will help a person become immobile or possibly face amputation as the disease worsens. As we all know, if insurance companies can avoid paying for surgeries, they will.