As some of you may have figured out, I have endometriosis. A chronic illness which has been widely disregarded, misunderstood, and underrepresented.
One of the biggest “lies” that circulates about endometriosis is that it causes bad cramps. I say “lies” with the quotation marks because technically, it’s true that endometriosis causes bad cramping. However, that is not where the symptoms stop.
The general consensus among most of the people i’ve spoken to about endometriosis, even if they’ve heard the term before, is this: “that causes really bad cramps right?!” and/or “so you have really heavy periods?” and thats about all they know and/or have heard about its symptoms. While those may be common symptoms, I loathe that they are the only ones people seem to know about. People attribute bleeding and cramping to a woman’s menstrual cycle and therefore don’t see these symptoms as “that bad”, which is part of the problem.
Firstly, yes we bleed and have cramping as a natural and normal part of our reproductive cycle. However, full on and bad pain, and very heavy or very light bleeding is not normal. The normalization of pain in association with the female reproductive system is one major reason why endometriosis has been vastly under-appreciated for the hell that it is.
Doctors have told patients, and teachers have taught, that its OK and normal to feel a lot of pain with your period, saying its “just cramps” and writing it off as normal. In my (and many others) experience, the first line of defence for young people who complain of bad cramps to a doctor is for them to disregard it until said person is a teenager; “take Tylenol/Advil” they said. Once a teenager, the prescription becomes recommending larger doses of Tylenol, etc., and then prescribing birth control. And thats about it unless you really ride their ass about it. Then, if you’re “lucky”, you will get prescribed narcotics for pain management while simultaneously being misdiagnosed a bunch of times. AND, quite possibly, put on medication(s) you don’t need (causing lots of other problems) due to that misdiagnosis.
Secondly, symptoms go far, FAR beyond “bad cramps” and “heavy bleeding”, and can be different for everyone. Like most things, one size does not fit all and therefore a generalization of symptoms used on everyone, and distributed as fact to the general public, is unacceptable.
No person with endometriosis that i’ve talked to has had the same symptoms, a lovely feature of the disease which is partially responsible for the lengthy diagnostic process.
SO, I must ask, if people don’t widely manifest the same symptoms, why does it seem like people only know about the same two symptoms? Ie. cramps and bleeding.
For my own symptoms (sorry it took so long to get to this bit), the heavy bleeding hasn’t been a factor in years. When I was a young warthog, I did get fairly heavy periods, and yes they were accompanied by bad cramping. But there was also extreme nausea, incredibly weird contractions, migraines up the wazoo, pain that shoots down my legs, unbelievable fatigue, a lower-belly-uterus-area bloat that makes me look like i’m with-child, and an inability to eat… anything, 50% of the time.
As i’ve grown up, the main symptoms that’ve changed are that my periods are no longer heavy as hell and I don’t get frequent migraines anymore, but that’s about it. The pain has increased, the contraction severity has increased, the nausea has increased, the fatigue can be overwhelming, the bloat (endo belly) is just as annoying as ever. Fun new additions have included increased anxiety about certain things, and bouts of depression – which tends to happen when you’ve been in pain most of the days of your life, with zero (or shit) solutions.
I think a lot of people look at these symptoms and say “thats not that bad”, and maybe you’d be right if it was a one-off or occasional thing. But chronic means ongoing, as in: [possibly] NEVER FUCKING ENDING. I personally experience one or more of the aforementioned symptoms daily, all day. And i’ve been experiencing them for about 18 years total, 10-14 of which I had no proper clue what in hell was going on with my body.
I really don’t like the general disregard for my pain by other people. I know that it’s difficult to understand something when you aren’t experiencing it yourself, but still. When I say to people that I get painful contractions, I mean painful as in I have to attempt to sit down, or else grab onto the nearest standing object [if possible] because I physically cannot stand up straight when this pain hits. If there’s nothing/no one within a grab-able or sit-able distance, I’ve been known to just double/fall over. Sometimes I cry.
Is that the kind of pain that is not a big deal? Is it just bad cramps? How often do your cramps reach from your lower-belly-area, deep down into your body and grab your colon?
Sometimes I get morning sickness and have to lay in my bed for an hour or so until it passes. Sometimes It doesn’t pass. I get so nauseous that I can’t take a shower because the steam makes me dizzy, or I have to eat only soup (or nothing) the entire day because the smell of anything else makes me want to vomit. Sometimes I do vomit. And oftentimes the nausea is caused by pain, if it doesn’t just show up of its own accord. The colon-grabbing contractions also can cause quite a bit of nausea when they strike. I’ve slept on the bathroom floor more times than I can count. I’ve been in a sobbing heap on the floor of a hospital waiting room at least twelve times in the last four years. That might not seem like a lot of times for four years, but i’m of the opinion that no one should be in a sobbing heap on a hospital floor – ever.
My endo belly is an interesting phenomenon. Sometimes I can feel it coming, and it’s accompanied by a lot of pain and pressure. Other times I feel nothing particularly terrible but still resemble an expectant mother. It also varies in size, and I never know how big or small it will be.
I’m very lucky, I don’t often look six months pregnant (or more), usually it caps at about three months. Either way, stretchy, or no pants are involved. Because I live in Canada and we experience more colder months than warm ones, dresses are a sometimes option. When I can wear a dress, it’s freakin great.
The fatigue is actually my least favourite part, even over the pain and the belly. I LOATHE feeling a tiredness that you can’t shake. I can’t tolerate a lot of caffeine, so coffee isn’t even a real option for me (apparently common among endo sufferers). But when I do have some kind of caffeine, it barely helps a bloody thing.
There are some days where, even if i’ve gotten a full eight hours of sleep, I feel so fatigued that it seems like i’m walking through a drug-induced haze – even if I haven’t taken a thing. It’s like being drunk on air from the moment you wake up, which i’m not entirely sure I have done on those days.
My own symptoms have been a daily part of my life for years and years, regardless of if you can tell or not. I’ve ditched friends, hobbies, and events because of my symptoms and their effects on me. It’s really, really hard to do “regular” things when opening your eyes in the morning makes you tired, you look pregnant, and it feels like theres a gremlin gnawing its way through your midsection. And that has more or less been my daily life for years on end, give or take a faux-baby-belly.
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