It’s rare that I will come across someone that knows what endometriosis is. Which is pretty shocking considering it effects an estimated 1.5 million women in the UK alone.
Others tend to hear about it because they know someone else that has the disease, and therefore I see it most commonly explained back to me as just “bad period pain”.
This marginalisation of endometriosis as ongoing (and linking it to what is implied to be unreasonable) bleating about menstrual pain, does me and other sufferers of this serious chronic pain a great disservice. To be quite honest this over-simplification of what endometriosis is has to stop.
The problems with comparing our main symptom to period pain
I try not to be short with people when it comes to comparing the profound and extremely varied pain that endometriosis causes with that of heavy or painful period pain. Mainly because I’ve experienced both separately (and at the same time) and I can clearly distinguish the two types of pain.
Those of us who later went on to be diagnosed with endometriosis often experienced extremely painful periods for years, maybe even decades before endometriosis was pointed out as a root cause. In fact I started on the path of what was to become my endometriosis diagnosis after about a decade of extremely uncomfortable period pain, which I believed I was stuck with. It wasn’t until my endometriosis pain started in on top of that pain that I insisted something was done to find out what was wrong with me.
So I can say with some authority (given the extremely uncomfortable pain that endometriosis causes) that even the very worst throws of my period pain didn’t come anywhere close to that pain. Importantly the medical world agrees, with endometriosis frequently appearing in lists of the top most painful health conditions.
So there is a real problem with comparing what it quite often the first sign that someone has endometriosis, against what the pain ramps up to when endometriosis is confirmed to be present.
Not to mention the fact that the two types of pain are almost completely different. Menstrual pain for me, was a dull, but persistent ache that rolled through my pelvis in waves. Endometriosis pain is sharp, stabbing and twingy, akin to fresh tooth pain (only within your pelvic area) it makes your skin crawl with discomfort the first few times you feel it.
This point is important, because some period pain is normal. Endometriosis pain is not. Endometriosis pain is terrifying when you first experience it. The pain is so unbearable at any time, but even more so when it’s new. You think something is seriously wrong with your body, and with the way it hurts, you worry that it’s caused something that will cause you to die.
The other main problem: length of pain
Period pain tends to only last for a few days, perhaps a few days a month according to the menstrual cycle. So by it’s definition it’s on a set schedule.
Many of us with endometriosis are blighted by pain every single day, there is no routine or pattern to the pain. It’s always there.
The intermittency of the pain, the way it comes and goes as it wants to remains one of the most frustrating aspects of living with this disease. Whereas period pain can be planned for, scheduled around, maybe even managed by date, endometriosis is long term and infinitely far-reaching in its ability to disable or prevent us from leading normal lives.
I don’t have periods anymore
One of the recommended treatments for endometriosis (which for me dulls the pain, but doesn’t completely remove it) is for my body to be tricked into thinking I am pregnant – indefinitely. I have an hormonal implant, and take a combined pill back-to-back, and the combination of these two things have stopped my periods entirely.
Which begs the question:
If my endometriosis pain is just bad period pain, how am I still in pain when I haven’t had a period in over three years?
I have genuine fun with that question, because it absolutely baffles people. Because here’s the thing. I know more about endometriosis than the average person, so I won’t be be belittled by someone else’s perception of what the disease does to me or to others. Most people’s attempts to understand won’t even come close to the reality.
I guess I have a dark sense of humour, but I love tripping people up with this simple quandary, because anyone that knows the answer to it has some genuine experience of the disease through either experiencing it themselves, being close to someone else with it, or having wider experience of chronic illness.
The answer to my question? Endometriosis, like all chronic pain isn’t that simple.