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24 Things People Don't Realize You're Doing Because You Have Endometriosis

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Endometriosis is a chronic condition in which tissue similar to the lining of the uterus is found outside the uterus, on parts of the body like the ovaries, fallopian tubes, or even the bladder or bowel. It can cause pelvic pain, inflammation and infertility – but since most of these symptoms tend to be “invisible,” it can be hard for others to really see what you are going through.

Unless you tell people about what you’re experiencing, others may not even know you are living with this disease. Endometriosis activist Sinead Smith, who painted her stomach with makeup to represent her pain, explained, “Just because endometriosis is invisible. Doesn’t mean it isn’t there!”

It is important to remember you never truly know what others are going through. That is why we asked our Mighty community for something they do that people don’t realize they’re doing because they have endometriosis. Hopefully their responses will shed some light on what it’s really like to have the condition. If you live with endometriosis, know that we see you, your pain is valid and you are not alone.

Here is what our community shared with us:

  1. “I say ‘I’m fine, it’s just cramps’… because it’s easier than ‘my PCOS and endo are in a flare-up’ and having to explain my entire medical history, only for someone to say, ‘So you have cramps…’ Most people assume it’s just cramps anyway, no matter how much I try to explain it. So I just spare myself the aggravation of trying to make someone understand who never will.” – Sarah C.
  2. “Spend more time at home without other people. I need recovery time and to be alone at home when I’m in pain.” – Adelie L.
  3. “Frequent trips to the bathroom for various unpleasant reasons, overheating easily, suddenly stopping what I’m doing (due to pain), saying I have stomach problems or feel nauseous so I won’t have to elaborate. I was actually really upset recently because I was out sick from work, but they require a doctor’s note on the third day. The thought of having to get a doctor’s note for this was very embarrassing so I just went back to work sick.” – Brooke P.
  4. “I have a heating pad and blanket at my desk at work for flare days.” – Shirley V.
  5. “Clenching my jaw and grinding my teeth, chewing the inside of my cheek and biting my lip to get through the pain. I also clench my fists and sit down as much as possible. Always guarding my tummy, and avoiding going anywhere in a bad flare.” – Ceri H.
  6. “Taking three times longer to clean my house than it should because I have to split it up through the week so I don’t wear myself out. The times it can’t be avoided and I have to do it all at once I end up on the couch for one to two days recovering. That’s why I’m always cleaning.” – Regina B.
  7. “I rub my stomach while I’m cramping. So I’ll be talking to someone and rubbing it and pushing on it and they don’t even realize.” – Kyla M.
  8. “Saying maybe to events that are around the time I’ll start my cycle.” – Trista E.
  9. “Breathing heavily through the pain. Sighing a lot. Flinching and pulling faces but hoping no one will see it all. When I get asked if I’m OK I reply ‘yeah I’m fine, just a bit sore but I’m OK.’” – Caitlin L.
  10. “Saying ‘I’m just tired.’ It’s easier to just say that versus going into details about the constant pain I’m feeling that is truly exhausting.” – Athina F.
  11. “Rocking. When the pain starts, I start to gently rock. As it grows, the rocking grows. Next is the rapid tapping of the foot, followed by the frown. I didn’t even know until my roommate told me.” – Jes M.
  12. “Avoiding anything and everything related to pregnancy and/or babies. I can’t handle any of it because it all makes me want to cry my eyes out. I feel like I’ll be in mourning for the rest of my life.” – Ginger M.
  13. “Throwing up in the bathroom from pain and come out with a smile and get on with the day!” – Anna B.
  14. “Try to protect my stomach and pelvis at all times. Being overly anxious in public, crowded places in case anyone might accidentally shove or bang into me. Also, never wearing tight jeans or trousers. I live in leggings or jeans that are far too big, in my house I live in PJ bottoms or maternity bottoms because I can’t bear to have anything tight against me.” – Robyn A.
  15. “Zoning out a lot when people talk to me. [I] don’t mean to, but when the pain gets really bad it’s all you can think of.” – Athena N.
  16. “Spontaneously yelling out in pain. I get pains that are so sharp I can’t help it. They catch me off guard.” – Vickie R.
  17. “I’m not able to hang out with my friends or boyfriend as much as I would like and they think I use it as an excuse.” – Kaitlyn M.
  18. “I don’t often travel home. I may skip out on weddings or other family events, because traveling can be really hard.” – Angela W.
  19. “I plan my whole life around my period. I get horrible anxiety the week of my period, realizing that the death pain is coming for my uterus.” – Samantha T.
  20. “I’ve noticed when I’m walking around my house (basically as much walking as I’m capable of), I feel for the walls or places to brace myself so if pain hits or I get dizzy from the pain I have something to hold.” – Genia K.
  21. “I always have meds for nausea in my bag because the pain always makes me sick, every day.” – Brume R.
  22. “I make jokes about my pain because I don’t want those around me to know how much pain I’m in because I know they wouldn’t understand. So I deflect with humor.” – Nics P.
  23. “Snacking at my desk in an attempt to distract myself from the pain.” – Lyndsie L.
  24. “Naps! I nap several days a week. I simply can’t get enough sleep at night with the amount of pain I have. I also have to lay down several times per day to allow my back and abdomen to relax.” – Kendra L.

You never know what others are going through, especially when an invisible illness like endometriosis is involved. If you are struggling with symptoms of endometriosis, check out several stories from our community below:

Originally published: March 8, 2019
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