The pain monster

If I were to give the Universe’s writers’ room a note on this season of the show called My Life, it might say, simply: This feels like a bit much. Why force her to go through the emotional roller coaster of a miscarriage in order to discover the cyst? Seems overly cruel and unrealistic. Maybe save the miscarriage for another season. Don’t burn all your plot points at once.

But the writers are the pros, not me.

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The past two weeks have been something.

Where to start? I’m fighting exhaustion, brain fog, frustration, etc., to even write this.

I suppose the story starts with the miscarriage, which I wrote about here.

On Tuesday evening (Oct. 13) I started feeling some abdominal pain — what felt to me like an endo flare-up. I took ibuprofen and made friends with the heating pad and tried to knock it back like I always do. I called my gynecologist’s office and told the nurse about the miscarriage and the pain, and asked if I needed to come in to confirm that it was progressing normally. She told me just go to the ER if I bled through a pad an hour or if I had sharp pain (the latter of which could indicate an ectopic pregnancy). Otherwise my doctor was out of town and they couldn’t do anything (but she was sorry for my loss). I asked her if it was possible that a miscarriage and the subsequent hormone shift could cause an endo flare-up, and she said it could, sure. So I thought, OK, that’s what’s I’m dealing with, I guess.

But the pain didn’t budge. It got worse. I started thinking maybe it could be ectopic, and that maybe I just wasn’t identifying “sharp” pains correctly. I had gotten a couple of localized pains in my pelvic region, including one that shot up from one point clear to my shoulder. So maybe I was just, again, not sure what exactly I was feeling, or maybe not describing it in a way that matched the supposed symptoms?

Wednesday night around midnight, I got out of bed after a couple of hours of trying to sleep but being unable to because of the pain. I woke Richard up and told him I thought something was more wrong than before, and that I didn’t know what to do. I was panting to control the pain, which would not let up and felt both localized and sharp and like it covered my entire abdomen.

Richard’s mom came to stay with Holden (who was asleep) and Richard dropped me off at St. Thomas — they wouldn’t let him come inside because of COVID — and after a few minutes they led me back to my room. I told them all about the miscarriage, the normal cramping during the miscarriage, and then the onset of the pelvic/abdominal pain that would not quit a couple of days after the onset of the miscarriage. They gave me a hit of morphine for the pain and scheduled me for an abdominal ultrasound and a transvaginal ultrasound. Both were uncomfortable, especially the transvaginal, as having a wand poke your cervix while you’re having pelvic pain is 100 percent not what you want. The doctor came back to do a quick check of my cervix, and in order to get a good look, he turned a plastic bed pan upside down and had me hoist my rear up on that, since the bed wouldn’t adjust. It was uncomfortable and stupid.

I laid in bed for an hour or more, trying to rest, as I waited on the results of the scans. I was hooked up to an IV and an oxygen monitor and I had to pee so insanely badly, very suddenly, but I didn’t know how to call a nurse and I couldn’t move. In desperation, I inched my machinery over toward the door and managed to open it just enough to see a security guard passing by. I got his attention and asked him to please get a nurse, who came and unhooked me and showed me where the call button had been hidden behind the headboard. I realized then that some form of onboarding when you come to the ER would be nice for those of us who are lucky enough not to be regulars.

The doctor finally came in and told me the ultrasound revealed a 7-centimeter mass on my right ovary — presumably an endometrioma (too large to be an ectopic mass). This was a gutting surprise. The last time an ultrasound found a 7-centimeter endometrioma on my ovary, that thing grew to 10 centimeters within a couple of months and I was fast tracked for surgery to get the cyst and the ovary out. As I put on my clothes and went through the discharge process, I realized that this discovery likely meant the same outcome, which would mean instant menopause and a tectonic shift in my life I did not feel ready for.

At 4 a.m. I left the hospital with a prescription for pain pills and instructions to get into the gyno office ASAP to game plan what to do next. My gynecologist (Dr. Morgan) was out of town so I scheduled a Friday morning appointment with Dr. Draughn — the doctor who’d been on call during my ER stay. I slept all day Thursday.

Friday morning Dr. Draughn palpated my abdomen and it was tender and sensitive. I could feel pain but it was dull due to the painkillers. He advised that I get with Dr. Morgan as soon as she was back in town, but that it could be any number of things causing the pain. I asked if the hormone bounce from the miscarriage could feed an endometriosis flare-up but he said not really, at least not for a few months. (The nurse a few days prior had said yes, that could happen.) I asked him what I should do if the pain came back over the weekend and he told me I’d have to go back to the ER because his office “can’t do anything about that.” I had saved three pain pills just in case; the last one I had taken was at 4 a.m. Friday, a few hours before the appointment.

I coasted for most of Friday but started to feel chills and muscle aches that evening. Richard and I halfway figured it was an effect of coming off the pain pills, which I had been taking every six hours. I went to bed and woke up around midnight, blazing hot. I took my temperature and it was 100.7. I took some ibuprofen and laid down on the couch to try and cool down.

A few moments after I laid down, I was hit with abdominal pain that had me panting, writhing, and on all fours on the floor, trying to find a position to lessen the pain. It was this horrific ripping sensation from my ribs to my groin, throbbing, pulsing, taking my breath and my energy. I tried to call out to Richard, who was asleep in bed, but got Sarge’s attention instead. He came into the living room and saw me on the floor crying and started barking at me, alarmed. I was finally able to raise my voice enough to get Richard’s attention and he came out to check on me. It was unrelenting. I’m pretty sure I wailed, “I want to DIE” more than once and threatened to haunt every motherfucker involved in sending me home with no solutions and no pain medication to get me through the weekend. Richard gave me two of my remaining three pills and sat with me as we waited for them to kick in. They finally did, and I felt the pain decrescendo enough that I could lie down and go to sleep.

Saturday morning I woke up and took the last pill so as to not tempt fate. But I could tell all day that something was not right, and the pain was just waiting to break through again. I thought maybe constipation was contributing to the pain so I drank some mag citrate and waited for it to kick in while we debated whether to go back to the ER. The pain finally did break through and just hummed as loudly as it could through my entire gut. I had to take shallow breaths; every breath drove my lungs down into a painful, tender place. Movements hurt. I started thinking maybe I was having some other non-reproductive issue: Appendicitis, maybe. Something that could be masked by painkillers and ibuprofen keeping my fever down.

Richard called my gyno office to talk to the on-call doctor, who said there was nothing they could do and we should go to the ER. He also called the office of the surgeon who had removed my left ovary a few years ago, to see if we could get some help from them. He talked to the resident, who said they could only see me with a referral from my gyno, but that she would definitely go to the ER because my pain level did not sound right and indicated something else might be going on.

Around 2 p.m. we decided enough was enough and went back to the ER for more scans to make sure something else wasn’t causing the pain. I was there for about seven hours, sitting quietly in my room alone while the ER buzzed with chaos around me. The doctor and nurse miscommunicated, apparently, and I sat for about an hour without any pain relief. (It is very hard to advocate for yourself in the ER alone when you are in bad pain.) The finally dosed me — this time with dilaudid — which made me feel very loopy but briefly knocked back the pain.

They sent me for a CT scan, and came back and cleared me of problems with my appendix and gall bladder. They also said the endometrioma looked stable — no leaks, ruptures, or torsion. They gave me a shot of toradol — an anti-inflammatory — and a prescription for seven 5 mg doses of hydrocodone. Why seven? Who can know?

Monday morning I went to see Dr. Morgan, my regular gynecologist, to fill her in on all that had happened since she’d been out. She said my falling HCG levels indicated that I wasn’t dealing with remnant tissue (that would require a D&C) or an ectopic pregnancy (which I more or less already knew from the scans), but that they would want to draw blood again to ensure the levels fell to zero. She said the miscarriage was likely because of my age. And she said the pain likely was an inflammatory response at work, so she prescribed me a course of oral toradol. I asked for a referral to Dr. Stany, the surgeon.

We got home Monday afternoon and I ate a chicken breast and a handful of almonds and went to lie down. As soon as my head hit the pillow, I got walloped by pain again — this time in waves like contractions every two minutes or so, stabbing down into my pelvis and across my abdomen. A couple of times radiating backward and spiraling around my kidneys. More screaming, writhing, crying, trying to find a way to carry my body that would provide relief. All fours, on my knees, sitting on my haunches. Another pain pill (I had just had one three hours prior), more cussing. This time we tried to use a sheet to bind my stomach to provide counter pressure, but that didn’t really work and just made me feel claustrophobic. Half an hour later, the pain had dulled and I was able to rest.

We were able — after harassing my gyno office for a day and a half to actually complete the referral — to get in with Dr. Stany, the surgeon, on Wednesday (Oct. 21). He said it was possible that the endometrioma was twisting intermittently and causing pain, but that it wasn’t doing so during the scans. Either way, it needs to come out, and he can zap other endo lesions while he’s in there. But then he told us that he was fairly confident he could remove the cyst and save the ovary, which was a happy surprise — both because I do not want to move into menopause if I don’t have to, and because that means we could keep trying to conceive. (He did inform us that we are not a candidate for egg freezing because the ovary is already compromised. So we would not be able to freeze eggs and have the ovary removed and still try to get pregnant using my eggs.)

So I’ve scheduled surgery for a little more than a week from now, and am managing the pain in the meantime by saving my last four painkillers and feeling paranoid and on edge that every twinge and cramp is going to blossom into a pain monster. I am finishing my course of toradol, so I can’t take any other NSAIDs like ibuprofen.

All of this has been exhausting and demoralizing. Time after time we go into an office to describe what’s going on and the provider says, “I’m sorry for your loss,” which is kind, but my immediate problem is not the miscarriage. I picture two boxes and the miscarriage is in one and this pain monster is in the other. This miscarriage box is taped and labeled and the pain monster box is teeming, tentacles bursting from the corners, blood pouring out. I’m glad I had the chance to write about the miscarriage last week, before the pain set in.

My insides periodically feel like they are trying to rip and stab their way out of me, and I don’t seem to have any control over or understanding of when that’s going to happen. I can’t suss out the triggers and I’m having to double dose narcotics to put a dent in the pain. I don’t like that and I don’t want that. I have seen what opioid addiction does to people and that is not the life I choose. I know my issues are run of the mill, everyday occurrences for medical professionals, but I want to sense some urgency from even one of them to help me. I was clearly not OK and they just kept sending me home, telling me to go see someone else.

I hope the surgery will solve the pain issues, but I know it’s inevitable if I don’t have a full hysterectomy this time that I will need to have more surgery in the coming years — to mitigate endo pain, to remove another inevitable endometrioma, to remove my uterus. In fact, there is a chance that when I wake up from surgery, I will learn that the surgeon could not save the ovary and that I will be entering menopause and doing hormone replacement therapy and the whole deal. There’s so much I don’t know about menopause and frankly it’s all scary. I want to be rational and not fearful. I need to read more and get educated about it.

It just feels so soon. I’m not ready. But I suppose I have never been ready for anything and yet I’m still here.