What’s Wrong With You? Part One: Endometriosis

en·do·me·tri·o·sis

/endōˌmētrēˈōsəs/

Noun– a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain.

As concise and accurate as this definition is, for people unfamiliar with endo, this does nothing to help understand what endometriosis is, and what it does. In order to understand endo, you have to understand the layout of the uterus and surrounding tissue. So get ready for a crash course in the female reproductive organs that is probably more useful and informative than every health class taught in American public schools!

So, as you (hopefully) know, people with these reproductive organs (because some women don’t have these organs and some men do) go through a cycle that lasts about 28 days, before starting again. This cycle is the basis for pregnancy, and is split into four phases: menstrual phase, follicular phase, ovulation phase, and luteal phase. The menstrual phase is the one that most people are familiar with as it is the only one with outward signs, namely, blood and tissue shedding. The thickened lining of the uterus, called endometrium, is needed to support a fertilized egg for pregnancy. When your body realizes you are not pregnant, the endometrium is no longer needed and so it sheds itself and exits, stage right, through your vagina. Endometrium is mainly tissue, but during menstruation it is normal to shed a combination of blood, mucus, and tissue.

The follicular phase overlaps slightly with the menstrual phase as it begins on the first day of your period. The hypothalamus (the part of your brain that coordinates the autonomic nervous system, body temperature, thirst, and hunger) sends a signal to your pituitary gland (the stupid bugger responsible for puberty) to release follicle-stimulating-hormone. This hormone tells your ovaries to produce anywhere from 5-20 small sacs, follicles, each containing an immature egg. Typically, only the healthiest egg will mature, however this can differ between women and cycles, resulting in twins! (or any set of multiples, really, but I’m a bit biased towards twins.)

The maturing follicle tells your body to produce a metric butt ton of estrogen, causing the lining of your uterus, or the endometrium, to grow and thicken.

Ovulation is when the matured egg is released through the fallopian tube and waits, hoping to be fertilized. After about 24 hours, if the egg does not get what it wants, then it will die and dissolve, which is a mood.

Finally, the luteal phase raises your hormones to keep the endometrium ready for the fertilized egg. If you are not pregnant, your estrogen and progesterone levels decrease causing the menstrual phase, and thus the cycle of blood and babies continues.

Okay so now that we understand the cycle, let’s talk more about Endometriosis.

Remember the endometrium we talked about? The blood and tissue pillows for the tiny egg baby? Well that lovely stuff sometimes grows where it’s not supposed to, and no one knows why. There are theories of course: that it’s genetic, that it’s due to hormone abnormalities, it’s retrograde menstrual flow, etc. However, despite every male doctor I’ve ever seen ‘knowing exactly what’s wrong’ with me, the mystery surrounding endometriosis continues.

As you can see in this lovely diagram, the female reproductive organs are surrounded by parts of the digestive system. When the endometrium grows outside of the uterus, it can latch onto the ovaries, fallopian tubes, colon, bladder, and even grow as deep as attaching to the fascia in deep muscle tissue.

So, why is this a problem? First, this is tissue that should not be where it’s growing. The body is smart, and knows that it isn’t supposed to be there, so it does what it does best; it fights the invaders. Your body is constantly at war with itself. Then, during the luteal phase going into the menstrual phase of the cycle, hormones are going through your brain telling that endometrium to shed itself, so it does, but it has nowhere to go, so wherever that extra endometrium is hanging out there’s engorged tissue and extra blood on top of all the cells fighting each other.

But Alex, it’s just a bit of extra tissue! Why is this such an issue?

Unfortunately, women’s health issues have always been put on the back burner as far as the medical community is concerned. So the pain is often written off as PMS, or “women having a lower pain tolerance than men”, again something I have heard repeatedly from my doctors. Endometriosis is not visible via ultrasound as it just looks like tissue. The only way to see that it is endometrium is to actually open up the pelvic cavity and look inside. Yup. It’s only diagnosable through surgery.

The pain experienced every day, and then those special excruciating moments during menstruation, differ with each person. For me, the every day pain can be as mild as annoying cramps, (like a charlie-horse in my pelvis), to feeling like I’ve angered an ancient Samurai spirit who is stabbing me repeatedly while simultaneously squeezing my insides with a hand made entirely out of razor blades.

Treatment

Being a chronic illness, and one that has yet to be fully studied, endo has no cure. There are a few different treatment plans, but nothing long term. Even getting a hysterectomy, surgery to remove the uterus, does not make the endometriosis go away. Some people go into surgery to have some of the extra endometrium removed, but this comes with its own side effects. Like all surgery, it’s risky, and there’s no guarantee you can remove the endometrium. It’s like removing a sticker from paper. You can get rid of it, but it’s going to either leave something behind, or take something with it. And the endometrium usually grows back within a years time.

Endometriosis is a little known illness, yet it affects about 176 million people worldwide. While there is currently no cure, and very few effective treatment plans, I have hope that we will one day get to the bottom of this illness. Because this illness might be strong, but we are stronger.

en·do·me·tri·o·sis

/endōˌmētrēˈōsəs/

noun- a condition in which the patient, while suffering from chronic pain, fatigue, increased anxiety and depression, inflammation, and scaring, still manages to be a kick ass, totally awesome, Worry Warrior.