What Not to Say – Endometriosis Edition

During the time since I have been diagnosed with endometriosis people have felt the need to share their words of wisdom. Now don’t get me wrong some of the advice I’ve had is genuinely well received and helpful for example maybe you should slow down a bit in life or maybe you shouldn’t drink 2 cans of Diet Coke a day but some of it is either ridiculous or just plain offensive. I myself am not someone who takes things too much to heart so this blog isn’t me moaning or hating on these people. It is more to spread awareness to people who do maybe make these comments to others with the condition who may be quite hurt by them.

Endometriosis is one of those conditions that is misunderstood and many women fight for many years for treatment and support from medical professionals so I am very passionate about spreading knowledge and supporting my fellow endometriosis warriors.

Isn’t it just bad periods? 

I have personally had this so many times I can’t count. I have actually explained the following to the same person 3 times and then they still ask me again, like it doesn’t sink in or they just don’t listen to me… who knows? But no it is not just bad periods, endometriosis is the lining of your womb growing outside of your womb and then bleeding and scarring repeatedly every single month creating scar tissue, adhesions and generally messing up your insides. Yes it does make periods excruciating but it also makes many other days of the month excruciating, some women are actually bed bound and are in agony all day, everyday eating painkillers like smarties. I honestly wish I just had bad periods…

Why not just get a hysterectomy? 

Another one I’ve heard many times, barely anyone who doesn’t have endometriosis knows really what it is but they still recommend you have all of your female organs removed as a cure or have a friend who had another gynaecological condition and had a hysterectomy and is now on the olympic running team. For one if endometriosis is growing on my bowel then taking out my womb is about as helpful as a chocolate teapot and secondly having a hysterectomy comes with a whole load of other issues that maybe I don’t want in my thirties like menopause and osteoporosis. Please leave the life changing surgical recommendations to the surgeons.

I’ve heard pregnancy will cure it why don’t you try that? 

This one can be incredibly hurtful to so many women with endometriosis. It is said that up to 50% of women with endometriosis have trouble conceiving and many spend years having fertility treatments often without success so suggesting that they just get pregnant to cure their condition is very very unhelpful. Many women also suffer from multiple miscarriages so I do think speaking to someone with endometriosis about them specifically getting pregnant should maybe be left until they open up that discussion. On a personal level I have never wanted to have children and many of the people who have said this to me are aware of this so thinking that now I have a chronic illness suggesting that adding a child into the mix of that seems quite unproductive really.

Can’t you just take a painkiller? 

Questions like these make me wonder if I maybe portray myself as someone who is unaware of the world around me. Like the person asking honestly thought I had not considered taking pain relief for my pain. I do appreciate the thought as they have taken an interest in how I am feeling which is nice of them but still I really want to respond very sarcastically with “You know what I’ve been in pain for 15 years and I just never thought about it”.

Being in a bad mood and someone blaming it on hormones 

I know this happens to women in general but for me especially with endometriosis I get it so much more. There are certain people who I literally cannot be anything other than lovely without them mentioning my condition. Yes this frustrates me greatly and I have even resorted to making sure I am always lovely just to avoid the further rage caused by their comments. But in general just avoid bringing up hormones if someones in a bad mood, don’t invalidate what might be a genuine reason for someone to be upset. It’s just rude.

Have you tried gluten free, vegan, lactose free, acupuncture, reiki, crystals, healers etc 

Firstly I am not against holistic healing, I am all for it! but Endometriosis is just one of those conditions where the main treatment is surgery. Yes holistic treatments, eating well and looking after yourself will go someway to making yourself feel better but 99% of women are not going to have endometriosis implants heal up and go away by giving up gluten or having acupuncture. Again this one isn’t really offensive as such but if someone is in agony all of the time, maybe suffering with additional symptoms and tried multiple treatments already as well then this isn’t very helpful. For anyone without endometriosis it’s one of those conditions that when it’s bad it’s hard not to think about and saying to me that it could all be solved with giving up bread and pasta is not what I need.

I hope you enjoyed the above and I’m sure if there is any girls with endometriosis reading you have heard at least one of them. I am sure there are so many more so please share any you have heard in the comments.

Thanks for reading!

A x


2 thoughts on “What Not to Say – Endometriosis Edition

  1. Musings Of Meandering Spirits says:

    Thank you so much for this informative piece. I know little about endometriosis other than it is very painful. I could not help but think while reading this that your words apply to just about every chronic illness. I have had these same or similar comments about my illnesses and I have situations where I have felt invalidated and misunderstood. So, in writing this post you have not only done a service for those suffering from endometriosis, but also for those who suffer from any chronic illness. Thank you!

    Liked by 2 people

  2. Heather Tasker says:

    Endometriosis and interstitial cystitis cause pelvic pain at least 3/4 weeks of my cycle and I’ve wanted a second child for almost a decade. It’s a cruel disease and I *really* wish people would ask questions or do research before trying to “help”.

    Then again, cutting out grains and dairy have made a big difference in my hormones and health issues (though I’m back on the milk train), so I am sometimes one of those “have you tried Paleo?” sort of people. Sorry.


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