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Things That Should Be OK when Living with Endometriosis

Last updated: September 2019

I realized a long time ago that living with endometriosis means sometimes puzzling others. Depending on how expressive one is, it may involve explaining a myriad of routines or habits. My mood-swings, the flare-ups, or what I like to call “my occasional zombie face” are just some of the things that come with being me. But, just because it’s part of “my normal”, it doesn’t mean that others will understand all of my quirks. In fact, there are not even quirks, but behaviors that have developed from living with a chronic illness. Sometimes, I wonder whether I should wear a t-shirt that says “Sorry, I have endometriosis, don’t hate me” all year round.

Yes, there are a few things I do that don’t make me the most popular of gals, but really, it isn’t my fault. It's that good-old endo.

Yelling at your doctor

While it is never good to scream at anyone (unless they’re about to cross the road and you want to save their life), when it comes to doctors versus endometriosis patients, it happens more often than not. Diagnosis still takes too long, there are lengthy waiting lists, contradictory diagnoses, and too many invasive tests. A huge number of patients have had their complaints dismissed as stress. To top it all, some doctors with no clue about the disease still say things like “pregnancy cures endometriosis” (it doesn't!).

So I think it is perfectly OK to get upset, and even a little angry at your doctor. We are exhausted, in pain, and in need of effective help.

Not wanting to discuss your fertility with everyone that asks

Sometimes it’s like certain people cannot help themselves. They just want to know whether you plan to have children, how many, when, and whether your uterus is functional. It is the most intrusive of conversations and being uncomfortable, and even offended by it, is most certainly OK. Sometimes, our emotions will get the most of us and it will come out wrong, or we will let ourselves down and offer answers we don't really want to share. It's a very uncomfortable conversation, and it's perfectly normal to not know how to handle it, no matter how many times it happens.

Anyone who doesn’t understand nor respect boundaries - and thinks it’s fine to ask someone about their child-rearing wants and capabilities - should be responsible for the upset derived from it, not us.

Not fancying sex

One of the most common complaints amongst endometriosis patients is the fact that sexual intercourse hurts. I have suffered from this, it's a horrible kind of pain, and a very awkward conversation. There is also surprise bleeding, which can be terribly embarrassing when getting to know a romantic partner.

It puts a lot of pressure on any relationship. Intimacy should be enjoyable, but if it hurts you, it’s time to take a moment and talk to your partner. It requires trust, medical help and support. What should be left out of the picture is guilt. No one should torture themselves for not enjoying sex. It will affect your relationships, for sure, but your emotional wellbeing is a priority.

Sometimes, it’s OK to be a hormonal mess or a cranky bat. Others may see us as "too much" or "too emotional", but honestly, we are downright exhausted. I am learning to consider less and less what others deem acceptable, especially when I am going through a flare-up. Because until you have lived with a chronic illness, you won’t know what it feels like. My life is chronically imperfect, and so am I.

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