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5 Reasons Endometriosis Can Be Embarrassing

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Endometriosis can be 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?

1. Periods

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

Somewhere along the line, there seems to have been some unwritten rule which says 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 may think it’s normal for periods to be painful because it’s not often 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 when they are on their periods, the reality is clearly still being ignored.

2. Problems with going to the toilet

Personally, this is the most embarrassing thing with regards to endometriosis! Going to the toilet isn’t easy for a woman with endometriosis. On top of the pain and discomfort, we may 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 + endometriosis = 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. Needing to go 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’s 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 inside your body and it becomes downright painful. And diarrhea. Out of nowhere, you can have an upset stomach. You’ll spend all day wondering it was something you’ve eaten, asking those who have eaten with you if their stomachs are OK, just to find out it’s nothing but endometriosis causing it.

3. Painful sex

Not every woman with endometriosis will find sex to be painful (dyspareunia), but it is a common complaint. And given the intimacy of this subject, it can be truly embarrassing when pain keeps 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.

4. 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, it’s hard to think straight. Brain fog can make you forget what you are speaking about 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.

5. Talking about 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’ve gotten 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 all 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 the topic 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.

This post originally appeared on Endometriosis News.

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Photo via L-house on Getty Images

Originally published: December 8, 2017
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