early-lipedema-diary

[early-lipedema-diary]

Whoops!

I said I was going to be updating in September and then grad school started kicking my butt.

I did take a picture though, and just measured again. After a month of using the vibration board every day, I went down to 22-22.5, meaning I lost an inch after staring! I haven’t been using it very consistently this month (maybe once a week), but I still maintained the thigh measurements.

So yeah that’s cool! I’m definitely going to keep using the board, and I’ll likely stay on low dose T for a while. Still debating the supplements since I’ll have finished my bottles soon. Maybe I’ll keep using the ones I can buy from my grocery store and nix the Amazon ones.

I’ll post my before and after, sorry for the extreme lighting difference but I usually keep my house in relatively low light

Slight difference! But that means it is working to start slimming them down. I’ll have to commit time again now that I’m more used to my schedule, so fingers crossed I can lose a couple more inches on them.

[early-lipedema-diary]

so funny story… (hormones pt 2)

I was over babysitting for my friend today while she worked (the psych np I mentioned who specializes in trans care) and we planned to talk about low dose testosterone after she was done for the day.

Well we started talking and both ended up coming out to each other as non binary. We were both each other’s first person we told besides our life-partners. It was an increasingly funny conversation because our thought processes were so mirrored, and were feeling similar pronoun ideas, etc etc.

After that wonderful coincidence, we talked about my idea for taking a low dose of testosterone. She also started taking T (her husband is trans and it’s something she knows how to manage). She said she was having a good experience with it. It was giving her more energy, she was finally able to develop muscle, and the cellulite she had had gone away quickly. We talked about potential fertility issues, but recent research (from university of Rochester, funnily enough, where we live) had found that taking testosterone was potentially beneficial for people who struggled with fertility and IVF. Sounds good all around to me, and I’m happy to guinea pig myself.

She gave me her bottle of T topical gel since she switched to injection (and I told her I didn’t want to do injection, I can barely take bandaids off by myself). We decided on a really low dose, about 1/3-1/2 a pump, so the bottle says that’s about 10.13mg once a day. We’ll see how it goes on the low dose and I might go up to a full single pump (you can do up to 4 pumps, which is still less than someone fully transitioning FTM).

All the potential side effects I’ve read and we talked about I’m so meh blasé about. Increased body/facial hair growth - I’m half arab so I’m already dumb hairy and am used to the maintenance. Increased libido - I’m ace with a very low libido and a life partner who is not ace, so I’m sure a boost in that would not be the worst for us. More energy - please and thank you. Increased aggression - I’m on multiple antidepressants and am very hard to anger so that should be manageable. And deepening voice - sweet, when I hear my voice in recordings, it kinda pains me how high pitch it is.

This is nowhere near the dose to transition, nor am I planning to, so I’m pretty happy to test this out. I did my first dose today, so I’ll keep you updated.

[early-lipedema-diary]

Estrogen and hormone therapy pt 1

Changes in estrogen are the most likely cause of development and progression of lipedema. There is obviously some other genetic marker at the core for deciding if you will yes/no be affected, backed by the fact that the disease seems hereditary (my mom suspects my aunt, my dad’s only sister, also suffers from lipedema). But estrogen is what starts the ball rolling and makes it get worse.

This is why this disease is almost exclusively AFAB. It usually appears during puberty when your body is boosting estrogen production to start developing the body (breasts, body hair, menstruation, etc.) This is also why it’s rare in AMAB, since their body focuses on testosterone production. If they have low testosterone and high estrogen, that would cause the development of lipedema (if they have whatever is that base genetic marker).

But the kicker with lipedema (based on research I’ve read) is that it’s all based on CHANGES in estrogen, not just increases. So it gets kickstarted by puberty, a time of extreme hormone changes and boosted production. I got my period at age 12, and I noticed the changes in my thighs (and got extremely self conscious and rarely wore shorts) at age 13. It seems kind of hit/miss if it gets worse during pregnancy, since I believe, compared to puberty, the hormone changes are more focused on first developing the fetus and then body changes of the mother (breast increase for milk production, changes to the body to accommodate baby, etc.) I’d be interested to survey in the fb groups I’m in if the progression of lipedema during pregnancy was affected by the gender of the baby (if moms with girls were worse off because of estrogen boosts than moms with boys with testosterone for development).

If lipedema only progressed due to estrogen increases, you would think it’d be one and done after puberty and pregnancies. But, at least from what I’ve noticed on the posts on the fb groups, it seems to get worse during menopause as well, with this being a much more common experience. And menopause is caused by decreases in estrogen and progesterone, not increases. Making lipedema based on CHANGES. Great.

I’d need to reread some studies to see if I can figure out why doctors think this happens, but I haven’t looked much into menopause since I still have at least 15-30 years til I need to worry about that.

It also seemed (from what I’ve observed in the fb groups) like a lot of the women in later stages of lipedema were also struggling with obesity. This would make sense because obesity causes increases in estrogen. So more fat is causing some of these women to progress to later, worse stages more often than women with lower body weight.

The main reason I typed all this out is what I’m going to discuss with one of my best friends, a psychiatric NP with focuses on care for trans people. When I first had this thought, I couldn’t find any research so I’m going to pick her brain about it sometime this week:

I’m curious what would happen to the AFAB body with lipedema if you use a low dose of testosterone. My thinking behind this is that AMAB almost never develop lipedema, and only do if they are low testosterone/high estrogen. So would taking testosterone potentially decrease lipedema? We’re going to do a hormone panel on me and discuss maybe trying this out.

It’s a weird thought I had, after finding no research to tell me what happens to the AFAB body while taking testosterone (other than changes experienced by trans FTM, but that’s a much higher dosage)

I’ll write a follow up once I’ve discussed with my friend, because I brought this up to her and she got very excited, but wants to talk in person rather than text it out (fair.)

[early-lipedema-diary]

This thing with collagen,

So everyone already knows collagen is one of the major recommended products with skin care. It helps with skin elasticity and such.

Since there’s so little confirmed treatments for lipedema, and everything is based on speculation and small scale early research, I find myself reading through a lot of these studies. Growing up with a doctor parent and being obsessed with learning the reasonings behind medical conditions and treatments gave me a pretty good basis for parsing through these dense papers. The lipedema ones especially are interesting to read because none of the conservative treatments suggestions would really do harm - it’s all about healthy lifestyle, compression, and MLD. Supplements have no guarantee to do anything but there’s research on them that makes it worth a try, and the supplements recommended by doctors like Dr Herbst are needed by the body in some capacity anyway.

Back to collagen: so one study I read was looking specifically at the structure of collagen fibers in the bodies of people with lipedema and the control group of people without (with a wide variety of weights and stages). They found that people with lipedema had more distance between collagen fibers than people without, which would likely mean a weaker structure, and more room for fat cells to suck up fluid into. In my head, it’s kind of like someone without lipedema has skin with more compression upon the fat and muscle underneath, and a person with lipedema has less compression against fat, allowing the fat to move around with more room, developing that uneven bumpiness. I really hope that makes some sense and that I understood the study’s results correctly.

So I already had some biotin+collagen in my vitamins and protein powders, but I wasn’t taking like a set regular amount. A few days ago, I bought a “deep tissue collagen” supplement. I thought that sounded like it would move through my body differently than applying topical skin care or the amount in my multivitamin. It was another one of those things where it can’t hurt to do.

My thighs had been looking weirdly bumpy after doing the vibration plate for a week and a half. It seemed like the fluid was moving upwards because I was noticing a much more developed calf muscle than I was seeing before. But that meant fluid was pushed up against the already thinner spots where the lipedema fat was accumulated in. I brought it up to my partner and he said “hmm yeah I guess it does look bumpier”

Fast forward to today, 3(?) days of taking that collagen supplement and my partner came home while I was doing MLD and commented on how smooth my legs looked. It felt really good! I make sure to say my observations out loud to him because he helps notice any changes that I might be too caught up in body dysmorphia to feel excited about.

Also, my legs were down a half inch yesterday! 23inches baby. I’ll ignore the fact that they were back up today to 23.5 but I was running around all today. At least I remembered to wear compression socks like I’m supposed to.

Other side note/tangent: I enjoy wearing leggings and socks as much as the next person, but being told I need to wear these “all day every day” makes me feel very limited in what I can wear. So probably what I’m more likely to do is try to wear the compression socks as much as I can under jeans and such, but only wear the compression leggings when I’ve either decided on an outfit with leggings or am at home. I’ve just never been a leggings every day kind of person unless I’m either rather depressed or am nannying, meaning I’m constantly bent over, crouched, picking up children, etc. aka the worst activities to wear jeans or an unwieldy dress/skirt.

I’m just happy to hear my partner comment on my legs looking smooth! Since I’ve been obsessed and he’s graciously been putting up with my rambling (though it’s a very equal exchange, his hobbies/interests are more consistent and regular level of excitement, mine are fewer and more intense).

[early-lipedema-diary]

so since lipedema fat is extremely resistant to diet and exercise, I swapped out my leg exercise YouTube videos for basic exercises on the vibration plate. I also added core/ab strengthening and… ouch. I thought I was in pretty good shape, but I didn’t think about how I had only focused on “leg slimming” videos and cardio before I learned about lipedema, so my abs have been severely neglected.

besides that it’s good for back pain (which I have) and overall health, I also wanted to work on strengthening my abs prior to getting pregnant. this will be a pretty big head start because my partner and I am not planning on trying for a few years, but core strength is key to preventing diastasis recti and helping to “bounce back”. Postpartum body weight shouldn’t be important, but I think it’d be better for my mental health to give myself the best chance of healing correctly before I’m worrying about taking care of a baby.

I’m also in general interested in how long it takes to develop muscles. I’m starting from a relatively low body weight excluding my thighs, so it might be a fun personal experiment to observe these body changes. I’m already giving my legs the best chance they can get, so I might as well work on the rest of my body too.

I want to post a progress photo of my body, but the only changes are the 5lb loss and a falcon tattoo on my stomach (lol). My legs are still measuring at 23.5 inches, which is expected but also disappointing…

I’ll probably plan to post a picture with updated measurements at the end of September, which would mark 3 months. Some studies I read about conservative lipedema treatment reported changes after 8 months, so even if nothing has still changed by the 3 month mark, I’ll have to push myself to not give up until at least month 8.

[early-lipedema-diary]

So vibration boards…

They are so fucking expensive. Online, the cheapest ones seem to be about $200. Oof. So I’d recommend you do what I did: check out Facebook marketplace for a used one. I managed to get mine for $70. The woman I bought it from said she only used it for about 2 weeks before deciding she didn’t want to keep using it.

You’re supposed to start slow, like 5 minutes at a time. I… did not do that. Today as my first day, I was on it for about 45 minutes. My knees hurt and I’ve got a headache, but it wasn’t as tiring as everyone made it out to be. I did not even break a sweat. I think those recommendations are for people who aren’t working out at all and this is their first physical activity in a while. Since I was already doing about a half hour of cardio and light strength training, I’ve at least got the initial stamina up.

I was more worried that I was going to have a vibration allergy due to the texture sensitivities I have from ASD. It can apparently cause extreme itchiness in people. But I didn’t get that! So I just ended up going for a long time (I was watching KennieJD’s latest Bad Movies and a Beat so I was on the plate until it ended).

I will probably swap my more intense cardio and leg videos for this instead. Those exercises were working because I have developed some decent thigh muscle, but because the lipedema fat is so stubborn, I’m worried that muscle development will end up just making my legs look even bigger. Considering I didn’t see any fat reduction from the regular work outs, I think I’m okay to just swap it for lighter exercise on the vibration plate.

But seriously, if you want to try a vibration plate, just try to buy it used on Facebook marketplace.

[early-lipedema-diary]

one month check in

So it’s officially been a month of me implementing lipedema treatment measures in an effort to make a guinea pig of myself. Throughout this first month, I’ve been adding more of the new conservative treatment methods.

I started the month at 132lbs and each thigh at 23.5 inches (my waist is 26in and I’m 5’4 as reference). I first added a caloric deficit with meals every 3 hours and 40ish minutes of exercise a day. I then added various supplements recommended by Dr. Herbst and Manual Lymphatic Draining 1-2x a day. Next was adding compression garments, then diosmin lotion and dry brushing during MLD time.

Today I’m at 125lbs, with my thighs still at 23.5.

I’m not really surprised I haven’t lost any inches on my thighs since that’s the whole kicker of lipedema. Almost untouchable by exercise and dieting. I do wish I had made more observations of my thighs at the beginning to compare to now since my memory isn’t very good. But the fat on my thighs feels more squishy? And also seems to have a slightly less bumpy texture.

I’m planning on giving the supplements about 3 months to have any effect. That’s typically what doctors recommend for medication trials if there’s no bad side effects.

I decided for month two, I would add a vibration board. Vibration boards are often recommended for encouraging lymphatic drainage and they are also supposed to burn more calories than regular exercise alone (so you do exercise on the vibration board). I’ll make a separate post about my first day of using the vibration board.

Onto month 2!

[early-lipedema-diary]

My Medication and Supplement List

What I decided to take is kind of a lot, but I’m honestly too impatient to test them out one at a time and slowly add up. My body typically shows any side effects I’ll get rather quickly, but I also typically have very few side effects to medication.

Besides lipedema, I am also treating Hashimoto’s Disease (with low, but within range hormone levels), depression, anxiety, chronic pain, pudendal neuralgia, and vulvodynia. Surprisingly, before I started this lipedema rabbit hole, I was already taking or looking into taking some of this list.

My prescribed medications:

Duloxetine

Tizanidine

Amitriptyline

Bupropion

My over-the-counter medications, vitamins, and supplements:

Multivitamin for women

Probiotic + prebiotic

Butcher’s Broom

Slow release iron

Selenium

Super b-complex (with added vitamin c)

Turmeric/curcumin

Magnesium

Zinc

Thyrocsin

Guaifenesin

As I start to (hopefully) see results, I’ll work on reducing the amount of supplements I’m taking and to see what I need to use to maintain any progress.

Also as a note, I’m someone who drinks a ton of water. Like probably 80-100oz/day on average, if not more. I also eat very few processed foods, so my current habits probably put me in a better position to metabolize these products. I would also check any overlap with the products you take to see the Daily Value Percentages, since too much of certain substances can make you sick (and some your body just expels leftovers). The thyrocsin product I bought, for example, includes high amounts zinc and iodine, so I’m cutting back on certain dosages so as not to overwhelm my thyroid.

Make sure to also check for any drug interactions of your current necessary medications with products. I have an all clear from my primary care provider, and I get blood tests every 6 months to check my thyroid anyway.

Now to just hope at least some of these are helpful in this shenanigans!

[early-lipedema-diary]

Why I’m doing this

- To improve my feelings towards my body image. I don’t want to keep going through cycles of self hatred, disordered eating, and resignation anymore. It’s not about numbers on a scale or the tape measure, it’s just wanting to feel comfortable in my body.

- To prevent it from getting worse. I’m in an early stage where I’m not in pain and it hasn’t fully spread to my calves or upper arms.

- For my knees. I have patella femoral pain syndrome, and I foresee later stages of lipedema putting unneeded extra pressure on my knees.

- In case, later in life due to hormone changes, it tries to progress. My partner and I want to have a kid in the future, and lipedema can get worse during pregnancy. And since I’m AFAB, I will go through menopause, which is also a life stage that lipedema can progress during.

I don’t want this diary to encourage anyone’s disordered eating or habits. I also have mental health problems that I take medication for. My end goal is not a specific body weight, nor to starve myself to a body ideal. My body type already does not really fit into beauty standards but I don’t care about that. My partner has never expressed disinterest in how I look (quite the opposite, since he enjoys how my butt looks lol). And while I’m limiting what I’m eating, if I have a craving I’ll follow it, and I won’t punish myself for eating things. I just want to see what happens with these changes.

[early-lipedema-diary]

Here is my progress after a week of Self Manual Lymphatic Drainage, in combo with diet/exercise and the supplements I’ve listed before.

Before

One week later

I tried to make sure I did the same spot based on my tattoo. The lighting might be affecting the results, but it looks a little better to me!

Leg measurements so far have been stubbornly at 23.5in for the last few months (compared to my 25-26in waist). But I’m hoping by the fat balls smoothing out, it might be more receptive to exercise.

I don’t know. I’m trying not to feel delusional or be promoting woo-woo treatments. I just hope my Guinea-pigging myself can provide some kind of solid information to someone else struggling with lipedema and body image.

…

The previous posts were retrospective up until this point, since before I was only documenting my progress in the notes app of my phone. But I am officially caught up to present day.

Onto week 2.

[early-lipedema-diary]

My current treatments based on research I’ve done on lipedema.

(Before you take any supplements, please check in with your doctor to see if it will affect any medications you are on. I am currently on duloxetine, amitriptyline, tizanidine, and bupropion. I checked in with my doctor and got the a-okay to use the supplements I started)

I am eating at a caloric deficit, every three hours to keep my metabolism up. I am basing my food choices off an anti-inflammatory diet (but I allow wiggle room, both because I love cooking/eating, and my partner has Crohn’s disease so eating high fiber food can destroy his intestines and literally has put him in the hospital before)

I workout every day for 40min - 1 hour, a mix of cardio and leg exercises (I use Elizabeth Chu’s videos on YouTube - these are the first videos I’ve used in a while that actually make me break into a sweat)

I am taking the following supplements: women’s multivitamin, super b complex (includes vitamin c), selenium 200mg, butcher’s broom 470mg

Twice a day, I do Self Manual Lymphatic Drainage on my legs, using my guasha because I have a stupid amount of texture sensitivity caused by neurodivergence and my hands get textured-out when doing the massage. This takes about 20 min each time.

I wear compression shorts for a few hours each day, typically after I’ve done MLD and exercised. (I bought SKIMS high compression shorts, because they were the most affordable option)

*** Again, I am not a professional in any way. I am basing my treatment decisions on what I’ve found while researching and what won’t harm my body if it doesn’t help the lipedema ***

[early-lipedema-diary]

Hello! If you’ve found this blog, you might be trying to determine if you have lipedema. I’ve only just started treating my thigh fat with the assumption this is what I’m dealing with.

I am a 26 year old AFAB (I am nonbinary but for the sake of this disease, I am a woman). My current weight is 132lbs and I’m 5’4. I am biracial, arab/white.

Since I went through puberty at age 13, my thighs have been extremely disproportionate to the rest of my slim frame. It has caused a stupid amount of harm to my self esteem, causing increased gender dysphoria and bouts of disordered eating. Overall, it has not been a fun experience.

I have tried many different exercise and diet regimes, but even as my weight has dropped down to about 105-110 pounds, my thighs have always been much bigger.

In my latest frustration moment of how, despite exercising every day and eating at a caloric deficit, I was not losing any weight on my thighs, I started doing research about specifically stubborn leg fat.

I came across images of lipedema, and saw pictures almost identical to my own body.

It was both a moment of relief, yet increased frustration. Lipedema is a disease where fat deposits on typically the legs (sometimes upper arms) is unresponsive to diet and exercise. This is because the fat deposits are lumpy/ball-like, rather than smooth.

If your legs look like above, and you’ve never been able to reduce their size, I recommend trying this as a test: on your thighs, pinch a portion of your skin together to look at the appearance of fat underneath. If the texture stays smooth and bouncy, it isn’t lipedema. But if it looks like this:

See that small lumpy texture? That’s lipedema. (At an early stage 1, most likely)

Lipedema is a fat disease likely caused by big hormone changes at different life stages. Think puberty, pregnancy, menopause.

Now, this discovery was frustrating because (and I’m sure you’ve been doing your own research), lipedema is incurable. And rarely diagnosed. Yay.

Because this is a “fat disease”, physicians either rarely know what it is, or they’ll tell you it’s just fat. If you’re overweight, it’s because you’re fat/obese. If you’re a *heathy* weight (I’m ballparking terms just based on BMI numbers), you can’t have lipedema because you’re not fat. But this can affect people of all sizes. It almost exclusively affects AFAB, but AMAB can be affected to, typically if they’re suffering from low testosterone and high estrogen.

There is also very little conclusive research about lipedema treatment. For many people, especially in later stages, the only *treatment* is liposuction. And that is expensive and comes with its own slew of problems.

So I’m creating this blog to explain what I’m trying, as I’m doing it. This will be only anecdotal, and I’m the only one doing this *trial*. I’m not your doctor, I’m not a fitness trainer. I’m just trying things as I find them, and maybe I’ll find information that will be helpful to someone else.