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September 24, 2015

"Fine" Is A Process, Not A Place

Kate Hart
The shirt at left was on my drying rack when my oldest came in to tell me goodbye before school. "You know why that's my favorite shirt?" he asked. "Because I know you love coffee, but also because I really hope you get well someday."

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.
It was the worst headache I've ever had, which is saying something. I couldn't bend my neck to look at my newborn while I nursed because it hurt too much. It wasn't a migraine -- I've had enough of those to know -- but because I wasn't vomiting with pain, the doctors ruled out spinal headache, even though they'd remarked several times on how "tough" I was about everything. "You'd be sobbing if it was a spinal headache," they assured me. "And they're really rare." (Now I know the Mayo Clinic says they happen to 40% of those who undergo a spinal tap or spinal anesthesia.) Eventually they gave me a migraine drug that required me to pump and dump an entire bottle of breastmilk, and sent me home. "Let us know if it doesn't go away soon," they said.

It didn't.

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
For the next four years, I struggled with unexplained spotting and ridiculously long periods, hot flashes, crazy mood swings, and stomach upset of various kinds. I had chronic UTIs and bladder spasms. Other doctors varied my antidepressants, trying to get me stable, while my OBGYN gave me ultrasounds and birth control pills. I had an ovarian cyst or two, which was unpleasant but not dangerous. I went off the anti-depressant I'd taken for more than a decade, because no one seemed to believe that my stomach issues were related to my reproductive system. I was tired and my body hurt unpredictably, then worse, constantly.

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
Maybe this is all TMI. I don't know. This post started off as a response to Kiersten White's yearly PSA about ectopic pregnancy. I've always appreciated her candor and her dedication to making sure other women know the warning signs  -- because lord knows our high school health classes didn't bother to tell us any of this stuff. None of my dude friends, and few of the ladies, had any idea what my diagnosis meant; fewer still could have guessed the cause was even possible.

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.


  1. Would it be inappropriate for me to hug your uterus?


    1. My uterus hugs you back, but watch out. It's kind of tricky.

  2. This is SO MUCH how I feel. It freaks people out a bit that I have no compunction about broadcasting my medical history--which includes severe depression, epilepsy, aphasia, and OCD--on the Net. But without a whole lot of help from people who weren't in the medical community, I wouldn't have gotten to where I am now on the journey, so I feel like I need to pay that forward. Women, in particular, suffer from a whole lot more "invisible diseases" than men, and a ridiculously small amount of medical research is done on them. Even drugs that are FOR WOMEN are tested on men. So yes, I think to a lot of outsiders, it looks as if women spread TMI out there, but without each other, many of us would, literally, be dead. So I thank you for sharing your experience and hope that it will help someone else.

    1. Thanks, Laura. I definitely think of it as paying it forward too -- thank goodness other women shared so that I'm getting the chance as well.

  3. I think it needs to be talked about, especially because previous generations didn't talk about it--with each other, or with their doctors. My mom is at a stage where she needs to stay on top of her health, but takes what the doctor says (or doesn't say) as gospel. It's so frustrating to me--did she learn nothing from my experiences?

    Five years of neurological symptoms that had gotten so bad they thought I was getting MS, so they finally ordered an MRI--"Hey, maybe that tumor in the spinal canal is responsible! I bet we should take that out." And it was a physical therapist who encouraged me to keep speaking up, because it was not consistent with the other pinched-nerve patients she saw.

    And don't get me started on the "Maybe you had Hashimoto's syndrome and we missed it for years--before you got the thyroid cancer."

    1. Ugh, so frustrating! I hope you can nudge your mom toward a more pro-active approach. {{hugs}}

  4. I think in general, doctors don't know much about autoimmune diseases, and it's really frustrating that if you have one, you probably have more. But I've never had a doctor suggest that fact- all of my diagnoses have come about from me doing internet research and from my mom recognizing that my symptoms are the same as hers. The first diagnosis I had was ulcerative colitis, then Hashimoto's, and now that I've tried for over two years to get pregnant I'll get a surgery soon to diagnose what I know is endometriosis. Endometriosis can also make it seem like you have the symptoms of a UTI- after doing all the tests they could think of, I actually had my doctor tell me my uncontrollable urge to pee all the time must be a psychological problem! It wasn't until after that that my mom told me- Oh yeah, I have that too- it's just endometriosis on your bladder. Crazy!

    1. It's amazing how laissez faire doctors can be about urinary symptoms. I basically got a list of things not to eat (on top of all the things I already couldn't eat) and was sent me on my way.

  5. Kate -- WOW! I didn't know. This is tough stuff. I'm sorry!


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