My endoversary
I’m posting this on my 36th birthday, but I wrote it yesterday, on my first endoversary.
You’ve read correctly—I made up a term for celebrating the day that you are FINALLY diagnosed with endometriosis. Why? I’m so glad you’ve asked. But first, I’ll back up a bit.
2019 was a year of terrible health issues for me that all began on March 31st with the car accident that broke my arm, made me get over my fear of surgery when it had to be repaired, and made me hit the max on my out of pocket costs for my health insurance. Knowing that ANYTHING else I needed medically would be 100% covered by the bastards at Blue Cross Blue Shield, I started checking out every substantial health worry I’ve ever had that I ignored (primarily because of fears of cost)…spoiler alert, by my goal date of 12/31/19, I had completed 2 surgeries, run a course of physical therapy, had 1 concerning mole removed, treated 2 other distinct skin conditions, acquired 2 new medical devises as a part of my routine life, and picked up 2 more daily prescriptions and several other medically advised lifestyle adaptations.
But I finally got the full picture of myself as someone who lives w/ managing 4 chronic, and often overlapping, illnesses every day, wheeeee!
The biggest of these realizations came from having my GP take a careful look at my ER MRI for any conditions that an emergency physician wouldn’t have honed in on. (Pro tip: if you’re going to pay thousands of dollars for an MRI, HAVE IT REPURPOSED and make sure you take action on ANYTHING worrisome in there, right?) So that led to the discovery of some growths on my ovaries that I was eventually referred to my gyno to figure out. After an 2 rounds of ultra sounding, the revelation was: a grapefruit sized growth on my right ovary and several other smaller ones all around both. After a review of all the issues I’d been talking with her over the years, my gyno felt it was clear, one year ago (9/23/19), that I had a whole abdomen full of raging endometriosis.
It’s been 12 months, 6 gyno office visits, 2 in office procedures, 1 out patient surgery, and 2 different treatment plans (the second one has stuck so far) since.
I’ve learned so much about my own body over this year. And endometriosis generally. I’ve come to understand how a lot of health things I experienced as far back as 2013 was endometriosis. That’s not uncommon, in fact it takes the average person with endo 8 years to get a proper diagnosis.
Life after diagnosis is not much better for us, I’m afraid. Treating endometriosis is complicated and it’s not well understood enough, to my satisfaction at least. I was first prescribed the only medication currently available for it specifically, which is new to the market as of 2018……but it negatively affected my fragile mental health. (One of its known side effects is anxiety and as someone being actively treated and known as having GAD, I shouldn’t have been prescribed it, but I digress.)
The stigma about uteruses and periods and THINGS RELATED TO VAGINAS 😱😱 contribute to the unnecessarily long time between symptoms and treatment. No matter how imperfect current treatments are (I hope some smart doctors are working on this) people deserve the knowledge of what is happening to them so that it can be addressed.
So that’s why I talk about my endo every so often. Symptoms vary wildly person to person, so it’s important to hear the variety. I’ve been very lucky because most people experience endo primarily pretending as a LOT of debilitating abdomen and pelvic pain and mine was only sporadic. But my biggest sign was that I had truly unhealthily heavy periods for years and frequent spotting in between. I knew what I was experiencing was concerning, but I didn’t press to find answers. As you heard, I talked about it with my doctor some over the years, very lightly, but even after that we ended up thinking it was normal…because sometimes periods do get heavier with age. And my spotting went away eventually.
Here’s the brass tacks: I didn’t have the full context to know that no one’s flow should fill a large Diva cup in 2 hours and have that rate for nearly 2 straight days, of a 4 day period. That’s VERY not normal, but no one was talking about their flow in such concrete terms. So I am.
The last thing I want to share on my endoversary is that I have shame about even writing about all of this too. I am a highly educated woman who has taken multiple medical biology courses and taught basic reproductive health to teen girls for like 4 years. I preach being in touch with your body and trusting self-knowledge. I was asked every awkward uterus related question under the sun and did so much research to always have good answers by next class.
(Somewhat embarrassingly I will also admit) I was even a Top Contributor on Yahoo Answers Women’s Health (misnomer aside) for a few years and ridiculously active on the Menstrual Cup Livejournal community around the same time. Suffice it to say, I “knew” lots of information. I “understood” it’s really important for someone like me (fat female w/ chronic illnesses) to insist on being listened to in medical settings because I’m likely to have my concerns dismissed. I “knew” all of this, but I didn’t really GET. IT. YET.
I get all of it now. I can see how I was steamrolled by lightly negligent healthcare providers few years (I had gyno hopped for a bit, but circled back around to someone I was originally seeing in 2013 for when I finally got this diagnosis/treatment.) And even though I carry several things that make me very, very privileged in healthcare (white, documented, has decent insurance) I ran into these walls so I know it’s infinitely worse for my counterparts who are black, undocumented, uninsured, etc.
Next time, I can remember the intuitive “something’s not right…something’s not right” and listen better and ARTICULATE/SELF-ADVOCATE better.
Anyway, I am thankfully now I am fairly well treated by an IUD. I don’t “like” it and I didn’t want it, but am feeling much better than before and at least my monster periods are dead. Or at least manageable, thank god.