Invisible Illnesses: Fibroids and Endometriosis

I mentioned in my last post that I wanted to do a few profiles of the invisible illnesses I wished I saw represented more in the world. This week, I’m tackling one two that are very near and not-so-dear to my uterus. (I would just do one or the other, but since I have both — and since 90% of the symptoms are nearly identical — there’s no way for me to sort out which is which. Package deal!)

Fibroids and Endometriosis

Note: This is NOT a diagnosis guide. This is NOT being written from a medical perspective — I have a degree in Public Health with an emphasis in women’s health and chronic disease, but I am NOT a doctor. I’ve provided the links above to explain these diseases, but please DO go see your gynecologist if you think something like this may be wrong with you. Lastly, this is not a symptom list, nor is it exhaustive, okeyday? Bien.

In middle school, if you’d started your period, you were basically a woman already — more mature and lucky as heck. Well, “lucky” for me, when was 12 years and 5 months old exactly, thank you very much, I started my first period in gym class. (Insert every stereotypical awful middle school experience here.)

My mom was over 2000 miles away. I was the oldest child (not to mention the oldest girl). My dad wasn’t too keen on discussing the whole affair.

Little did I know, that would set the stage for the next 10 years of my life.

My first period lasted 31 days. I wasn’t too happy about that, as one can imagine, and the whole thing hurt like bloody hell — pun intended. My mom took me to her OB/GYN, but they told us everything was fine. First periods CAN last a long time, after all.

The cramps were terrible, but sometime around the middle of my 14th year, all hell broke loose. For starters, I’d bleed so much that I’d have to change my super-plus tampons multiple times an hour. That meant getting up and leaving class multiple times — something my teachers were not fond of.

And then there were the cramps.

When I say “cramps”, usually people nod sympathetically and tell me how sucky it is to have this little pain annoy them for a day or two. That is NOT what I mean when I say “cramp”. My cramps felt more like someone sticking a red hot wire umbrella inside of me, opening it up, and dragging it back out. (One of my characters described it as having her uterus wrapped in red-hot barbed wire and then having it dropped into a volcano, if you like that image better.)

I would down 4-6 Motrin when I woke up just to take the edge off. It would only work for 2 hours at most. One time, I asked to my frosh English teacher to be excused during my final exam. The school counselor (who was dating said English teacher at the time) found me curled up on the bathroom floor, sobbing, nearly 2 hours later. Needless to say, she sent me home.

I wasn’t always so lucky. Sometimes I’d nearly pass out from the pain and be on the verge of vomiting, and I’d call my parents and beg them to pick me up. The usual line was “Get over it — it’s just your period.” So I’d hide out in the nearest bathroom and cry until someone either dragged me back to class or sent me home.

I never slept while I was on my period. I’d stay in the shower (I didn’t have a bathtub) until all of the hot water in the house was gone. Sometimes I lay on the floor screaming for hours, curling up on the rug and begging God to just kill me because it had to hurt less than the pain did.

As I got older, everything got worse. My periods were nonstop — I never stopped bleeding. (Imagine a period that lasts an entire YEAR. That was my life.) The cramps ranged from a dull ache to a pain that would be considered torture under the Geneva Conventions.

When I was 18, I stayed in bed for 3 months rather than face the pain. By the time I was 22 and married, I was skipping weeks of class and work at a time because I couldn’t wear clothes — even loose ones — long enough to go anywhere without the pain overwhelming me. Still, the doctors told me it was all in my head.

Finally, after watching me live with this for months, my husband insisted I go to a specialist. In October 2012 — exactly 10 years after I first started my period — I got an ultrasound which picked up some fibroids. I was scheduled for surgery for Thanksgiving week. When I woke up from surgery, they told me they’d discovered widespread endometriosis patches all over my torso — about 13 or 14 of them. The surgeon got rid of the ones he could find, but warned me the patches would probably grow back — and that he definitely didn’t get all of them. A few months after my surgery, I had a Mirena IUD inserted to try and keep the patches away for as long as possible.

So fast-forward to today. Next week marks the 3 year anniversary of my surgery — and the patches are definitely back. Here’s a status report on my general “day-in-the-life”:

My pain is better than before — thanks to the IUD and some diet changes (wheat sets off endo pain like nobody’s business for me). I only get super painful days 3-7 times a month instead of 10-20 times a month. This lets me hold down 2 part-time jobs; I still can’t work full-time hours for more than a month or two. And, honestly, that’s considered relatively mild amongst girls with endo. Several of the girls in my support group have to be oxy or some other super strong painkiller 24/7 just to function.

(Quick note: One thing a lot of people don’t realize about endo girls is that we base our wardrobe choices entirely on what hurts the least that day. I wear jeans or other “nice pants” once or twice a month. The rest of the time, it’s yoga pants and sweats — if I put on any clothes at all that day. Whatever puts the least pressure on the abdomen = best.)

The pain from endo/fibroids also means I spend an inordinate amount of time in the shower/bath. If the pain is bad, I can take up to 10 baths a day! (No, I don’t have a cleanliness thing 😛 The hot water just temporarily takes the edge off.)

All joking aside, the worst part of my endo/fibroids is that they’ve taken something exceptionally dear to me. I can’t have sex without severe pain and bleeding for 2-5 days afterward. You can’t imagine the number of times I cry about how f**king stupid and unfair that is. I’m still ambivalent about having children, but chances are, I probably can’t have any of my own. That isn’t to say it’s impossible — the statistics just aren’t on my side. (Btw, if you do know somebody with fertility problems, PLEASE don’t bring it up unless they do. I’m perfectly fine talking about it, but I know MANY women who are very much NOT.)

This is probably the most important thing to note if you ever write about a character with endometriosis: we’ll never be cured. Hysterectomies can HELP and pregnancy can TEMPORARILY relieve symptoms, but endo will never go away entirely. People suggest home remedies all the time, and they’re always full of what they believe are helpful suggestions, but I’ll say this one more time: THESE THINGS CANNOT BE CURED. Whatever miracle you’ve heard about, we’ve probably tried it or ruled it out.

In conclusion, the best things you can do for a friend or family member who has endo/fibroids are . . .
1 – Do NOT diminish their pain. Give them a gentle hug and tell them you know it sucks. (I beg you, don’t give them health advice.)
2 – Be flexible with their scheduling. Pain can strike out of nowhere; just because they were okay to come to dinner this morning doesn’t mean they’ll still be fine 12 hours later.
3 – Know their favorite foods that don’t set off cramps. A well-timed bowl of pho or bottle of cranberry juice can turn my whole day around.
4 – Love them. I can’t stress this enough. Just love them, and you’ll be doing them a world of good.

If you’re still with me, thank you for reading this! I hope you learned something or understand something better. If any of this resonates with you, know that I’m sending you gigantic (gentle) hugs and praying the pain isn’t bad today for you.

Stay fiery, peeps.

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