Tuesday, September 1, 2015

Lipedema Series, Part 6: Finding Clothing That Works

Image from the blog, lipese.com
We have been talking about Lipedema, sometimes known as "painful fat syndrome" or "big leg syndrome."

In this fat storage disorder, an abnormal accumulation of fat occurs in the legs and lower body, sometimes including the arms as well.

In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

In Part Two of the series, we discussed how lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema

In Part Three of the series, we discussed the different types of fat distribution patterns, looked at some pictures to illustrate type and stage of lipedema, and detailed how lipedema is diagnosed.

In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

In Part Five, we discussed possible treatments for lipedema in detail. In order to give more detail about each option, we broke the treatments into several sub-posts:
      Today, in Part Six, we discuss practical ideas on how to cope with lipedema, particularly clothing challenges.

      In the next post, we will deal with the emotional and social impact of lipedema, how our medical care is impacted by weight bias, and how to live proactively with lipedema.

      In the future I will share my own lipedema story and also continue to write about lipedema-related issues.

      Clothing Challenges

      The extra heavy hips and legs of lipedema makes it hard to get clothes that fit. This is very trying for people with lipedema.

      Early in the course of lipedema, the upper body is often a smaller size than the lower body. That makes it hard to find clothing that works. Some women even have to go to multiple stores to fit their body, getting a "straight" size for their upper body and a larger "plus" size for their lower body.

      In the later stages of lipedema, the upper body tends to catch up in size with the lower body, so it may be easier to find things that more or less fits the whole body, or at least to shop from the same store for both top and bottom. However, some lipedema women need "extended" sizes ─ above 3x ─ and it's harder to find stores that. Often you have to order online and just hope the sizes (which vary wildly in consistency) fit.

      Certain types of clothing may be particularly difficult to find for women in the later stages of lipedema. Pants, boots, socks, and outerwear can be a significant challenge.

      Although there are many choices available nowadays on the internet, sometimes you simply cannot find what you need. To get around this, you may have to have some things custom-made for you or learn how to make do without them. Here are some resources that may help avoid that choice.


      Finding pants that fit can be a tremendous challenge for women with lipedema because their waist size is usually much smaller than their hip size and because they need pants that work with very large legs.

      In the early stages of lipedema, women can often still buy pants with non-elastic waists. They might gap a little or need some darts to narrow the size, but waistband pants still work. As lipedema advances, however, many women end up wearing elastic-waist pants because the difference in size is so significant. However, this doesn't have to mean "granny" pants; there are a number of decent options available in elastic-waist pants, or you can continue to adapt waistband pants. If you have strong sewing skills, making your own custom pants is another option.

      Many women with lipedema also need to buy wider-leg pants, which can also be a challenge. Still, there are choices; if you google "wide leg pants, plus sizes" you can find a selection available from several companies. One caution, though; some very wide-legged pants like "palazzo" or "harem" styles are not that flattering because they exaggerate leg size. "Boot-cut" pants may be more helpful in finding pants that are wide enough for larger calves and ankles without being cartoonishly large. Pants "for pear shapes" may also helpful if you carry a lot of your weight in your backside and thighs.

      Junonia.com often carries pants for pear shapes or with a boot cut. These are good quality, and some even come in different lengths to accommodate people of different heights. Making It Big, Ulla Popken, and Love Your Peaches also have a selection of "wide leg" pants that might be useful for people with lipedema. There are likely other companies as well.

      Yoga pants (made with both cotton and spandex) may be a more comfortable option than blue jeans for many with lipedema, especially if made in a loose-fitting style. However, this is not the same thing as leggings. Leggings are made to conform closely to legs, so if you are sensitive about people staring at your legs, you might consider loose yoga pants instead of leggings or tight yoga pants.

      Some women with lipedema find they need to wear their pants a bit longer than normal because the legs tend to pull up and get stuck up on the "bracelet" of fat on the calf when sitting. Then when you stand, you have to physically pull or shake the pants leg back down, which draws attention to your cankles. Getting pants with a little longer hemline helps keep the ankles covered even when sitting and avoids the awkward "shake down" maneuver when rising.

      Some women with lipedema skip the pants issue altogether by wearing only maxi-skirts and dresses, sometimes with leggings or compression garments underneath for comfort and compression. You are certainly not obligated to cover your legs with a maxi; wear whatever length of skirt you like! If others don't like it, they don't have to look.

      But the reality is that many women with lipedema are uncomfortable with showing lots of leg, or find that it is difficult to be taken seriously in a professional environment because others focus on leg size instead of on accomplishment. If you want or need a longer skirt length, eshakti.com has some great dress designs that you can customize to your personal preferences and needs (neckline, sleeve length, dress length, etc.) for a little extra money. It's not cheap, but it may well be worth it to get clothing that works for your unique needs. (Watch for their sales if you need to save money.)

      With a little creativity and searching, you can find pants that will work for your lipedemic body, and you also have the option to wear dresses or skirts of a length that make you comfortable.


      Boots are probably the most challenging clothing item for people with lipedema. If you live in a temperate part of the world, this is not a big deal; you just don't wear boots. But if you live in an area with a lot of rain, snow, or cold weather, not being able to get boots can be a big deal.

      People in the early stages of lipedema can often still wear boots if they buy wide-calf boots, although they may have to order online to find them. In the later stages of lipedema, though, even the extra-wide boots available on the internet may not work anymore.

      If in doubt, measure around the widest part of your lower leg. That will tell you whether or not you can find boots in your size. One fashion commentator states that boots generally come in 4 different sizes:
      • Standard Calf: 14-15 inches
      • Wide Calf: 16 to 18 ¼” 
      • Extra Wide Calf: 17 ½ to 20” 
      • Super Wide Calf: 18 to 21”
      A very few companies may have boots available to larger sizes. A company called widewidths.com has boots available to calf sizes of 24 inches, for example, but only for very large-sized feet. Their boots run about $300, but can sometimes be on sale for half that price. They state that they have the widest boots available online without ordering custom-made boots, which can run up to $1000 per pair.

      Because it is so hard to find reasonably-priced boots in extremely wide calf sizes, most women with advanced lipedema just don't wear boots. Obviously, this is a challenge in some climates. The lack of boots plus the tendency towards restricted blood flow in the feet may make hypothermia or frostbite a real issue for people with lipedema. That's when you have to start getting creative.

      There are all-weather sneakers that are built for extra warmth in the snow. These provide a bit more warmth on cold days. Companies that specialize in outdoor clothing, like landsend.comDick's Sporting Goods, or llbean.com will sometimes carry these. However, they are not always available in the "wide" shoe widths that some people need. Be sure to only buy a shoe that fits well.

      For very cold or snowy weather, some people can make ankle-high lace-up snow boots like these work because the fat starts at the ankle. They do tend to chafe at the bracelet of fat around the ankle, so they aren't really great for hiking or wearing long-term, and they wouldn't work for people with significant lipo-lymphedema, but some women with significant lipedema still are able to use them for short-term.

      For rainy and wet-weather areas, there are options like duck shoes. These are water-proof shoes that only go up to the ankle. Sporting goods stores may carry them. Again, they may not be available in the wider shoe widths needed by many larger people, but it's worth checking into. Dick's Sporting Goods and other similar stores often carry waterproof hiking sneakers as well.

      The sportswear company bigcamo.com carries hunting and fishing gear for big and tall guys. They do have boots and other accessories as part of their website, including "Bog Boots" which come in heights that go up only to the ankle or just above the ankle. These might be an option for people who must be out in the weather as part of their job or leisure activities. You also might be able to take a pair of these to a shoe repair store and inquire about splitting the back and inserting a gusset or lace-up area to add more room if these are close to fitting.

      Liposuction is an appealing option for some women with lipedema just so they can have access to having boots (and dry, warm feet) again. Here is the story of one woman who was able to fit into rain boots again after having liposuction.

      Socks, Nylons, and Tights

      Socks are tough because you need them for most shoes. Yet socks in the traditional heights (knee height or 3/4 socks) do not work well on lipedemic legs because they usually roll down or sag.

      In the early stages, knee or trouser socks made for larger calves can work, but may restrict circulation at the elastic top. This could be a disaster for someone with lipedema. By the latter stages of lipedema it is usually not possible to find knee-height socks that fit anymore. 3/4 socks (partway up the calf) can work for those lipedema types whose fat stops around the knee or just below it. Many people with full-leg lipedema just buy ankle socks (1/4 socks) or footie socks.

      Good wool socks can help keep cold lipedema feet warm, yet are more breathable than cotton or polyester blends. Experienced outdoorsy types know that if cotton socks get wet, they quickly lead to hypothermia; wool socks keep you warm even if they get wet. BUY WOOL if you are going to be in outdoor weather for long!

      Smartwool is a very good brand, but Darn Tough socks are even better. They even have a replace-it-for-free guarantee; I can't say enough good things about the Darn Tough wool socks.

      Both Smartwool and Darn Tough have wool socks available in various thicknesses, including padded socks for hiking, extra warm for winter, or ultra lightweight for summer. Although most people would not think of wool socks in summer, I actually find them more comfortable and cooler than cotton or acrylic socks. Smartwool and Darn Tough are more expensive than regular socks, but they are worth the expense. They can be bought via Amazon, REI, or other sportsgoods stores.

      Tights and nylons work under dresses for many lipedema women. However, in order to get them to fit the hips and thighs, you may need to get them in a larger size, even if you don't weigh as much as the charts listed for that size. Many plus-sizes stores like Lane Bryant and Catherines have tights and nylons available to very large sizes. Long underwear in men's sizes is another option for adding warmth and coverage to legs underneath a dress or skirt in cold weather.

      Of course, the best choice for leg coverings may be custom-made compression garments, which can provide warmth as well as compression for those who need it. A company called Lipedema Products has some of the best options for these because they are made in lighter degrees of compression specifically for women with lipedema, rather than the higher compression used for lymphedema.

      Coats and Outerwear

      Coats and outerwear can be difficult for people with lipedema. Many people with lipedema live in very cold or wet areas and want to stay active, but the sportswear gear in large sizes is extremely limited and can be quite inferior in quality. A larger size is often needed in order to fit large arms and hips.

      Although many plus-sized coats are now available online and in some stores, many of them are of lackluster quality. Many aren't that warm, don't "breathe" well, use inferior fabrics, and aren't waterproof or windproof. Frankly, it's still pretty difficult to find a truly good-quality coat that fits lipedemic shapes, and finding rain pants or snow pants that fit lipedemic legs is a nightmare. Look around carefully before making your choice.

      Even when quality gear can be found, it is often very expensive. Still, you never know what can be found at Goodwill or on eBay, so it's always worth checking secondhand sources if you need to save money.

      Junonia.com often carries coats and outerwear in plus sizes, as well as women's clothes. The quality varies greatly; I've gotten great stuff there, and I've gotten some very inferior stuff as well. You never quite know what you're going to get; don't be hesitant to send back inferior stuff. The good news is that it typically is cut well for women's bodies, with extra room in the seat and legs. Junonia is one of the few companies that has catered to sportswear and outerwear made to fit plus-sized women's bodies.

      Landsend.com and llbean.com also have excellent-quality coats and outerwear in plus sizes for women. However, their sizes usually only go up to 3x and tend to run small. So while some lipedemic women can shop at these companies, others will not find their sizes in the women's department.

      When you can't find your size in women's plus sizes, the secret to finding decent outerwear may be in men's "big and tall" sizes. Women of size shouldn't have to shop in men's departments in order to find clothes that fit, but the reality is that sometimes the only way to get larger sizes is to go to the men's department. Although men's plus sizes are cut for bigger bellies and skinnier legs, some styles will work for lipedemic women, so check the above companies' men's sections too.

      Columbia.com is an online company that makes good-quality outerwear for active people. Their women's sizes are limited, but their men's extended sizes often have selections available to 4x and occasionally larger. These are usually of excellent quality, but of course tend to be sized tall. You may have to have them shortened if you are vertically challenged like me.

      Bigcamo.com is an online company that specializes in hunting, fishing, and outdoor gear for larger men. They carry 4x - 8x gear from a variety of companies, and sometimes are able to hire a company to make a small run of larger-sized gear in things like rain suits. This could be another resource for some lipedemic women.

      It is a tremendous disappointment that better-quality gear is not available in women's plus sizes. Apparently, clothing manufacturers think that fat women sit inside on the couch all day and never venture outside. But women of size DO live in cold and wet climates, many DO like to go hiking, garden, and stay active, and even those who don't still have to go outside for daily life, like going to a child's soccer game in a rainstorm. Manufacturers make quality outerwear for men's extended sizes; it's about time they branched out into quality outerwear for women's extended sizes too. Otherwise, they are missing out on a major market opportunity.

      Adaptive Garments 

      For those with lipedema who develop significant lipo-lymphedema as a late complication of the condition, clothing, outerwear, and shoe choices can be even MORE difficult, especially if mobility is impaired and a walker or wheelchair is needed at times.

      There are many companies that specialize in garments for people with mobility challenges, including those with lymphedema. You can find a list of some of these companies here. Another option is to have some clothes custom-made for your needs.


      There's no doubt about it, having lipedema can make finding decent clothing a real challenge. Pants, boots, socks/tights/nylons, and outerwear are particularly difficult to find.

      This lack of access to decent clothing really hits at a woman's sense of self-esteem. It's hard enough to feel positive about one's body with lipedema; it's even worse when one can't find good-fitting or flattering clothing. It's a double blow to the ego, and sometimes it drives people to avoid others or limit their opportunities.

      However, women have been dealing with lipedema for eons. Most find ways to cope, whether that's adapting clothing they already have or having something custom-made. And really, we have a LOT more choices now in the age of the internet than we ever did back in the days of a tiny plus-size department in the neighborhood big-box store.

      The key is to GET CREATIVE. If that means searching far and wide online to find suitable clothes, shopping in the men's department, having special clothes custom-made, sewing our own clothes, or pressuring the clothing industry to better address our needs, so be it.

      Finding suitable clothing with lipedema is challenging, but we can do it. And through advocacy and raising awareness of lipedema, we can keep improving our choices over time.

      Remember, ROCK YOUR CURVES. Even with challenges, it's all about self-confidence. If you don't have confidence, fake it till you make it ─ they'll never know. It's all about the way you present yourself to the world. The difficulties of lipedema are real, but they don't have to keep you from reaching your full potential.

      *I'm sure there are many other great companies besides the ones listed above that offer clothes that might work for lipedemic women. Do you have other suggestions that have worked for you? Please add your ideas in the comments. 


      Anonymous said...

      My solution to socks? I just don't wear them anymore.

      April D said...

      I do most of my shopping at womanwithin.com - they have a lot of larger sizes and many things are available up to at least 6x. I have found wonderful pants there with very wide legs, good drape, and elastic waist. One word of caution - for pear shapes it is best to get a two piece swimsuit for the most part - most of theirs are geared toward apple shapes. Check the reviews before you buy since usually it will say which shape it fits better in the reviews. Actual measurements are listed for clothing so it is easier to find the right size also.

      Cassandra said...

      - Simply Be carries wide calf boots up to 24 inches. I ordered according to their measurements and the boots automatically come with room to spare for tucking in pants, before I even undo the buckle to release more calf space, so definitely bigger than the measurements.
      - Here is a review for rain boots where the website says it goes to 21" but they fit a 24-25in calf http://whenindoubtwearpurple.blogspot.com/2015_04_01_archive.html - the actual website, Jileon, has a decent selection.
      - We Love Colors has a plus section. The largest size fits me with a little room to spare and I'm a 28/30 at 6' tall with very large thighs.
      - Ureshii is another custom made clothing store, although the clothes are more of an investment with prices.
      - fullbeauty.com (originally onestopplus) aggregates what is available on a bunch of different plus size retailers making it easier to find sizes 28+, particularly for pants

      There are many more resources for dresses and skirts since those are more forgiving, but these seemed like the most helpful suggestions.

      Well-Rounded Mama said...

      Whoa, Cassandra, great resource! Thanks for sharing!

      I have been in the market for a good pair of rain boots for a loong time, so this is a very welcome suggestion.

      Haven't checked your other suggestions yet but thank you so much for sharing your faves.

      Anonymous said...

      http://holyclothing.com/ combines historic Western fashion with a North Indian aesthetic for gorgeous, incredibly comfortable, and long-wearing pieces up to 7X, including lots of luxurious skirts and dresses that drape and flow enchantingly without showing/outlining a lot of leg. They are not cheap, but whenever I get a little extra money I head right to this site.

      Jenny Islander