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:: This column was originally posted on Endometriosis News ::


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 is so embarrassing about endometriosis?

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

Somewhere along the line, there seems to have been some unwritten rule which 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 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 also have to deal with wetting, constipation and diarrhoea.

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. 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 diarrhoea. 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 that 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 stops you 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, you can’t 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.

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S.