Today I want to talk about my endometriosis.  As usual for me, I don’t know anybody who has experienced the endo the way I have, if there were anyone out there who can say “me, too!” I would love it.

I am often angry / annoyed about endometriosis.  First of all, it is so dramatically under-researched, it’s practically Victorian the way doctors shrug it off.  Nobody knows what causes it, they say; and when doctors say that I can hear them thinking “and we don’t care much, either.”  If it happened to men, they’d sure have looked at it a little bit harder by now. 

Okay.  (breeeeathe).  I can’t start ranting yet.  As you know, endometriosis happens when uterine lining tissue exits the uterus and gets stuck all over everything else in the pelvic region (or beyond, if your endo is ambitious and has lots of time to go wandering).  I like to think of it as my uterus throwing up, and endometrial cells coming out and making a big mess.  I’m gross like that.  So this misplaced endometrial tissue is sticky and grows and makes scar tissue.  I have seen pictures and it looks like Spanish moss.  Ewww.  This tissue seems to be responsive to hormone changes, and at certain times it might grow, shrink, or wrap itself around things like your fallopian tubes, bladder, colon, and ovaries. 

I have endometriomas, cysts on my ovaries; I’ve had ’em since I started TTC and I am told they are so grown into the ovaries, that taking them out means there wouldn’t be much ovary left.  This is one reason why I have not had laparoscopic surgery or anything else.  Sad as they are, I still need my ovaries.  I don’t need their eggs, but they are still putting out appropriate hormone levels at the appropriate times, so I’m inclined to keep them.

For me the endo is two things.  It has probably affected my ability to conceive since before the beginning.  Meaning that I have never had a spontaneous pregnancy that I know of in my entire life, so I wonder. 

The second thing about the endo is the pain.  I’m sure my endo is interfering with my digestion, possibly my colon somehow.  My endo showed up about five years ago as stomach pain.  I wasn’t married, wasn’t TTC, but started having stomachaches that were extraordinary.  I’ve never been a stomachache person so I hadn’t experienced that before.  They were always weird – they felt stomach-ish, sometimes accompanied by nausea but no vomiting – and the pain was always low, pelvic.  I could lose a whole day or two to agonizing pain, and then it would just end.

What I know now is that these stomachaches were gas.  Not amusing, I-just-farted gas, but crippling painful gas that doesn’t come out for days.  Weeks.  I ended up at the stomach doctor, had a colonoscopy at age 40, had CAT scan (probably fried the last eggs I did have), and other diagnostic tests.  Of course I was counseled several times to “reduce my stress,” – just relax, it fixes everything!  The only thing they found was that my ovaries were “huge and polycystic.” 

No doctor looked me in the eye and said “Your stomachaches are caused by endometriosis.”  I figured it out myself, told the REs what I thought and they said, oh, yes, it’s gotta be the endo. 

The thing about it all that frustrates me is that there is some pattern to endo, but not much.  In addition to the ovarian cysts, I have a fibroid tumor that has been ultrasounded, mapped, and duly noted.  I’m either going to have it painted or give it a name soon; we know all about this thing.  But none of my endo and fibroids do what the doctors expect them to do. 

My endo is supposed to give me life-ending cramps.  It doesn’t.  My cramps are 2-Aleve bad, very occasionally 3-Aleve bad, and while that’s bad, it’s been that way since I was eleven years old.  Anybody else have a shout-out for outrageous menstrual cramps in the fifth grade, in the seventies?  Holy crap, how much did THAT suck.

Of course Aleve didn’t show up until the eighties, and before that, well, we just ate Advil like candy and suffered, didn’t we?  And before that there was only aspirin.  Chilling thought.  I learned to breathe through pain in those days and it’s a good skill to have.  Anyway, that level of cramp pain doesn’t match what I have heard from other women who have to take to their beds, throw up, and seem to have horrendous endo-related periods.

My fibroid is supposed to hurt when I go to the bathroom, and during my period.  It doesn’t.  The rest of my endo is supposed to act up during my period, and it doesn’t.  It all acts up in the middle of my cycle; that’s when the stomachaches come, the frequent urination, the gas pain.  Sometimes there is no pain, just a consistent nausea and fatigue – a nice facsimile of what being pregnant might feel like.  But, no.

The doctors love to say that millions of women have endometriosis and have no symptoms.  But I wish they would get better data on endo like mine.  I DID have symptoms, for several years, that nobody could figure out.  The doctors also can’t agree on whether endo interferes with conception and pregnancy beyond the mechanical.  Some docs think that endo is just physically in the way, but others think that the presence of endo causes some chemical imbalance In There that interferes, and those are the docs that want to put someone like me on Lupron for 3 – 6 months.  I’m inclined to not agree, but if I get more negatives and miscarriages I might go for that, and some leeches for good measure.

As I expected, my endo is kicking up already in this cycle.  I’m always glad to climb out of the very low estrogen levels when I start the patches; I feel more like a woman and less like a zombie.  But then I start getting the stomachaches and the party is over. 

I have developed ways to manage the pain.  I take two Aleve early in the day, to cover my workouts (which make the pain worse) and I am aggressive with all gas remedies.  Particularly ginger; chopped ginger, ginger tea, ginger pills.  I am also learning to expect less from myself.   I suck at lying down for four hours because I feel so crappy, but I have to do it.  Otherwise I’m walking the aisles at the grocery store with my face scrunched into a fist of pain, waiting until I get into the car to let myself cry.  I am not a heart surgeon.  Nobody will die if I take an afternoon off.  I have to remember that. 

Sigh.  Why am I telling you this?  I’m whining I suppose.  I would love it if someone else’s mysterious stomachaches could get diagnosed sooner than mine did.  I also hope that I have a daughter or two who won’t inherit my endo.  I’d love it if she someday asks me “Mom, what do cramps feel like?”  and I, my hysterectomy (and while-we’re-at-it tummy tuck) decades in the past, will pat her young smooth hand with my wizened old one, and laugh, and say “They really sucked.”