"Legs Like Mine" Susan's Story of Lipo-Lymphoedema

"I’ve always been a big girl but my legs were normal for my size, actually even shapely for the lower half of my legs.  I’ve always been active, enjoying hiking, climbing, dancing, yoga, and anything that can get me outdoors.  That all changed the day I came home from the hospital after delivering my son, 19 years ago. The pregnancy wasn’t a normal one.  I’d suffered with Polycystic Ovary Syndrome (PCOS), and for eight years, I tried to get pregnant under the supervision of several doctors without success.  I knew my husband desperately wanted kids and I told him to divorce me and marry someone who could give him kids.  But we didn’t give up.  I finally met a fertility specialist in 2000 that understood my situation, performed a minor outpatient surgery and then put me on an injection to aid in fertility.  I got pregnant the first month after starting the injections, used progesterone, and after a very rough delivery involving an emergency repair of a blood clot that burst, I left the hospital in 2001 with my new child, and my new leg lump, Larry.  In fact, my left leg was just slightly larger than it was when I entered the hospital. 

Over the years, I, like many mothers, did not focus on myself.  I had another child, did all the homeroom parent, basketball mom, birthday party, etc. things for years.  I was still a big girl and ended up having lap band surgery in 2007 and losing a lot of weight for me.  This is when I first got concerned about my legs.  I had been eating just very little low carb food for over a year, and walking up to 14 miles a day to prepare for the Oklahoma City Marathon.  Yet the weight on my legs was really not changing, and Larry was more prominent than ever.

Me, after losing 171 lbs., eating low carbs for more than a year with lap band, and walking up to 14 miles a day.

I gradually made changes involving not wearing shorts, hiding my legs, switching to mostly dark colored pants, and introducing maxi dresses into my wardrobe.  In fact, as a very successful businessperson, I wore a lot of dress suits, except I’d begun throwing the skirts away to goodwill before I even got the outfits home from the store.  I bought shorts to wear with bathing suits, and even bought a mid-thigh length aqua tard to try and hide my legs during the swim aerobics classes I loved so much.  I’d take my girl scouts hiking wearing jeans and deflect questions about why I wasn’t wearing shorts on very brutally hot summer days.  I was mimicking what I had seen my mother do while I was growing up. 

I had the first moment of real concern after I had taken my Girl Scouts on a trip to Savannah, Georgia, a very hot and humid city in the summer.  We’d been walking in this humid city for a few days, and were getting ready to head home after a day on the beach.  I’d volunteered to be the watcher (required by Girl Scouts) so I didn’t have to put on a suit in front of teenage girls, so I hadn’t been able to really enjoy the beach.  Someone snapped a picture of the group as we walked, and I was wearing long short pants to try to hide my legs, but survive the heat.  My legs were GIANT – very inflamed.  I knew my legs and feet hurt but had never seen a picture of how dramatic the inflammation had gotten during the trip.  I was devastated.  I thought I was doing a good job of hiding it from others.  I wasn’t.

The picture that devastated me.

I came home and started trying to lose weight that I had gained back, to no avail.  I switched to a very strict vegetarian diet and kept it for several years but my legs didn’t change.  And my left leg lump, Larry, was really hurting.  I’d self diagnosed as having a giant tumor in my leg.  Not only did I have Larry, but I’d developed things that felt like golf balls behind my knees.  This was four years ago.  I went to the doctor to show the lumps to her and try to get it figured out.  We did blood work, x-rays, two MRIs and couldn’t figure anything out.  It wasn’t cancer, so we quit trying.  Two summers later, I was getting ready to take my Girl Scouts on a trip to New York City, and a few months before the trip, my left ankle was very painful and I had to use a cane.

I went to a foot specialist, who told me I had tendonitis.  She gave me some topical steroids, sent me to a physical therapist, gave me Tramadol for the pain, and prescribed a custom brace to help me on the trip, which would involve walking several miles a day.  I could not avoid the trip, as I was the leader and had planned everything.  I was the only one who had been to New York several times and was comfortable with leading many young women on a trip like this.  I did everything I could – I complied with the therapies, ate anti-inflammatory foods, and went in for the brace.  The day I went to the brace company was the first breakthrough for me.

The doctor sent me to a certified lymphedema therapist.  She told me to wear compression, helped me wrap my leg (I hated this), helped me with options to not wrap (compression Velcro wraps), prescribed a flexi touch pump for the left leg, she did some decongestive therapies in the office, and then taught me to do manual lymphatic drainage.  She also gave me at-home exercises and swimming exercises to do.  I saw her several times and then went home to do conservative therapies. 

At this time, I went home to the computer and joined several Facebook groups for support and to learn. It was only when I started searching in earnest to learn about treating my left leg, and posting pictures of both legs, that someone suggested I actually have lipedema. 

Once I’d heard this word, I dug in more, learned more, and met with my doctor again.  She’d not heard of the condition, so I myself started digging.  I learned that something I’d thought was normal all my life – the feeling that fat cells were giant and felt like marbles, was indeed not normal.  It was lipedema fat, and I was covered with it.  Arms, legs, belly all had these nodules of varying sizes. It was LIPEDEMA, actually Lipo-Lymphedema, because my legs swell on top of the fat deposits. And, I found out it could be treated with surgery.

Thank goodness for the internet!  I dug into YouTube videos from the Fat Disorders Research Society Conferences, learning about diet, patient stories, treatments, and genetic research.  I memorized videos with speakers like Karen L. Herbst and Chuck Erlich because I’d watched them so much. I read every book published in English about Lipedema.  I poured over scientific research papers going back to mid-1900’s papers from the Mayo clinic.  And because I am a US Federal Government employee who can change insurance companies each year, I read insurance books.

I discovered one insurance company that covers liposuction for lipedema – Aetna.  So I decided I would switch for 2021 and get treatment. Towards the end of 2020, I scheduled appointments with two doctors and kept the one with Dr. Jaime Schwartz in California.  The first doctor wanted me to lose 100 pounds before even a consultation, which I felt was not possible as I’d already had lap band twice and followed a very restrictive vegetarian diet for years without success.  Dr. Schwartz was confident he could take my case.  He had numerous examples of women who had legs that looked just like mine.  Other than my mom, I’d never really noticed women’s legs that looked like mine.

Me.  2021.

I am an overachiever and a project manager working for the government by trade.  I’m ‘really’ good at paperwork and systems designed to be difficult.  I did my consult, got a surgical plan, and decided I personally would pursue getting the surgery.  The day my new insurance came into effect, I had my complete package of pictures, cover letter, forms, statements from my doctor, Dr. Schwartz, receipts for all the conservative therapies I’d done ready to go.  I sent it in to Aetna and was approved for all the surgeries on the plan in five days. 

I recognize the process for insurance coverage is very intimidating.  I recognize and see daily on the Facebook forums, women begging for diagnosis, women who’ve just heard the word Lipedema for the first time today, women who don’t know about surgery or conservative therapies, and women too ashamed to go to the doctor one more time, only to be told to lose weight, one more time.  I decided that I would be part of the solution.  I’m not a medical person, but I can write, and I can share my story. 

I started a blog, and a full social media presence centered on www.legslikemine.com, to help other women who have hidden their legs, thought they were deformed, thought they had cancer, didn’t know where to turn, or who might have given up, have some hope.  I’m sharing my story there to help.

Me, the night before Lipedema treatment surgery.

Recently my mom and I did a photo shoot.  She’s not of the health to do lipedema surgery now, but if it were even ten years ago, we would pursue it for her, so she could enjoy her body freely and not always be worried about what other people thought.  Even now, it’s incredibly freeing to understand there is a genetic disorder behind these legs and we didn’t cause them to be deformed. 

Mom and me, 2021.

I sit here writing this story a mere twelve hours before my first liposuction and extraction treatment. I’ve been blogging and sharing every step of the way.  I get emails, private messages, and comments from women who are begging me for more, and who are so incredibly grateful for the courage I’m showing to share something I’ve been ashamed of for so long.  It matters – in fact; it might be the big difference I make in the world.  Who knows?  I’m not totally certain of the path I’ll take – I know advocacy and education will be a huge part of my story.  I’m also working on some patents for boots that expand to fit different legs.  Just having this one thing can help women like me feel somewhat normal and is very incredibly important. 

I’ve embraced my body and decided to take control of this situation.  I’ve taken a lot of pictures that I would never share in the past for the benefit of other women to know they’re not alone, they’re not ‘freaks’ or ‘deformed.’  They have Legs Like Mine.