Endometriosis is embarrassing. Full stop. It involves periods, leaks, problems with going to the toilet, problems with sex, the reproductive organs, and pain. It’s not something that is easily or, often, willingly spoken about.

So, what exactly is so embarrassing about endometriosis?

Periods

Periods aren’t nice. They’re messy, smelly, make you feel dirty, and most women will have some discomfort whether due to pain or water retention. For women with endometriosis (among other conditions), periods can be extremely heavy and irregular, which can mean that pads can leak, clothes can get stained, and dignity can be lost.

Somewhere along the line, there seems to have been some unwritten rule that means you shouldn’t speak about periods. But it’s this way of thinking that has made menstruation a taboo subject. In the process, this has stopped women from discussing their bodies with their peers and, furthermore, stopped them finding out what is and isn’t “normal.” This hasn’t helped conditions like endometriosis. For something as trivial as pain, it’s hidden, and women are thinking it’s normal for periods to be painful because it’s not talked about.

There have been movements over the last few years to get women (and men) speaking about menstruation. But, with adverts still showing women able to take on the world while on their periods, the reality is clearly still being ignored.

Going to the toilet

Personally, this is the most embarrassing thing about endometriosis! Going to the toilet isn’t easy for a woman with endometriosis. On top of the pain and discomfort, we also have to deal with wetting, constipation, and diarrhea.

I have endometriosis on my bladder, and at my last surgery, my bowels were still clear of the disease. But several different parts of my reproductive system were adhered to them. Because of the endometriosis on my bladder, I suffer from incontinence. No amount of pelvic floor exercises will change this, because mine are exactly as they should be. It catches me completely off guard sometimes, and to be honest, I’m mortified by it. But I know I’m not the only one who has this issue.

On top of that, bowels + endo = ouch!! It’s bad enough that wind can make me almost jump out of my skin with the pain it can cause. But needing to actually open my bowels — the pain is horrendous. Going to the toilet isn’t something you can do before you actually need to go, so there is no way of preventing the pain. It rips through you like a stake. Constipation is uncomfortable at the best of times, but add in the pressure it can create on other organs and it becomes downright painful. Then, there’s diarrhea. Out of nowhere, you can have an upset stomach. You’ll spend all day wondering if it was something you’ve eaten and asking others who shared the meal if their stomachs are OK, just to find out that it’s caused by endometriosis alone.

Painful sex

Not every woman with endometriosis will find sex to be painful (referred to as dyspareunia), but it is a common complaint. And given the intimacy of this subject, it can be truly embarrassing when pain stops you from enjoying the moment. Endometriosis can also cause bleeding during or after sex, which isn’t pleasant for either party involved. Painful sex can sometimes lead to women completely avoiding any sexual acts.

Brain fog

Brain fog, or clouding of the mind, is common in those with chronic pain conditions and is often the result of a mixture of medications being taken. But, when you are in pain, you can’t think straight. Brain fog can make you forget what you are speaking about in mid-sentence. It can make you forget someone’s name when you have known them for years. It can make you appear to be the ditziest person in the room when you could have the highest of educational qualifications.

The subject in general

Why is it so embarrassing for us to speak about our own bodies? I mean, we’re all human. We all function (relatively) the same. But, speaking about something as private as our reproductive system and our bodily functions can be almost humiliating. The older I get and the longer I’ve had endometriosis, the less I’ve been bothered by speaking out about anything that is involved. In fact, I want to shout it out to the world because we need this awareness. However, I do still find it an embarrassing topic and I do occasionally find myself actively avoiding it with certain people. It can be especially problematic in the workplace. Trying to explain the inner workings of your body to an older, male boss can be particularly difficult.

You can follow more of my journey over at www.emlwy.com.

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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.