My take on the myths that surround endometriosis

It's true!  One in ten women struggle with this condition.  

Yet with so little still known about the disease, it’s so easy to get confused by different claims and myths around it.  Here’s my take on the main nuggets of (mis)“information” that you may hear when you’re on your endo journey.

It’s just bad period pain.

Probably one of the first myths you’ll hear, and sadly not just from friends and family but this is also something I’ve known to come from the mouths of some in the medical profession.  Which beggars believe in this day and age;  when the very people you turn to, probably after years of symptoms, gaslight you and your symptoms.   Endometriosis is not “just a bad period”.  I mean yes, it’s a bad, bad period but it is so much more than that.   Did you know that period aren’t meant to be painful?   A small amount of cramping for one or two days, maybe, but anything over and above that isn’t right.   It doesn’t mean you’ve got endometriosis but it does mean that you may need to do a bit of investigation as to why you’re experiencing this pain.   

I know the pain I’ve experienced from my endo is almost indescribable.  (Apologies if you’re eating…)  I always describe the pain as if someone has a coat hanger wrapped around my uterus and is simultaneously twisting it and pulling it down.  And that isn’t just pain in my abdomen; there’s also pain right down my right leg and into my lower back.    And that’s just the pain at menstruation – there’s also a lesser pain mid-cycle, too. 

And that’s just the pain – there’s also the bleeding.  (Again, apologies if you’re eating)  Did you know that ‘healthy’ menstruation is bring red blood, without any clots? Not too heavy?  Maybe lasting a few days?   Well with endometriosis, not only is the blood dark and full of clots but it can go on for days. 

So yes, it’s kind of a really, really, REALLY bad period.  But calling it such diminishes the symptoms of endo beyond recognition – inferring that it’s something that will pass, something that other women wouldn’t worry about or something that is fundamentally normal (and beautiful).  It is none of these.   That’s like saying that a brain tumour is just a bad headache.   

There’s no cause.  Everything has a cause.  It’s just that Western medicine can’t pinpoint an exact cause just yet.  The trouble with this myth is that is adds a sense of hopelessness to the list of crappy mindset stuff you’re already feeling.   It DOES have a cause – there is a reason you’ve got endometriosis.  Eastern medicine may explain it (I totally believe it does).  Even if you don’t know or believe what your cause is, there is a cause and you can get to the bottom of it.

If you have minimal disease, you’ll only have minimal symptoms.  I have never really been able to figure out why endometrioses has been classified like it has.  Its classifications suggest a progressive illness, or at the very least an illness that gets more severe in different classifications.  But it really isn’t.  

I was diagnosed with stage 2 endo in my mid-20s.  There are four stages, with stage 1 being classed as the most ‘minimal’ endo and stage 4 the most ‘impactful’.   I couldn’t fathom how I could be experiencing the levels of pain and fatigue I was experiencing (amongst other stuff) when I “only” had stage 2.  I was almost embarrassed to admit it was stage 2 because, to my layperson’s mind, it sounded to me like it wasn’t much at all.  It was almost like it was adding fuel to the “just a bad period” fire.  

Endo doesn’t work like that, though.  Stage 1 is almost a different illness to stage 4; it simply denotes the amount of endo and the existence of other issues like cysts and adhesions.   But stage 1 endo can be more painful than stage 4 endo.  Fertility tends to be more impacted by stages 3 and 4, yet my laparoscopy showed endo on my ovary and I was told that this did impact on my fertility.  So no, the ‘stage’ of your endo has NO link at all to the symptoms you experience.  

Pregnancy is a cure for endo.  

There is kind of a shred of truth to this in that, for some women, pregnancy can see the end of their endo;  sometimes it never returns sometimes it does.  But let’s be clear – it isn’t a cure and it should not be seen as a cure if for no other reason that the issue of pregnancy in itself can be a huge trigger for women with endo.  One of the first things we worry about when we get the diagnosis is the impact on our ability to conceive and to pile even more pressure on an event that is so impacted by stress and anxiety (and endo) anyway is not helpful.

In fact, the ability of women with endo to get pregnant is another myth; all too often we’re told that we can’t get pregnant with endometriosis, or that it will be really difficult.  But that isn’t necessarily true – it all depends on a range of factors:  such as what stage of endometriosis you’re diagnosed with, your age, you other symptoms and your general health.  Also, just because you’re diagnosed with a certain stage in certain places, that doesn’t mean that you can’t do something about it.   Many women have successfully reduced their “fertility-limiting” endo and gone on to have children.   Everyone is different and if you’d like to explore this avenue then it is better doing so sooner rather than later, as it can take time.  

Just because you’ve got endometriosis does not necessarily mean that you can’t have children.    And just because you may get pregnant with endometriosis does not mean that your endo will disappear. 

You can’t have endo if you’ve had a hysterectomy   

This is the myth that breaks my heart the most, because this is the myth that can potentially cause the most damage.  Let’s be VERY clear about this…  you don’t need to have a uterus to have endometriosis, so the removal of the uterus is not a cure for endometriosis.  For some women it can ease the symptoms but in most cases, they come back and sometimes pretty quickly.  

You can also have your ovaries removed as part of your hysterectomy, which technically lessens the risk of the endo symptoms returning HOWEVER, this puts the body into an early (and forced) menopause.  This obviously impacts on your hormone levels (that’s the point), but the knock-on impact of this is an increased risk of osteoarthritis and brittle bones, hair loss etc etc.   So most doctors will recommend a course of HRT to counteract these symptoms but guess what… that will then pump your body full of oestrogen, which will then encourage the return of the endo.  

So many women report feeling as though this is their last resort, or only option purely because their doctors simply don’t know what else to do.   This is one of the biggest travesties about our illness. 

Myth-busting the myth-busting

All that said, there are a couple of common “myth-busts” that I disagree with.   This is my current favourite;

You don’t need to get a diagnosis to get treatment.   

So one myth-busting website I saw (and no disrespect, because I actually really like this site), used the analogy of a car;  if you were driving down the road and your car lost power, you wouldn’t accept the mechanic just poking around trying random things without knowing what was wrong (sic) so why would you do that with your body.   Agreed in so far as Western medicine goes HOWEVER, with “massively improved” waiting times for endo diagnosis still averaging over 7 years, why on Earth wouldn’t you try to get better during this time?  

I realise it’s easy for me to say this because I got diagnosed 20 years ago.  I had no first-hand experience of alternative or Eastern medicine at this point and all of my skills and knowledge has been gathered since my diagnosis.  I can’t say how I would have felt at the time if someone would have said I could get rid of all the pain, the bloating, the bleeding and everything else before I got the diagnosis.  Now?  Well, I wouldn’t hesitate but I’ve had 20 years of successes, learning, appreciation and witnessing the impact Eastern medicine can have.

So in regard to this myth – it’s TRUE you do not have to wait for your diagnosis to seek help.  It’s not the same as a car because Eastern medicine doesn’t need work on a diagnosis basis – it uses your symptoms (ALL of them) to identify the root causes itself.  As a Therapist, I would follow exactly the same processes and protocols whether you had your diagnosis or not.  So it makes little difference to me if you’ve been diagnosed with endometriosis. 

The risk is that your symptoms clear before you get your diagnosis, so you may never formally have had endomitosis.  Are you happy with that?  That has to be your own, personal choice.  But at least you know you have a choice…