Nothing like a knife to the heart to start your week.
I haven't told him that his birth is what started this line of falling dominoes I call my health. It's not his fault -- he didn't ask to be born. We were the ones that desperately wanted a child, after months of fertility treatments and miscarriage scares. When it came time for an emergency c-section, he was my only concern, and I wouldn't do things differently, even knowing what I do now.
But someone should have warned me regardless.
My oldest was breech, a fact the OB nurses didn't discover until I was already at 10 centimeters. He was born with a bright red circle on his butt, where he was trapped against my admittedly small pelvic bones, but otherwise he was healthy and happy. My own recovery went quickly, and I received compliments on how "tough" I was, both during and after surgery. And as an added bonus, I got to tell people the disgusting story of complaining mid-surgery that I couldn't breathe, only for my husband to inform me that my internal organs were temporarily sitting on my chest.
So you know. Win win.
I switched doctors, though. Someone in the month of weekly checkups before birth should have caught the fact that my baby was upside down (or more accurately, not upside down like he should have been.) And my new doctor's confidence in me was encouraging. "You already know the routine," she said, when I inquired about more rounds of infertility. "Just start trying whenever you feel like it and let me know if you need me."
Miraculously, we didn't -- two months of trying and voila, another baby. But litigation being what it was at the time, only one area doctor was allowing VBACs. His office is 45 minutes away, and has the dubious distinction of serving the Duggar family, so I elected to stay with my new doctor and have the then-recommended repeat c-section. It was scheduled for March 4, so naturally I woke up with contractions on the 1st and labored to 7cm before they wheeled me into surgery. But everything went fine, and soon we had two beautiful boys.
I also had a headache.
|Me before c-section, ready to be|
tough. God forbid we be otherwise.
I ended up nursing my newborn in the ER while I waited for a blood patch that didn't help. Eventually I consumed enough caffeine to keep a small nation awake for three weeks, and the headache abated, but the memory of those first painful days with my youngest didn't.
Still. I had "toughed" it out. As always.
About a year later, the other problems became evident.
It started with a peculiar lump on my c-section scar -- under the skin, a little painful, and making it difficult to wear anything tight on my waist. "It's probably a hernia," my OBGYN said, and she sent me to a surgeon. "It's definitely a hernia," the surgeon said, and he cut me open.
It was not a hernia. It was endometrial tissue that had escaped my incision. "A much easier surgery," he assured me, "and not likely to come back."
|Ready for round two|
I could barely get off the couch most days, much less parent those kids I wanted so badly.
Meanwhile my OBGYN's confidence in me became a problem. "What do you want to try?" is a great question, but only once you've given the patient some options. When another lump appeared on the other end of my c-section scar, she sent me for a scan, but nothing showed up, despite the fact that it was easy to feel from the outside. When I finally insisted that maybe, just maybe, this was related to my earlier experience with endometrial tissue, which rarely shows up on scans, my OBGYN's response was unexpected: "We can do laparoscopic surgery, but I can't remove the lump that way. And if it doesn't work, we'll probably have to do Lupron [which can cause premature menopause] or a hysterectomy."
I got a new doctor.
Long story short, the new doctor diagnosed me with endometriosis right away. We did laparoscopic surgery to remove the (surprise!) endometrial tissue outside my uterus, and he reopened my c-section incision yet again to remove intruding tissue there. He gave me a progestin-only birth control to hopefully contain future growths, and though the chronic UTIs and bladder spasms weren't endo-related, he gave me a solution to those too.
Things are not 100% better, but I'm slowly getting my depression meds re-calibrated, and once that's on the level, we'll address the remaining stomach issues. I try not to focus on the four years I could have been fighting this disease. I try to focus on the improvements I have now, and the things I can do in the future, now that I'm not exhausted 24/7.
I'm hoping maybe my oldest will get his wish, or at least a version of it: I'm going to be fine. It's just that "fine" is an ongoing process. And it always will be for me.
The obvious question here: Why didn't I get a new doctor earlier?
In retrospect, it seems crazy. But the thing was: I had already gotten a new doctor, and I liked her a great deal. Yes, she had the same voice as my then-agent, which was slightly disconcerting, but otherwise, we had a hugging-level relationship. She asked me questions and let me chart my own course of treatment, which is important.
And yes, I'll admit: I didn't want to hurt her feelings. I didn't want to be a whiner.
I didn't want to admit I wasn't tough.
But eventually I realized that there's only so much pain you can ignore -- and that there's a difference between someone who listens and someone who really hears you.
|Fun, finally, after surgery #4|
So maybe it's NEI: Not Enough Information. Women shouldn't have to splatter their medical histories all over the internet, but without their voices, I wouldn't have known to leave my doctors. I wouldn't have known that endometriosis could be caused by c-sections, or that it's possible the diagnosis was missed even during infertility. I wouldn't have known that it's not normal to be violently sick to your stomach during your period, or that menstrual cramps can extend to your knees, or that I was never going to get pregnant with a 30 day luteal phase.
You can't know what it is you don't know, and when even doctors aren't willing to tell you ("hey, this procedure we insisted on might actually have caused your issues"), then we have to tell each other. We have to speak up and we have to be heard, but equally important: we have to hear that it will be okay. That even if you didn't get the information you needed originally, things can still be fine. Maybe not the fine you expected. Maybe not even the fine you want right now.
But things don't have to be tough forever. And neither do you.