Love and Relationship with Lipedema

by Scott Routon as told to Christina Routon

I met Christina in third grade. She'd moved to my small town in Georgia after her father separated from the military. I was fascinated first by her hazel eyes and by the fact that she was wearing a skirt when most other girls in school wore jeans every day.

We became best friends, and on Valentine's Day in third grade Christina asked me to marry her, and I said yes.

We had some growing up to do, of course, and as time went by and I switched schools we saw less of each other. Then one day this beautiful young woman stopped her car and asked if I needed a ride. We spent the afternoon together and ended up dating for the next two years before getting married in 1990. I was 19, Christina was 18.

There was a sexy librarian-sharpness about her that intrigued me. She's one of the smartest people I know. There was something I found fascinating about her, I can't put it in words. We did have our differences and our issues, though, and while I was in the military and away from home I sent her a break-up letter. I had second thoughts, though, and called her. I couldn't imagine being without her, and I didn't want her to be with someone else, and this time I asked her to marry me.

When I saw Christina on our wedding day, she took my breath away. She was beautiful. When we did the garter toss, I did notice she'd only put the garter up to just under her knee. I didn't know why. I knew Christina had been complaining about her weight and her legs, but I didn't see anything wrong with her. I love curvy women, and I liked seeing her in dresses, skirts, shiny hose and heels. I didn't see anything wrong with her legs. They were just part of her.

Over time, I did notice Christina was gaining weight and some of the clothes she wore didn't seem to fit as well as they used to. We didn't know anything about lipedema at that time. When Christina gained weight when pregnant with our son, that's when I noticed a change in her legs. I was concerned, and I still thought she was beautiful, but we both figured that after the baby was born she would lose the weight and she'd look the way she did before. She's always had a pear-shaped, hourglass figure that I love, and I did want her to get that back.

When we moved to Alabama and Christina joined the gym, I'd never known anyone to work harder. She was going to the gym almost every day, running on the treadmill, lifting in the weight room. She and those other ladies kicked my butt in the spin class! I couldn't keep up, and that blew my masculinity to pieces. But we were both concerned when she continued working out and cutting out junk food and yet only lost thirty pounds during those two years. That was when we started to suspect something else was going on.

I'll never forget when the jerk online said something about her legs. She'd been posting on a well-known bodybuilding forum and had asked for advice about her program. Christina was discouraged because her legs weren't changing no matter what she was doing. This jerk came on the board and replied to her post, basically calling her a liar about her workout and diet and saying horrible things about a picture she'd posted on her profile page. This was one of those times I wanted to hunt someone down and hurt them they way they'd hurt my wife. She cried for a long time and came very close to giving up everything she'd worked so hard for.

This was also the event that made her want to seek out more information. She'd struggled for so many years with her weight and her legs. The way her legs looked was so tied to her self-image that it did affect our relationship and our intimacy. I've always believed she was beautiful and shapely. It didn't matter that I told her she was beautiful and I loved her shape and yes, even her legs. I hated that she didn't wear skirts or dresses anymore and wanted to hide her body from me. When she talked about seeing an endocrinologist to find out what else may be going on I supported her decision.

When Christina started taking medication and she finally started losing weight, we both had hope. I wanted her to wear dresses again. I wanted to get her a pair of boots to wear with a skirt and tights. But when her legs didn't change that much, the doctor said lymphadema. Christina, ever the researcher, began to search for answers and that led us to lipedema.

Everything she found said no cure, no treatment. I was furious, I was upset. It was unfair. It's hard to explain how crushed I was. I felt I'd never get the Christina I'd known back. I still loved her very much, but it was hard. And she'd been working so hard to lose weight and I wanted her to look the way she felt.

For Christina, it had a name and that was a relief. But I need an enemy I can fight. This was something I couldn't conquer. It was hard to accept, and I needed hope. I needed to hear something, anything, besides to accept it and get through it with God's grace. I needed to hear God can and will heal, that's there's medical treatment, something.

When Christina started the wrapping therapy, it was hard for me to see Christina go through it day in and day out, but it made me feel proactive. I felt like we were doing something and that felt good, it gave me hope, and I could let some of this anger out.

I'm still angry that there's no medical treatment or a lot of research in the United States for this. I also hate that a lot of plastic surgeons don't know about this or if they do, many won't touch it because of possible physical complications. I hate that many doctors don't know about this and continue to hurt and discriminate against women who have this disorder.

I completely support liposuction as a treatment for this, and if Christina and I have to go to Germany to have it done then that's what we'll do. Until then, we'll continue to learn as much as we can, continue to experiment with diet and exercise, and even if I have to have a pair of boots custom made, I will see Christina in a skirt and boots one day.

I’m o.k. – did I just say that?

By Tatjana van der Krabben

In November 2010 I had my first liposuction procedure. In November 2012 I had the last one of four. Yes, the last one. I’ve reached a decision: I’m done. Of course I still have bumps and bits. I’m also in that awkward spot between sizes: size 14/16.  And yet… It just stopped serving a purpose. This is me and that’s o.k.

Why liposuction in the first place
I embarked on this journey to get less pain and become more mobile. My legs had that distinct lipedema look and feel, I just didn’t expect much result in the cosmetic department. I also didn’t want that to be a factor. To me, this was strictly a medical procedure. To my surprise I got a very decent cosmetic result. It gave me more self-esteem. I was still the same, it was just looks and it mattered. Not just to me, but also to loved-ones and friends. The fact that carrying around a couple of pounds less was such a big deal in this day and age was hurtful. While admiring my new figure I told myself over and over again this was not why I did it and those stupid 15 pounds should not matter that much.

The fog has lifted                                                                                                                                           While being on a healing rollercoaster it was very difficult to see the bigger picture. Whenever I could feel what strength and mobility I regained, I was planning the next surgery that would also temporarily set me back. I postponed the last surgery, simply because it was difficult to fit into my schedule. First and foremost I’m a mother of 2 kids who still very much need my care and help. So I was truly feeling the physical benefits for the better part of 2012. Until November, when I had the last one.

I cherished the benefits. I enjoyed being more fit. Being thrown back in November after surgery on my arms made it quite clear to me: this better gives me less in pain in the long run, because for cosmetics only this is not worth it! I was in pain, hindered in my mobility all over again and recovery was sloooow. It’s been 3 months. Healing has progressed sufficiently to be able to conclude I did benefit again. I will have to fight again to regain all my strength, because I was unable to work out for over 2 months. Yet, there’s also that blissful sensation of being virtually pain free! The fog has lifted. I’ve got my bearings again.

Results                                                                                                                                                                  Size 14/16, so what? I may never have looked like a really bad case to many of you, but I was in a lot of pain. I have hypermobility. It counted for cool tricks when growing up, now it just means it’s a weakness in the system, a gateway to pain. Pregnancy set me way back. I never truly recovered. There are exercises I could do for that, if I were actually able to. But I’m not, thanks to the lipedema. I cannot pull enough strength out of my legs to support me with those exercises. Also, if the lipedema is bad like in the past, I also get more pain and mobility issues from the pregnancy souvenirs. I can do the mild exercises for that again, thankfully. I rarely drag my leg anymore. I owe that to liposuction. I can climb the stairs again, when in moderation virtually pain-free. I experience less fatigue, get more done in a day. I also experienced reduced swelling in areas not treated by liposuction. Like breaking a dam, the circulation improved. The 2 surgeries that gave the most result were the inside of my legs and my arms. They had a distinct impact on my mobility and new found energy and strength. More energy means I feel like I really need to sit down and put my feet up for a bit in the afternoon as opposed to feeling like napping.

The last surgery brought on such a painful recovery it really put me off. Did I really want to do this again? I took my time to think about it. I’ve come to realize that my butt sticks out like a sore thumb. I’ve got junk in the trunk all right! Does it hurt? Barely. Can I work around it with clothes? Yes. Would I want to risk a sagging version of it just to get it reduced in size? NO!! I have one last little thing, that’s the back of my upper legs. They were never ‘done’. There wasn’t all that much fat, but it’s quite tender. Yet, not that bad. These were the final issues going through my mind, but they didn’t bug me enough to do something about it. The rest wasn’t bugging me anymore. There’s some loose skin, which can be treated with external laser, but no more liposuction. It was o.k. - I’m o.k.

I’m not complaining it boosted my confidence. I’m generally in a better mood, regained hope to find further improvement through diet, exercise and supplements. More importantly I feel o.k. about myself, remaining bumps and everything. The only thing that could ever bring me to do it again is if menopause would make it worse again, pain included.