Tell Me Again How Lipedema Isn’t a Serious Health Issue

As you know if you’ve been reading my posts (sorry about not really keeping things up to date!), I’ve been having some serious back pain.  This pain started showing up in spring 2015 and slowly seemed to get better through my liposuction procedures as the weight came off my body.  Until I had my stomach liposuction in March 2017.

I suspect there’s probably a good 13-15 liters of fat on my stomach pre-liposuction and my surgeon took almost 8 liters off.  Have you ever seen a limb that’s being held back and then once it’s let go it whips back to its original position.  That’s kind of the effect that taking 8 liters off my stomach did.

For years the fat on my stomach made me lean forward.  Once a large bit of that weight was removed, I was suddenly able to stand up straight.  However, my back wasn’t prepared and went “nope”.

Since March of last year I went from specialist to specialist trying to figure out what was going on with my back pain.  I can cycle for kilometers upon kilometers pain free.  I can lift weights just fine except if I do hip thrusts, planks or straight leg dead-lifts which seems to aggravate the situation.  I can hike up a mountain relatively pain free but the moment I try to walk from the car to the grocery store I can barely make it and have to sit down every few meters to relieve the cramping pressure pain that creeps up.

I had a MRI and aside from one disk that is slightly dehydrated (but shouldn’t be bothering me till I’m 60 or 70) my back is perfectly fine.  Lots of lovely marbled muscle back there as well.  The neurologist and neurosurgeon can’t find any reason for this pain to be happening.  The vascular surgeon also couldn’t find anything that should be causing me this type of pain.

Finally, early this year I ended up at a sports doctor.  This is a type of doctor in the Netherlands who deals with athletes and active people who have issues revolving around their mobility and function in their sport.  After going through my history, she did a few tests and pointed out something that nobody else pointed out.  My glutes don’t function very well.  My left side is the worst of the two (this is also where all pain originates from) and is barely responsive.  My right is a little better but not by much.

Huh.  That’s weird.  I’ve been doing squats and dead lifts even before I was diagnosed with lipedema, granted I didn’t have much ROM (range of motion), but I did them.  The glutes have to be firing, right?

After getting my stomach liposuction last year, I finally got full range of motion for squats, I could do regular dead lifts AND walking lunges.  The glutes have to be firing, right? However, when thinking about it, after almost a year of having full ROM my butt is just as flat as after my butt liposuction back in 2016.  While I can lift more, or do more walking lunges, my butt doesn’t seem to have filled out any.

I started seeing a manual therapist (kind of a chiropractor and physical therapist) that specializes in backs and spines and my back was in bad shape.  The muscles were too strong and held my spine in a position that made things hurt.  After showing him before liposuction pictures, he could see why my back was the way it was and I went through about 5 weeks of therapy to soften up the deep muscles along the spine and make things go where they should go.

He’s on vacation for 4 weeks so now I’m with a sports physical therapist.  The first session was eye opening because it turns out my quads are super strong (no shit, they’re pretty huge from lifting and cycling), my hamstrings are pretty strong, and my lower back is pretty strong (as evidenced from the MRI).  Also, my abs are pretty strong though I can’t say my whole core is good because some of the stabilization muscles aren’t firing how they should.

At the end of the day my quads, hammys, back and abs have been pulling double and triple duty and have let my glutes become utterly lazy.  So lazy they don’t really fire when they should.  Let me tell you, after trying to learn to get them to do their part these past 2 weeks, it’s clear that they rather just sit back and watch everything else do the work instead.

When I showed the PT my before pictures, she could see what went wrong.  I didn’t have the ROM so I moved the best way I knew how with my bulk.  My legs were huge and because of the fat between my legs, I had to move abnormally so like the borg, my body adapted.

Now I have to relearn how to walk (after 2 years I still waddle because that’s how it’s always been), I have to relearn how to engage my glutes, I have to relearn how to walk up the stairs.  It’s painful and there’s a long road ahead.  Thank god I have a level of fitness already because if I was starting completely from zero… I don’t even want to think about it.

After my last PT session I started to think about how lipedema has affected me and how insurance and the medical space doesn’t really take it seriously.  How I’ve had to sink over 20,000 euro into surgeries with 1 more still needed to get rid of the rest of the fat on my stomach for a grand total of 8 liposuction procedures.  How insurance told me it was cosmetic.

WHAT

THE

FUCK

IS

COSMETIC

ABOUT

WALKING?

What’s cosmetic about waddling because there’s not enough space for my legs to move normally? What’s cosmetic about having to walk on the sides of my feet? Or my back hurting from the weight and now from the lack of weight?

It pisses me off to no end that I can’t just do my thing.  After paying thousands of euros NOW I have to spend hours a week in therapy to relearn how to be a normal human being and to hopefully at the end of the day live pain free.  Oh, and I only have 52 therapy sessions a year that my insurance will pay for.  Right now I’m at 1 a week but that’s probably getting upped to 2x a week next month.  Then I’ll have to start paying for this too.

I already pay for a massage therapist to work on the knots these malfunctions cause so I can have the strength and stability I need to do my exercises (knots take so much power and strength out of your routine).

This has all come about because of lipedema.  Don’t let anyone tell you that it’s “just cosmetic”.

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