It Was Not Normal

I’ve decided to open up about my health ordeal. I’d say it’s “recent,” but that really isn’t the case. Only the surgery piece was recent.

Warning: I’m going to address some health topics specific to females that may make some readers uncomfortable. If the prospect bothers you, feel free to skip this blog, and I’ll see you again next week with more of my usual content.

Originally, I wasn’t going to post anything about this. Then, a couple of weeks ago, E.L. Lyons, an author I’m acquainted with on Twitter, shared a thread about some of the unique challenges women face in publishing, and it included mention of health issues that our male counterparts don’t have to deal with. (You can read the entire thread here, if you’d like: June 25 thread on promoting women in publishing.)

I read her thread a few times and continued to think about it all afternoon. So much of it resonated with me.

I decided I would write this post. I shouldn’t be afraid to share my story, just because discussion of female health issues makes some people uncomfortable. I shouldn’t be ashamed of who I am or what I’ve been through—I’m not the only one who has dealt with this exact problem—and I certainly shouldn’t be hesitant to talk about something that is likely a fluke of genetics with a dose of bad luck thrown in. Genetics isn’t anyone’s fault, after all, and everyone has some gene or other that will become problematic at some point in their lives.

So here goes…

This will probably come as a surprise to many, but the issues that led up to my surgery in May started almost a decade ago. Yes, it was a long time. Yes, I’ve been frustrated and uncomfortable, and for many of those years, I didn’t think there was anything I could do. I just dealt with it, because I thought it was my only option. My primary care physician told me repeatedly that what I was experiencing was “just due to age” and that I shouldn’t worry about it (even though the first instance of this comment came when I was in my early thirties.)

As many of you know, I’m a scientist. My specialty is in microbiology. I know bacteria, mold, yeast… But I’m not a doctor. I didn’t take anatomy classes in school (not a fan of dissections or cadavers), and my biology classes were focused more on the tiny things that can make us sick, rather than malfunctioning organs. So I trusted the doctor.

Even when my monthly cycles became increasingly erratic and more painful. Even when changing my diet or exercise routines didn’t help alleviate my discomfort. Things kept getting worse, I kept bringing up my concerns, and continued to get the same response. “Don’t worry. It’s normal,” the doctor said.

But she knew better than I did, or so I believed at the time. If something was really off, she’d agree to look into it, right? That’s her job, after all, and she has expertise that I certainly lack. I went years thinking I just had bad luck with my periods, that nothing was wrong.

It turns out, what I was experiencing was not normal. In hindsight, I should have sought a second opinion years ago.

Why did I wait so long? As I said, I trusted that doctor, and if I was only uncomfortable for a few days each month, I could deal with it. Then the Covid pandemic happened, and we all know how that went.

What finally prompted me to seek a second opinion was two-fold: First, there was a random bleed four days after my cycle had finished for the month. And this wasn’t a small one. (Thankfully I was at home at the time.) That shouldn’t happen.

The second thing was that I could feel a solid mass in my abdomen. And I don’t mean something just felt off; I could literally feel it if I touched my hand to the area. That was the part that scared me the most. For a while, I’d feel it intermittently, then I couldn’t find it at all for days…then it would be back. That isn’t normal, either.

I didn’t know if the mass was related to my other issues, but I suspected based on the location that it was. And I’d be damned if I went back to that doctor who kept trying to brush me off. If she couldn’t be bothered to listen to me when I brought up a legitimate concern—several years in a row!—then she wasn’t going to get my business any more. I was done.

So I decided to go to a specialist. I hadn’t tried that before, because my insurance charges me more for those visits than if I went to a family practice. But I needed to know what was going on. I knew it wasn’t normal, and at forty years old, it shouldn’t have been age-related and ongoing for almost nine years.

This past February was a stressful month for me. The bleeding incident happened at the beginning of the month, and I did a bit of research that night on what my options for a specialist were. I was able to get an appointment the same week, and the gynecologist I saw knew right away that something was wrong. Before she even got to the real exam. That abdominal mass I mentioned was present that day.

I was told there were two possibilities, but it would require more testing. The first and more likely scenario was uterine fibroids (benign tumors that grow in the uterine wall.) The other, scarier, outcome was cancer. It was far less likely with less than a 5% chance, but couldn’t be ruled out at the time.

I was scheduled for a follow-up appointment three weeks later, and by that time, the mass had grown. It didn’t disappear any more. I could feel it all of the time, and it was getting really uncomfortable. But I knew when that second appointment came, I’d finally have an answer.

But having to wait three weeks to know for sure was awful. My mind played what-if scenarios constantly. I didn’t sleep well (partly because I was worried, and partly because that mass made itself know every time I moved around.) I had a book release planned February 27, and stubborn as I am, I refused to back out of it and did an admittedly horrible job of promoting my book, even though I think it’s one of my best (it was Serpentus, for those interested.)

When that second appointment finally arrived, I had my diagnosis: Extensive uterine fibroids. (There’s a good informational page at the Mayo Clinic’s website about fibroids here: Uterine Fibroids: Overview.)

There were at least five the ultrasound technician could see, and they were all large. That explains the mass… And the bleeding… And the erratic cycles, the pain, all the years of weird and unpleasant symptoms that my first doctor tried to pass off as “normal.”

Side note: I was asked several times during my various appointments this spring if I had a family history of fibroids. The answer is, I don’t know. There’s a genetic predisposition toward having them in most cases, but I have no idea if that’s true for me.

Typically, there are other methods to deal with fibroids besides surgery. Mine were too large for hormone therapy to work, and the doctor was pretty sure if they just tried to scrape the problematic ones out, they’d grow back. My only option was surgery. A hysterectomy.

My husband and I decided years ago that we didn’t want to have kids, so I wasn’t upset by the prospect. And in a way, that decision was a blessing. When I met with the surgeon two weeks before the surgery date, she told me if we had been trying, it was very likely I would have miscarried over and over again. That would have been heartbreaking, and even writing this now, the thought brings me to tears. It was fortunate we decided never to try.

My surgery went as well as expected, but I had some surprises when I received the pathologist’s report afterwards. There had been more than five fibroids. There had been nine, the largest 10.1 cm in diameter (that’s about 4 inches, or the size of a navel orange.) They took 2.3 pounds of tissue in the process, just over four times the average for this surgery.

It was a lot, the recovery has not been easy, but as I’m writing this, I can tell you I feel so much better than I did earlier this year. (I had a great surgeon by the way, and she was able to do the procedure via laparoscopy, though I was warned beforehand there was a chance she’d have to make a larger incision, like a c-section, if the laparoscopy didn’t work. My recovery would have taken longer and been a lot more painful, and I’m so grateful she didn’t have to resort to that.) And my husband has been incredibly supportive through all of this, as has my immediate family and my two best friends. I’m lucky to have them all in my life.

But long story short, what I was going through was not normal. (And I’m still angry with that first doctor. I don’t like being dismissed and ignored, and this wasn’t a little problem. I will not be going back to them ever again.)

If you take away anything from my story, I hope it’s this: If you think something is wrong with your body and a doctor tells you not to worry, that it’s normal, get a second opinion. Go to a specialist if you have to. Don’t suffer for years like I did, because it’s not worth it—and the doctor telling you that it’s nothing could very well be wrong.

End note: I’m now about two months past my surgery. The recovery took a lot more than I was anticipating—I’m not that old, really, and I was pretty healthy otherwise—so the actual time required to get back to normal took my by surprise. But after years of discomfort and pain, I think the surgery was absolutely worth it. I’m feeling better now than I have in a very long time.