Designing a Home with Stage 4 Endometriosis
In this babylon, the least we deserve is comfort. Something I've come to understand since moving into my own space is that home design, for me, is never purely about aesthetics. Every decision I make, what I sit on, what colour I paint a wall, how high a shelf is, how cluttered a surface is, has a layer to it that goes beyond how things look. Because my body is involved in every single one of those decisions.
I have deeply infiltrating stage 4 endometriosis. My cervix, rectum, and sigmoid colon are fused together. It is also present on my sciatic nerve and my iliac nerves. What that means day to day is bowel pain, rectal pain, pain from sitting on hard surfaces for too long, and pain from physical labour. I once tried to paint a room by myself and ended up in a flare. I built my desk and ended up in a flare. On top of that, I have fibroids... ten of them. My flare ups are triggered by inflammation, which can come from food, but also from stress. The state of my environment is not separate from the state of my body - it's often one big....messy, painful thing.
I'm sharing all of this openly because there are a lot of us. A lot of us living with endometriosis, adenomyosis, fibroids; conditions that have been minimised, misdiagnosed, and dismissed for years, often at the intersection of medical misogyny and racism. Many of us have had to figure out how to live in our bodies, and in our homes, largely without guidance. So if that is you, this post is for you.
I've only been in my house a few months. I am nowhere near having it exactly how I want it or need it. But I'm already making decisions that are about more than how things look. Here is where I'm at, and some things I'm thinking about going forward.
Cushioned Seating
I found some dining chairs in a charity shop for £3.99 each. Four pounds. Goes without saying that I couldn't leave without them. The only problem is they are extremely hard, and hard seating is something I genuinely cannot do without suffering the painful consequences, so I've had to invest in seat cushions. I've only got one at the moment because I bought it to test the colour first, but the plan is to get them for all the chairs.
I can also only stay seated for short periods at a time - if I sit for too long on these hard surfaces, I get endo flare ups, namely stabbing pains and spasms!
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Toilet Stool
These are a game changer. Especially if you're like me with some sort of bowel disorder, it helps. It's an essential piece of kit for me. I highly recommend these if you don't have one; your digestive system will thank you :D
Medicine storage
I have little medicine crates both upstairs and downstairs in my house. If you deal with flare ups of any kind, you know that they don't discriminate and they can kick you in the face at any time! If I get caught short, there's always somewhere on that floor that has the painkillers I need. I also have to take a dienogest pill every night and if I'm downstairs on the sofa, I don't want to haul my arse up the stairs to fetch them, so I keep some in the side table in the living room.
Access to heat therapy
I have hot water bottles and deep heat rub as I often get muscle pain as a result of endo affecting the nerves on the right side of my body. Having access to heat methods on both floors is massively helpful, because like above...dragging myself up the stairs when I'm in pain is a no go. IYKYK! Nightmare material.
Warm Colours
Colours make us feel things, they can affect atmosphere, our moods, our peace etc so I've been extremely conscious of the colours I choose to paint my rooms. I've started with the rooms I spend the most time in, electing warm dusky pinks, rich browns and terracottas. I'm planning on painting the catio area green to mimick a jungle/rainforest, as all of these colours allow me to relax.
For those with endometriosis, stress can cause flare ups. Being tense or on edge can cause flare ups, so the psychology of colour played a massive part when selecting colours to surround myself with in my living space.
Herbal teas on tap
I got the lemon, the chamomile, the sleepy teas, the peppermint, the green teas... I try to drink these every day which means I end up drinking them once a month or so but they really help soothe things when I remember they exist.
Hand-held shower head
Now we all know that a lot of us can't stand the rainfall shower situation, but I genuinely can't deal with it. On a sensory level and a physical level. Hand-held shower heads provide the flexibility I need to get to certain areas when I'm having difficulty standing upright and what have you. When I finally get the money to renovate my shower room, I'm gonna have the rainfall attachment removed altogether.
If you're based in the UK, Plumbworld have a decent range of accessible bathroom/shower products. Click here to take a look at their accessible products.
Low lighting
I'm autistic and have ADHD which alone sponsors my disdain for big lights, but it also gives me headaches and causes discomfort which then leads to....yup, flare ups. So I have quite a few lamps dotted about the place, and I only ever turn the big light on when I'm looking for something. Ironic, because the image of the lamp makes the light appear bigger and brighter than it actually is in real life, ha!
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These are the things that I've adapted within my living space that have made a significant impact, and there are more things I'll have in place once I clear my credit card debt, but hopefully there's something helpful in here for those of you who have chronic pain conditions, disabilities and access needs. Tiny tweaks can make all the difference.
