Anemic and Confused: Part 1

Last updated: March 2023

For over a year, rheumatoid arthritis has not been my biggest health concern. (I know, right?!) My biggest health issue has been anemia; severe, debilitating anemia.

Experiencing abnormal menstrual bleeding

Do I know why I am anemic? Why, yes, I do! Since April 2021, I have experienced abnormal menses. Every month, I bleed for 3 weeks. You read that right: I bleed 75% of each month, every month.

But here’s the interesting thing: My actual period is still normal. It comes at the same time every month, lasts the same amount of days, and ends like clockwork. The rest of the menses can occur in a whole 2-week chunk, or I may bleed for a few days, stop for 12-24 hours, then restart.

I am in constant fear that I will bleed unexpectedly through my pants (hello, middle school flashbacks), so I just wear a menstrual cup all the time.

The abnormalities started with methotrexate

Now, I know you are sitting there reading this and thinking, "Monica, why in the world have you let this go on for so long?" And, to be honest, I am not sure. For the first 3 months, I wasn’t quite sure anything was wrong.

I have had menstrual abnormalities since starting methotrexate in 2010. And, try as I might to keep tabs on everything pertaining to my health, I fail miserably at marking when I bleed. So, for many months, while I had an inkling something was off, I didn’t have anything to look back on. And, up until this point, the bleeding was substantial but not "period-heavy."

I was severely anemic and needed iron infusions

Fast forward to August 2022, when I moved. It was go-go-go. I landed in my new home, immediately started classes, and hit the ground running. September came and my period normalized. I only bled for 7 days.

I’m not complaining. But October came and my menstruation went haywire again. I felt fatigued (no kidding) so I tried hormonal birth control pills. Get this: They made me bleed every day. So, I stopped them. But, at this point, I was severely anemic and needed iron infusions.

The infusions could not keep up with my blood loss

Due to scheduling conflicts, I could not sit for the infusions until February 2022. I had 3 of them (1 a month for 3 months) and my blood levels got better, but only just.

Soon after, my hematocrit and hemoglobin plummeted again. My primary care provider sent me to a gynecologist because even if I sat for an infusion every month, it couldn’t keep up with the blood loss.

Every test was normal, so why was I bleeding?

My gynecologist performed a pelvic exam, ran ALL the blood work, and did an ultrasound. Everything. Was. Normal. My thyroid was good, my hormones were normal, I had no cysts or tumors anywhere near my reproductive organs. So, why was I bleeding?

Now, at this point, I will venture to say that I’m critical. I honestly don’t know how my period is still normal! I faint after I eat, and every time I stand up, my vision swims. I have no focus ability and I’m just plain knackered.

I had a slow summer, so it didn’t really matter, but with starting school again, I need my brain! What are my choices? In Part 2, I will discuss my options and next steps.

Part 2 of this article is available here.

Have you experienced abnormal periods while in treatment for RA? Share with us in the comments below.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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