So from 2012 to current, I haven’t lost any weight. After I stopped working out with my personal trainer (would have loved to keep him on, but it just wasn’t in the finances since it cost about 1300 euro for 6 months) I had finally gotten my jogging distance up to 10k in about 1.5 hours. I was pretty proud of myself because I was down to 270 and running farther and faster than I had before.
However, my left ankle was hurting whenever I went out jogging or even walking any long distance. So, off to the doctor I went who referred me to the fysio who told me to make an appointment with the foot doctor. In I went to find out that the ligament that runs through my ankle is all angry and inflamed because apparently I had been wearing shoes too big and I had been sliding around.
After a battle with the podiatrist for about 6 months, who wanted me to wear hiking boots over the running shoes I normally wore for everyday wear, I finally gave in and got hiking boots. What would you know, between the sole inlays and the stiff ankle in the hiking boot, my foot stopped hurting. But unfortunately, I had managed to gain about 10lbs in those 6 months so I was back up to 280. Damnit.
It was towards the end of 2012 that I started flirting with a super low carb diet called keto (probably among the only type of diet I hadn’t tried yet) to see if I could take those 10lbs off. I took about 10lbs of water weight off (I think I was a camel in a past life) and that was pretty much it. Over the years my weight slowly crept up even though I was in a constant calorie deficit and I never stopped working out.
Summer of 2014, I all of a sudden had rapid weight gain and it all went to my upper stomach.
Slowly from 2012 and starting keto, my weight crept back up to 280 but I was able to maintain that weight through diet and exercise until the summer of 2014. This is when I noticed a rapid weight gain from 280 to 295 and most of it went to my upper stomach, which is a place I’ve never really held loads of fat before. I also noticed some unusual fat buildup on my calves and thighs, but it was the upper stomach that worried me the most.
Accompanying the rapid weight gain was a total loss of strength, hair stopped growing (oddly, I wasn’t losing it, it just pretty much stopped growing), was tired easier and a lot more often, total loss of sex drive, always cold, dry skin, etc.
The loss of strength was the distressing because ever since I started lifting back in 2011, I’ve never stopped and I’ve always been proud of my gains in strength. I went from bench pressing around 50kg to barely being able to push 30kg and went from deadlifting about 100kg to struggling with 50kg.
About 2 years prior I had switched birth controls and I was convinced that it was my birth control binding all of my free testosterone and causing all of these problems. After having every regular blood test known to man for thyroid, diabetes, etc (and all of it with perfect numbers) I was passed on to the gynecologist to see what’s going on with my hormones. I’ve always suspected that birth control was the reason I had a bitch of a time losing weight and if it was binding all my testosterone, this could be the answer I was looking for.
The gyno agreed it wasn’t impossible, but to see where my actual hormones are at I’d have to go off birth control for a month before I could get a hormone panel done. So I did.
That appointment took place around October so I had to wait till November to go in and get the paperwork for the blood test.
The results are in…
One of the most frustrating thing about appointments with specialists in this country is it could take about 6 weeks for the next appointment. So once I got the paperwork for the blood test, it was November. I wouldn’t be able to get in to see my gyno for the results until January because of course she was booked solid for about 3 weeks and then there was the holidays.
However, things started happening between the day I went off birth control and the appointment for my hormone panel results. I started noticing that 30kg was all of a sudden too easy and I had to go up in weight on the bench press. My sex drive was coming back and my hair started growing again at its normal rate (while the hair not growing on my head was bad, I didn’t mind the fact that I could go months between shaving my legs so that coming back kind of sucked). Everything seemed to resolve itself, except the weight loss. Once again, I was exercising like I always have and eating 1800 calories…at 295lbs I should have been able to lose. Nope.
Well, once I got my results it turns out I have more testosterone than a woman normally has. That of course led the gyno to look and see if I had PCOS, which thankfully I don’t. However, I probably have some estrogen dominance…so we decided to try the Mirena IUD as birth control instead (that’s another story).
In January of this year I got pissed, and I mean really pissed, and went a very drastic route to lose weight…
Since my weight still wasn’t budging I was desperate. There’s something wrong and nobody knows why I can’t lose weight. If its not my thyroid, not the lack of testosterone, then it has to be my calorie intake and expenditure. This would bring me to good old fashioned calories in and calories out.
Now, it really doesn’t make sense that someone who is 295lbs that eats 1800 calories a day and burns at least 500 calories (according to my polar heart rate monitor) 3x a week and does NOT eat those calories back can’t lose weight. It’s about as illogical as simple calories in, calories out (CICO) not working. But ok, maybe I need a bigger calorie deficit. So I decided I’d go the extreme route for at least 3 months and see what happened.
I dropped from 1800 calories to 1300 and made sure I burned 500 calories A DAY. I became obsessive about weighing, measuring and tracking the last gram that I put in my mouth.
I managed to lose 4lbs only from my face, neck, back, and boobs and made myself sick.
If a 295 pound woman, who is FOR SURE eating 1300 calories a day, burning 500 in exercise which effectively makes that about 800 calories, only loses 4 pounds in 3 months there’s something wrong. I did lose another size on top so I’m now a 50/52 while on bottom I’m still a 54/56. I was crushed because I was physically ill from this experiment, plus I made things worse. Not to mention walking was becoming complete agony from the fat on my thighs making me walk bow legged. I was not enjoying life very much.
Then on the reddit keto subreddit, someone posted a link to a news article about a woman who was over 400lbs that the NHS wanted to give weight loss surgery to so she could lose weight, starting working again and get off benefits. She was adamant that the weight loss surgery wouldn’t work because she had a condition that wouldn’t let her lose weight called Lipedema. What the hell, I remember thinking to myself and I googled “what is lipedema?”.
The first picture I saw on Google Images, I saw my own legs and my husband confirmed.
When I googled, “what is lipedema?” the very first picture I saw was this one:
If you cut a picture of my upper body out and paste it to the middle picture of the lower body, you would get my body from the starting of fat folds over my knee, the puffy tree trunk like calves and the “bands” of fat around my ankle.
It took another 2 months for me to get the courage up to mention it to my husband because I thought I was being a hypochondriac. But when I showed him, he said the same thing. That could be a picture of your legs. We talked about Lipedema and back in August of this year (2015) I made an appointment with my GP so I could get a referral to the dermatologist who makes the diagnosis for this condition in the Netherlands.
I finally know what is wrong with me and why nothing I do will allow me to lose weight…
Last month I made the trip to the dermatologist hoping against all hope there’s another answer, but knowing deep down inside the wondering, investigating, trying everything to no avail was about to come to an end. It made too much sense since I have a lot of the symptoms.
Lipedema doesn’t just make your lower body and upper arms fat. It’s also painful because the bloated fat is pressing against veins and nerves putting pressure on everything. This is why for the past 8 years I haven’t been able to properly kneel or use any of the exercise machines that puts pressure on my shins, thighs, or calves.
Because of that pressure, a Lipedema patient bruises insanely easy. I had anemia ruled out 8 years ago when really weird bruises would show up on my upper arms, thighs, calves, shins…all the lipedema spots.
What should be relaxing massages on my legs and lower back have always hurt (I didn’t start getting massages until about 8 years ago) and I always thought that they were doing more of a deep tissue massage and that’s just how it feels since they’re working out knots. Since my diagnosis last month I’ve had a massage and told the person giving it I had Lipedema, which she knew about, so was very careful. It was bliss. A relaxation massage shouldn’t hurt.
I’m slightly hypermobile, which is another symptom. I always thought I was more flexible than I had any right to be at my weight.
Knee and hip problems. In the past year it hurts to walk because the fat that accumulates between my thighs is making me walk differently. I can cycle 50km no problem but walking 500 meters these days is agony.
The start of lymphedema in my legs due to all the pressure on the lymph areas.
Low vitamin B12 and D. That was diagnosed in 2009.
And of course the big one…can’t affect the areas with diet or exercise.
When I took my clothes off for the student doctor who was previously a skin therapist who used to give manual lymph drainage massages to Lipedema patients, she took one look and started going down the symptom list and every single one of them was yes. Then she said that even if I didn’t say a word she’d have diagnosed me because my lower body is a poster child for a classic Lipedema lady.
The good news is I had an answer, the better news is my veins are still ok, the bad news is there’s only management and no treatment except for liposuction which they didn’t recommend.
So that was last month…this month my husband went on the quest to find someplace that does the special Lipedema liposuction on patients with a BMI 41 or higher because it’s clear if the fat doesn’t go between my thighs, I might have 5 more years before I can no longer walk and at age 36 that’s not something I want.
PetraAnn
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