“Can endometriosis kill you?” is a question I see many ask. As an endo warrior, I can confidently say that the answer isn’t so simple, and here’s why…
If you would like to watch a video version of this video then you can right here, or just scroll through to read on:
Can Endometriosis Kill You?
Technically, no, endometriosis cannot kill you, but like I said – the answer isn’t so simple.
Endometriosis can cause complications which could be “fatal” – as explained by the Healthline:
“In rare cases, endometriosis can cause medical conditions that have the potential to become fatal if left untreated.”
This article on Healthline goes onto talk about how endometriosis can cause small bowel obstruction and ectopic pregnancies.
What we must also remember that endometriosis lesions can be found in the diaphragm region and in very rare cases the brain too.
Endometriosis lesions can grow their own on nerve supply as well:
Endometriotic lesions can also develop their own nerve supply, thereby creating a direct and two-way interaction between lesions.
— Endometriosis Cure (@Endometriosis11) April 3, 2020
It’s a multi-organ complex condition that targets at least 1 in 10 women and sadly (or shall I say pathetically) takes an average of seven years to diagnose.
Now I won’t dive further into explaining the medical side and statistics of it all – I want to talk about the lack of empathy when a doctor says – “at least it won’t kill you” or “it’s not fatal”, or to put it more politely, “endometriosis is not a life threatening disease”.
I have never understood why quality of life is never taken into consideration.
Shall I feel grateful that I will experience pain, roll around in bed, scream and cry for most of the month and then be thankful that I didn’t die from it?! At the same time making sure it’s tough to earn a living let alone think about socialising.
I think what we fail to recognise is the fact that endometriosis can cause suicidal tendencies.
In 2019, a survey revealed that:
“About half of women with endometriosis reported that the condition led to suicidal thoughts”
Referring to endometriosis patients who did commit suicide, an endometriosis activist, Jaimee Rae McCormack said…
“Some of them have gone due to taking their own lives because they just couldn’t cope anymore and didn’t have the right support,” McCormack told the BBC. “It’s really heart-breaking.”
If we look at chronic conditions as a whole, a study done by the University of Waterloo says:
“Young people between the ages of 15 and 30 living with a chronic illness are three times more likely to attempt suicide than their healthy peers,”
Now imagine a girl getting her periods at age 12, she is in pain for the average of seven years before she is taken seriously or even diagnosed – what will her state of mind be?
It’s currently quite a trend to speak about mental health – but we forget what we do to those with chronic conditions by being dismissive or by not creating conducive environments for them to lead normal or at least semi-normal lives, let alone flourish.
Let’s quickly look at the definition…
What is ‘Quality of Life’?
In general, we can say our quality of life is defined by our:
- quality of health – mental and physical
- quality of education
- quality of food
- quality of employment
- quality of relationships
- quality of wealth
- quality of leisure time
Let’s look at this list again – and imagine poor health and then trying to excel at school, a job, in relationships.
Leisure time and hobbies don’t even factor in.
So now, I wish to ask, for chronic illness patients…
Why don’t we ever talk of living life or the quality of life?
What I’m about to say is purely based on my personal experience and what I’ve learnt from it.
The first point of contact for most patients is their family, then their doctor.
Many endometriosis patients get a lot of support from their family, but it’s the doctors that lead the way in terms of treatment and explaining the do’s and don’ts of any condition.
It’s the doctor that should tell you what physical activity is needed, what food to eat, what signs to watch out for – the expected and the rarer signs of endometriosis – this goes for any chronic condition.
It is also the doctor’s responsibility to guide the patient mentally through this because endometriosis is a hormone driven condition – it may mean taking medicines that have hormones in them, which can drastically alter a person’s mood and send them through a wave of depression.
But you’ll find that the majority of doctors (speaking from my experience and of others who have interacted with endo doctors) will not tell you about mental, emotional and physical side-effects of endometriosis and the medicines given for it.
Relevant Reading:
What doctors fail to recognise time and time again is that the person’s everyday needs to be improved.
If patients are made aware of how they could feel then this information can be explained and shared to those close to the patient like immediate family, friends, school teachers, close co-workers, their boss – they become an essential to help form a strong and understanding support system.
It also gives space for an endo warrior to get counselling and be taken through better coping mechanisms.
So, again, why don’t we talk about living life?
We don’t because living life isn’t seen as a priority, especially if you don’t have the best health. You’re supposed to remain satisfied knowing that your endometriosis isn’t a life threatening disease, yet, it destroys the very basis of what we define life to be – it destroys the concept of living life.
I may sound like I am repeating myself, but that’s also what a chronic illness patient goes through – they’re told this so often that psychologically their understanding of living life diminishes.
Let’s make an attempt to change that – let’s take it upon ourselves to help not just ourselves (but begin with yourself) but also motivate others by sharing what I’m about to…
How do we improve our quality of life?
The most important thing for any chronic illness warrior and more specifically, an endometriosis warrior is to first incorporate certain essentials in their life.
I’m going to list these and I’d request you to please add more based on what you need – so best to use this as a guide, something that starts you off.
Or you might be reading this for a loved one, then you can use this as a guide too! 🙂
Here goes…
1. Diet
– What you eat matters – it’s what helps you fight and gain strength. A diet tailored to your condition has to be adopted, you really can’t get out of it if you wish to contribute in improving your quality of life and giving your body a better chance in fighting this.
I adopted six diet changes to help my endometriosis and Ehlers-Danlos syndrome.
Pls note: these changes in diet were in consultation with a dietician who understood all my medical conditions.
You can find its details right here:
2. Exercise
– Every condition, whether you have arthritis or endometriosis requires exercise.
Endometriosis is connected with multiple other medical conditions so you will need to work with a physiotherapist to understand which forms of exercise work best for you.
Is it yoga, walking, stretching, going for a run, pilates, weight training, resistance training, tai-chi, playing a sport or even a combination of a few of these that’ll help you strengthen your abdomen muscles, improve your hormone levels and increase your focus?
That is something you will need to figure out.
As for me, I do a mix of yoga, stretching, walking, resistance training with bands and aqua therapy (on some rare occasions).
3. Work
– Many women with endometriosis do have to step out for work and although this can be very challenging especially if all you wish to do is curl up with a hot water bag, I would still say work is essential in keeping the mind active and productive.
For really bad days it’s important your HR, colleagues and your boss know what endometriosis is and how it affects you.
I’d also suggest, keeping your prescribed pain killer, vitamins and menstrual heat patches for bad pain days handy at work (please consult with your doctor before you use a heat patch).
You could be working from home which could mean that you can try and set your own productive schedule to guide you, to help you maintain a routine that makes you happy.
I wrote about how I work from home – I’ve shared all my tips here:
4. Hobby
– Keeping the mind engaged in activities you enjoy is always a plus.
You could enjoy playing an instrument, singing, reading, writing, painting, cooking, crafts, stitching, playing darts, gardening, knitting – so do it.
The point is to connect with yourself through this process – or even get lost and go into this zone of relaxation and just drift away into your own world.
5. Talking
– I believe being communicative with those closest to you can be so beneficial. These are people who care, look to understand and support you.
I do understand that there are some of us out there who have no support and this is where meeting like minded people on social media, others who have similar issues to you can be very helpful.
We can all support one another too.
Another option is support groups for your particular medical condition in your country – some are even city based.
The point is to reach out and stay connected so that you don’t feel like you’re all alone in this.
Read Here For:
6. Self-care
– It’s the little things we do to take care of our body that goes a long way in helping us feel physically and mentally much better.
Let’s look at how to take care of both these aspects.
Physical Self-Care:
– When dealing with varying hormones and various medications, our hair and skin goes through a lot of adjustments and turmoil.
We mustn’t forget to take care of ourselves.
When I was a teenager and adjusting hormone medications, I went through horrible acne. I experimented with natural products to help myself and 20 years on, they still help to maintain my skin.
My acne story:
- My Battle with Endometriosis and Acne
- My Acne Skincare Remedies – Endometriosis & Ehlers-Danlos Syndrome
So I would strongly recommend home-made face packs, scrubs, and oil concoctions to give yourself a massage.
For example, I have arthritis in my left wrist which gets aggravated on days I type a lot so I’ve made it a point now to massage my fingers, palm, wrists, forearm and elbows with almond oil that has a few drops of lavender essential oil in it – it helps to get the circulation going and the lavender relaxes the muscles too.
Speaking of massages, I give myself a scalp massage with coconut oil (btw – coconut oil is great for removing makeup too!).
Again a scalp massage helps to improve blood circulation and most importantly, just like when we apply face masks or use a scrub, during a massage we are actively taking time out to take care of our body – giving it love and attention which is most important for our overall well being.
View this post on Instagram
Mental Self-Care:
– Taking time to close my eyes, breathe and meditate helps to slow my racing mind. It reduces the stresses of being in constant pain, which can so easily spiral towards thoughts which aren’t so healthy.
If you don’t feel inclined to meditate, I would highly recommend you to begin with just breathing.
Sit in a comfortable position, close your eyes and focus on your breathing. Do this at least five minutes a day. It’s a great way to calm yourself and giving you clarity of thought.
Relevant reading:
7. Meeting friends
– Most of the time, I would rather be at home, rest and even just stay snuggled in with my hot water bag.
Pain can make it really tough to socialise but on days when I do have reduced pain, I make an effort to step out and meet friends.
A change of scene, fun conversations and good food can make such a difference.
This personal interaction with people who care and understand can be so refreshing.
I do understand that many times we go through longer phases where we can’t do anything more than the basics – and that’s okay, we have to do what’s necessary for us in that given time.
Also, never feel hesitant to re-schedule plans if you’re not feeling upto it.
Here’s a guide on:
- My Thoughts & Tips: Chronic Illness and Relationships
- Tips: Dating Someone with a Chronic Illness (like Endometriosis)
Again, I ask… can endometriosis kill you?
Yes it can. The difference is in what we define life to be.
Work out what life means to you and understand how you can improve your quality of life – hopefully the essential steps above will help you.
That’s it for today.
Let me know what you think by sharing in the comments section below and maybe even share how you’ve adapted with your chronic illness and have been trying to live your life.
O’ I’m also active on Instagram, Twitter, Facebook and my Pinterest – in case you wish to follow 🙂
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.