I’ve Developed Some Strange Habits Because of Endometriosis

I’ve Developed Some Strange Habits Because of Endometriosis
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I’ll start this column with a confession: I am a strange person.

It’s not that I consider myself special or unique — I can’t be the only one whose idea of heaven involves strawberry milkshakes with fries. However, I tend to describe myself as “perfectly normal” when the reality couldn’t be further from the truth. If you watch me closely, I engage in some very peculiar behaviors. And most of these habits are closely linked to my chronic illness. 

My endometriosis affects every aspect of my life: morning habits, dietary needs, nighttime routines, even how I sit. After living with endometriosis for a few years, I have developed a series of practices that feel completely normal to me, but can seem quite strange for anyone unaffected by this disease. 

Following are some of my peculiar habits:

I hate sharing a bathroom.

Who loves taking turns and sprinting to the toilet when it is free? Not only do I hate this, it causes me a great deal of anxiety. Before going with friends on a holiday that involves sharing a bathroom, I will obsess about it for weeks. If someone mentions camping, thoughts of communal restrooms will send me down a spiral of despair. My anxiety will manifest in sweating and an unbearable amount of pressure on my chest.

The fact is that I live with symptoms that sometimes make me run to the bathroom. The thought of someone being in there when my body decides to “implode” is my version of a nightmare come true.

I check every chair I’ve sat on.

I do this not once, but twice. Because heavy bleeding will make it through any moon cup, pad, or item of clothing I’m wearing, I check every surface my butt lands on. I will even do so when I am not bleeding. 

I take my hot water bottle to the movies or on public transport.

My pelvic pain kicks me in the butt more often than not, and when I need an extra bit of comfort I have been known to fill up my hot water bottle at home and carry it with me wherever I go. I get puzzled looks every time. Yet what baffles me is why don’t I see more people doing it, because my hot water bottle is my preferred form of pain relief.

I decide that some foods aren’t good for me but eat them anyway.

Many dietary restrictions that others swear by make no difference to me. Since overdoing it with painkillers years ago, my stomach became extremely sensitive to certain inflammatory foods. Sometimes I am bloated just because, even when I avoid the foods that tend to trigger my discomfort.

It’s no surprise that I sometimes wonder what’s the point. That’s when I break and dive face-first into the biggest pizza I can find, which is definitively not gluten-free. 

Avoiding inflammatory foods can be beneficial for endometriosis patients, so I wish I could be stricter with my diet, but it turns out I am human after all.

Writing about my strange habits feels akin to sharing my darkest secrets, but I know I am not alone in this. 

What are your peculiar habits? What are the things you do that others would consider strange? Please feel free to share in the comments below. 

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
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Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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10 comments

  1. Lauren says:

    Oh my gosh, I identify so much with every single one of these “strange” habits because I do each and I every one. I really feel you on the bathroom anxiety. Cath and I talk about it all the time, especially in reference to office bathroom situations — nightmare indeed!
    I have to admit, I’ve never carried my hot water bottle with me but only because it never dawned on me that I could.
    Thank you so much for sharing this! xo

  2. Kira Terry says:

    I have horrid bowel symptoms. I go to the loo once, it is difficult like ejecting a brick, but the result is tiny. In the time it takes for the coffee machine to run sudden waves of burning flames cross my bowels and I rush to the loo. This can then happen several times. Luckily I have an understanding boss. I work part time and am often late because of this but I make up my hours in the week. I wonder how I will cope in any future jobs as I worry that any new boss will not be so lenient.
    I have been checking my seat since I was a teen, long before I knew what endometriosis was. My hot water bottle is also well travelled. I have also made changes to my diet, dairy is now a no go. Thank goodness for vegan alternatives.

    • I still avoid dairy as much as I can, and I am super happy vegan alternatives are so readily available now 🙂 I so understand your every word. Thanks for reading and taking the time to comment 🙂

  3. Kathleen says:

    Thank you! All habits are very relatable. I never realized how much I checked my seat until I read about it today. White cloth couches, sheets can be terrifying!
    I was diagnosed with endometriosis 5 years ago and so much in my life has changed since. That said I have always had the kind of stubborn personality that would cause me to bulldoze through life and I’ve adapted and I refuse to let endometriosis hold me down. For slightly better and way worse. My bladder, joint and inflammatory symptoms have evolved some strange habits:

    -Stashing green and herbal tea and a small pharmacy in all my purses, luggage, carry-on, car, family/friends’ homes

    -Buying other supplies for friends/family’s homes. Like, pain cream, heating pads, panty liners, stretchy pants, for when I need to evacuate my skinny jeans, oh, and more tea.

    -Planning a day out and about completely based on bathroom locations. I usually only have minutes to empty my bladder before there is an inflammatory domino effect on my bladder and surrounding organs which makes my belly swell up like an obese watermelon. I also carefully chose restaurant tables and concert seats base on bathroom vicinity.

    -Organize clothes and jackets based on whether or not I can wear them during a flare-up. Elastic waist on this side, oppressive pants on that side.

    -Heated seats are the only specs that matter when car shopping.

    -Ignoring laundry, messy home, farm chores to save my health for upcoming events or efforts. With some serious ninja mind tricks, I might add! Then having to convince a surprise visitor to my house that I was not burglarized, or had a police raid, I’m practicing self care, I have to buy groceries in two days.

    Honestly I could go all day, but not without the risk of over sharing.

    Thank you again for the great read!

    Cheers from Canada,
    Kathleen

    • Thank you so much for reading, and letting us know of your own “strange” habits 🙂 I do the tea-stashing too, and the day out planning. OMG the joys of a good elastic waist is something I should write about 😉 and I only discovered heated car seats this last year, how wrong is that?! Healing tech! Oh Kathleen you have brightened my day. I feel seen and understood and that feels brilliant x

  4. Terry says:

    I love my children alot. I need to be there for them. I would like to have pizza even once in a blue moon, but itll cost me too much….in pain and regret. This shitty endometriosis turns to cancer whenever it wants to, so try taming it as much as I can. I’d like to say I am the boss of it, but even being a boss is not enough to control the uncontrollable. So I tell myself, my family needs me right now. So I pass on those delights….

  5. Joy says:

    I have suffered similar serious times over many day each month. Many operations, lots of adhesions. My bowel, bladder, stomach and lungs involved. Taken many different drugs which I can knowlonger take. Damaged digestion and pancreas. A new diet no lactose or gluten. Pain continues in Lungs, pelvis, bowel and bladder issues in emptying, walking. Sleeping issues.
    Take painkillers to cope with use of Tens machine, heat.
    Didn’t manage to conceive even with IVF. Had to leave my career, lost my relationship. Longterm depression. Now 61yrs and no sign of the disease stopping. Yes it’s slowed but the damage and symptoms serious.

    • Thank your for reading, and sharing your experience Joy. I am sorry this disease has been so tough on you, it really affects every aspect of our lives. I can identify with so much of what you say. I hope you’re taking care of yourself x

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