I am 1 in 10. It’s a statement you might have noticed recently but what does it mean? Well, it’s used by endometriosis sufferers during Endometriosis Awareness Month to promote how widespread this condition is. But there’s a lot of misunderstanding around the topic of endometriosis so today I want to share the 7 things everyone should know about endometriosis.
This content is intended to share my personal experience for entertainment purposes only. It does not constitute medical advice. I am not a healthcare professional nor do I claim to be. Therefore I accept no liability if you choose to take action based on information found here as this is done entirely at your own risk. Always consult your healthcare provider for medical advice.
1. It’s not just a women’s issue
Endometriosis is a chronic condition where cells similar to those lining the uterus grow outside of the womb. Because of this, it is often referred to as a women’s or reproductive issue. However, it can affect the whole body.
And while it is certainly more common in women where it’s estimated to affect 1 in 10, it can also affect men.
2. Health care providers don’t know enough about endometriosis
Even though it affects such a huge chunk of the world’s population, there’s still not enough awareness and there’s too much inaccurate information out there.
This gap in knowledge and research contributes greatly to the length of time taken for many of us to get diagnosed. It takes on average seven and a half years to be diagnosed with endometriosis here in the UK. And in the meantime, we are often misdiagnosed or not taken seriously.
To complicate things even more, endometriosis is highly individual in its symptoms, effects and severity. This makes it more difficult to diagnose based on symptoms alone. It is also the reason why endometriosis isn’t considered a disability in the UK, even though it can be difficult to do everyday tasks or continue working.
3. It’s not just bad period pain
The first physical symptom that will come to mind is period pain but please hear us when we say that endometriosis is not just a bad period. It’s so much more than that. Here are just a few of the physical symptoms that I deal with each and every month:
- Pelvic pain
- Lower back pain
- Bloating/endo belly
- Weight gain (double what I’d gained in pregnancy in half the time)
- Migraines with/without aura (sometimes 6 days a week)
- Mood swings
- Low mood
4. The pill won’t relieve all symptoms
The contraceptive pill is often the first “treatment” for endometriosis. I’ve been on the pill to relieve my symptoms now for almost two years and while yes, my cycle-related symptoms are managed better, they do still exist. Around ovulation, I still get the usual ovulation cramping and moodiness. And then when my period would be due, I still get intense cramping, mood swings and other PMS symptoms.
The pain is less intense and less frequent than without the pill but not gone entirely.
And that doesn’t even account for all the other endo related symptoms that cannot be treated with hormones.
5. There is NO cure for endometriosis
I can’t tell you how many times I’ve been given unsolicited advice that suggests X, Y or Z could cure me. There is no cure for endometriosis. There isn’t even a test to diagnose it that doesn’t involve being cut open.
So no your oils/diet/surgery won’t help me. Some patients do report easing of symptoms during/after pregnancy, after a laparoscopy or hysterectomy. However there are patients who report an increase in symptoms after these same events.
This is one of the reasons why I haven’t taken up the offer of a laparoscopy. My pain is managed efficiently enough that I don’t want to risk aggravating it by having surgery. (Especially since my symptoms presented a few months after my caesarean.)
6. It doesn’t just affect you physically
The impact endometriosis has had on other areas of my life has been potentially worse than the pain itself.
It hurts when you’re in immense pain and no-one believes you. Even though it’s the worst pain of your life, it’s written off as normal or psychological. To have all your tests come back normal while the life you knew disintegrates. Those were some of the lowest points of my life as I grieved for myself while waiting for some relief, for someone to understand the pain I was feeling and want to help me overcome it.
Equally, my anxiety is at an all time high. I’m constantly at battle with myself. Having to ask myself, do I have the energy to do this pretty standard task, is dehumanising. I’m still young and relatively healthy so why is it so difficult to do things like go for a long walk or do the washing up without being exhausted and in excruciating pain at the end? I get frustrated in that place between wanting to do something and knowing I physically can’t. So I either push myself and live to regret it or accept my limitations and have to miss out.
And then there’s the cognitive side of things. Not all endometriosis patients will experience brain fog but I know myself and many others do. It can hit and linger for days, affecting my ability to speak or write or concentrate. Maintaining conversation becomes impossible. Most of the time, I can look fully present and engaged and yet wind up having no recollection of what was said by either party. The more voices, the harder it becomes.
7. Endometriosis IS a disability
While endometriosis isn’t strictly considered a disability, it should be. For all the reasons I’ve already addressed.
As it stands, there’s no protection or support for people who suffer from endometriosis. This is a condition that affects women and men from adolescence, through school and work life, and into old age.
The stigma that it’s just a bad period doesn’t help matters at all. Leaving sufferers exposed to workplace bullying because their colleagues don’t understand the severity of the situation. Instead they’ll make comments about how they have periods too and still manage to attend work as usual.
And what about the people whose symptoms are so severe that they are unable to work? There’s no support for them at all. They’re left to find new and innovative ways to make money from the comfort of their own home.
The school age endo warriors who miss huge chunks of their education being in pain, misunderstood and generally dismissed by health care providers.
When I spoke to a friend about how I identified as disabled, even though many people would argue that I wasn’t, I said:
I can’t stand in my kitchen washing dishes for more than 5 minutes without being overcome by pain and fatigue. Some days I can’t even string a sentence together. Walking a mile and a half can have me howling in pain and bedridden for days. How is that, in any way, indicative of an able bodied person?
As you can see, endometriosis is so much more than just a bad period. It’s a life-changing condition that has the power to tip your world on its head and affects you in so many ways.
For more information and support, please check out the Endometriosis UK website.