I don’t normally do these kinds of blog posts, where they’re about more than just books, writing or history. I try to keep much of my personal life off the internet as much as I can, but I gotta admit that I’m having a little trouble mentally processing a recent diagnosis. I also thought it time to begin sharing my endometriosis story, because there are definitely more folks out there with this condition than I realized. And if we can’t talk about it, how will things ever get resolved?
Don’t worry – if this kind of post isn’t your cup of tea, I don’t think I’m going to become an advocate for this. Just needed to, well, talk.
I know endometriosis isn’t technically “curable,” nor is it a cancer (which I guess is a good thing). But what even is it? I still don’t really know, which is why I’m having a hard time mentally processing my own diagnosis. Not only do I have fibroids, but my endometriosis is at the most severe level. I have accepted the diagnosis as legit, ever present and life altering. But everything else? I haven’t quite gotten there yet…
The Lead Up
For years I’ve had problems. This may be TMI for some readers, but I’ve had a rough go when it comes to PMS. Not only did it begin early, but I had every bad symptom in the book. Wrap around cramping, even to my back, heavy cycles, headaches, the works. I was often “out of commission” and in the nurse’s station during school hours.
Fast forward to my mid to late 20s. Things got even worse, and I’d never heard the word “endometriosis” before. Thinking back, I have to wonder if this is when it began to develop. But I didn’t have health insurance, so I dealt with all the crazy things changing and moved on with life. It was kind of self care but I didn’t know what I was…caring myself against.
Jump ahead to this year, and I was done feeling how I was and currently am. I began having more bad days than good, and I could just feel that something other than bad PMS was going on. A few years ago I was actually in the hospital for bowel blockage, and that was the first time endo was put out there as a possible cause. Did I look into it then? No. Because I still didn’t have insurance and that visit had to be private pay.
Finally, after that I was able to get insurance – afford it, really – and I kept the OB/GYN they’d assigned me at the hospital. Several rounds of testing later it was discovered I have an orange-sized fibroid, which accounted for some of the issues I’d been having as of late. So I randomly chose a doctor at a local women’s hospital and it turned out he was one of the leading fibroid and general women’s health surgeons in the region.
Did I get lucky, or what?
Our first consultation was via video conference, which felt kind of weird. I’m a 90’s kid – we’re not used to things like Zoom and Teams. Well, I’m not. You’d think, as a Star Trek fan, I’d love this concept. But the kiddo inside me who used dial up and message boards still finds it quite foreign.
What I liked about it, however, is that I was still able to run my concerns by an actual doctor and receive a list of treatment options to choose from. He also didn’t try to steer me any which way, but let me do my own analysis, weigh options and go from there.
Due to the size of my fibroid (still didn’t know the endo was there at this time), I decided to go with a laparoscopic ablation. This procedure, developed from one used to treat liver issues, was to heat up the fibroid itself rather than going the extreme route of other methods.
Of course, the day of the surgery my blood pressure was quite high, but it always is right when I go into any doctor’s appointment. My anxiety skyrockets and they all look at me closely every time because my BP throws them off (white coat syndrome, I think they call it).
Since they hadn’t been doing this type of surgery for a while, and I was one of the first to get it, I had a literal team of doctors – more than usual, according to them – as well as some hospital big wigs in attendance. The only person’s voice I know I’d recognize later on is my anesthesiologist, and I really liked him as well. My surgeon was training the one who’ll take over his practice next year, and the third was for observation.
Unfortunately, they weren’t able to do the ablation, because that’s when they discovered my stage for endometriosis.
I almost wish they’d just done the ablation because, well, we were already in there. But I think my endo was so severe that they didn’t feel comfortable proceeding with that part of the surgery. They did, however, remove a cyst so they could test to confirm (and it was, of course, confirmed), and now I have to wait for my post-op chat with the surgeon.
But now I have something new to add to my file when I go in to my next annual checkup: endometriosis. And I’ll have to discuss what that may mean for other lower abdominal issues with my primary care physician, because I’ve already connected the endo to an issue I had earlier this year. Little did we know, right?!
With the official diagnosis still fresh in my mind, figuring out a game plan is next on the list. While I’ve already begun looking at anti-inflammatory diet options, I know there are so many other layers to this than just eating better. I really wanted to eat nothing but the bad stuff that first week of recovery, but then I actually felt disgusting after. Was it all in my head? Did the feelings actually get worse now that I knew the reasons why? I don’t know those answers yet.
Now that I know just how much my health insurance actually covers (seriously…that surgery would’ve set me back $50,000, and I think I’ve lost sleep these last two weeks due to not knowing how the claims were going to be processed). Y’all – get yourselves GOOD HEALTH INSURANCE. I cannot stress that enough! And choose a good hospital in which to get your procedures done because that absolutely will save you cash.
I am so so so grateful for what my insurance covered. Otherwise, every single paycheck from now until the day I die would have had to go towards it!
So not only do I plan to stick with this insurance for next year (even though I upped it to the highest plan so even more will be covered with all my future treatments), but I will most definitely work on changing some bad habits I’ve developed over the years.
I know this is all going to take time. One cannot change habits overnight. I know that, too. All too well! I think I’m just having trouble connecting all the dots and how this will affect my overall health.
I don’t think I’m going to do an “Endo” type blog post series, maybe just updates here or there. I hope y’all were okay with this brain dump today! Because that’s exactly what this post was: a brain dump.
Maybe brain dumps are good for the soul? Good for healing? Good for moving forward mentally with the plan (whatever that plan may be)? I wholeheartedly hope so!