Doctor's Orders

Making the most of the best care you can get

The opening narrative for this article was written by a member of the trans community who had bottom surgery more than five years ago. She approached me privately, wanting to share this story, but not comfortable with it being publicly attached to her identity. If she someday changes her mind, this article will be updated to reflect her identity.

The reason I'm so outspoken on the "follow the advice closely" wagon is that I didn't. My post-surgical behavior is littered with the ways in which I didn't pay attention to the doctor's advice, on the assumption I knew my body better than he did, and confident in my ability to exceed anyone else. I am, sometimes, a highly arrogant woman. Possibly somewhat racist too, as I wonder to this day if I’d have done the same with a white doctor, and not a Thai one. I’ll never know. 

So when he said "don't go shopping", I convinced myself at 10 days to take the monorail to the shopping district, so I could buy myself some books. I had run out of reading material, and figured my mental health mattered more than the doc's advice. 

I tore a scar open, got a minor infection, and still have a scar at the bottom of my left labium to this day. You would think this would’ve made the point to me. 

You would think incorrectly. 

I continued to spend more time than I should sitting up and walking around, and my swelling was accordingly slow going down. Gravity sucks. 

Two weeks after my surgery, I had a flight booked back to North America from Thailand. I should have rebooked, taken the hit on fees, and gone home a week or two later. I did not. 

See above re: arrogance. 

I took that flight, first a few hours to Hong Kong, then a short layover with a fair bit of movement between aircraft, and the long long flight over the Pacific and home. The flight was the killer. Crammed into an economy seat–another foolish choice; I should have upgraded, to hell with the cost, for the flight home–and with my mighty athletic thighs squeezing hard on my new bits, I caused more swelling. BAD swelling. By the time I got home, I was unable to dilate, because the swelling was so bad, and consequently it was too painful to even try, though I did. 

As a result, it took several days for the swelling to go down enough for me to start trying to dilate again. I emphasize trying. Go a week without dilation at that point, and you might as well give up. It wouldn't go in. 

I was deeply depressed by my own stupidity. Which led to the next problem: I couldn't tell my doctor, because I didn't want anyone to know how depressed I was, because I didn't want anyone to think for a second I was regretting my surgery. I wasn't, and never have. 

But I do regret just letting go on the dilation train at that point, because it was near-impossible still, very painful and sort of tearing-ish, because in the end it all collapsed. I have, officially, a diagnosis of "vaginal stenosis", which just means "she go bye-bye". 

Now. I have an appointment with my doctor to start the possible steps toward a revision. It was brought to my attention a few years ago that a peritoneal pull-through procedure could possibly restore this function, and I have slowly pursued this goal. Recently I got the requests for documentation of the issue and other such, so I'm gathering that up to apply to have the revision done. 

If I do, it's almost certainly going to mean a serious program of extraordinarily painful working-out, to lose enough weight to get them to take me on as a surgical patient at my age. I am fortunate to have a great heart, with a resting rate of 55, thanks to many years of athleticism both before and after transition. So I'm confident about that not being an issue, just painful, but with motivation, I can do it. 

The reason I tell you this is not to engender sympathy. It's to help you know what can happen if you think you know more than the doctor about what your body can do. You could be–gasp–wrong. I was. And I don't want any of you to have the same problem. 

The biggest variable

When trans people seek out gender-affirming surgery, we generally do more legwork than any other group of people getting ready for surgery. Just look at the proliferation of plastic surgery clinics in every city of any size at all for a sense of scale—but more, look at just how many people go under the knife for life-or-death surgeries with… some guy at the local hospital. On one level, it’s completely incomprehensible to me that most people treat these surgeries like this. On another?

Really, it makes perfect sense.

When we go in, we’ve been waiting our whole lives for that day, where we can go to sleep broken and wake up whole. It fits that we’d take the most diligent care to pick the best doctors we can, often waiting incredibly long times so we can be sure that we get the best results possible. We have long, detailed conversations with other trans folks, comb through entire databases of surgical results, doing everything we possibly can to make the most of these once-in-a-lifetime operations. It is, to us, the finish-line of a race we’ve spent our whole lives running.

The thing is, though… none of the conversations I’ve ever seen even glance at the 800-pound gorilla in the room. One variable goes beyond any other variable—yes, including doctor expertise—when it comes to getting the best possible results from our gender-affirming surgeries: our post-surgical care. Specifically, how closely we follow our doctors’ orders while we’re healing.

We are the biggest variable in how our surgeries turn out.

How it’s supposed to work

Let’s say you do the hard work and practice excellent patient self-advocacy to make sure you’re getting treatment that fits your body’s needs, not just a one-size plan dictated by a jerk doc. Instead, your doctor is responsive and engaged. Together, you talk about standards of care, your body and biology, and how you do and do not fit the model provided by the standard of care that the two of you are working with.

As a result, the two of you develop a detailed plan for your treatment, whether it’s surgical or medical, inpatient or outpatient. The two of you agree to use it to plot out how things are going to go as you move forward, and this plan can be especially important if you have other medical conditions that you need to keep track of, like diabetes or a heart condition, because it makes sure that nothing important to either of you gets forgotten in the shuffle.

This plan can have a couple of different names, depending on whether we’re talking about nursing care or surgical care or psychological care, but the most common one is the nursing version: a care plan. When things are pretty simple, your doctor will give you some simple instructions, like “take this medication twice a day with food,” and hand you a little reminder sheet to help educate you. When it’s more complicated, they’ll give you a packet with instructions, and maybe a specific action sheet with some education before you leave.

But, sooner or later, it’ll be just you, your medical situation, and some paperwork…. and how well you stick to that care plan.

That’s called adherence.

Adherence

While some doctors still refer to adherence as compliance, which is an outdated version of the idea focused on a patient following a doctor’s dictates rather than a plan of care built collaboratively with them, adherence makes a huge difference in how things will turn out for you in your surgical recovery or your transition more generally. How big?

A 26 percentage point difference between a bad or good outcome, after correcting for age, illness, the reason for needing care—you name it.

Adherence is best-studied when it comes to taking medication for a condition, because studying how well adhering to a care plan after surgery is a lot more complicated—after all, there’s a lot more going on to keep track of than “did you take your pills on time every day?” Still, studies consistently find that better adherence to post-operative instructions result in much better outcomes for patients, regardless of the type of surgery they study. Depending on the study, high adherence reduces complications, meaning the bad stuff that sometimes happens when you’re recovering from surgery, by between 30% and 60%. Best of all, the patients who are fully adherent, meaning that they followed 100% of their care plan, tend to have virtually identical, pretty-much-ideal results.

To put it a little more simply? Most bad outcomes, either from surgery or from medication, are because someone didn’t do what they needed to.

Now, that’s not always because a patient chose to not do what they were supposed to do. Plenty of doctors aren’t that great at making themselves clear, which can cause non-adherence just as easily. This is one of the reasons why patient self-advocacy is so important—you should never, ever leave the doctor’s office before a surgery until you’re absolutely certain that you know exactly what to do and when.

Don’t worry about taking up extra time, either. They want you to take up that extra time. It’ll take a lot more time off of their calendar if you have to come back for a revision or, even worse, you have to get readmitted to the hospital because something went really wrong.

And, the thing is? You don’t have to do this alone.

Let’s take our dear friend from the opening anecdote. She made some tough choices, but the very first one, the one that kicked off everything else? She wanted a couple of new books, because she’d run out of things to do. That’s really understandable. What was she supposed to do, sit there in her room, alone, and stare at Thai TV that she didn’t have a hope of understanding? Being alone and bored and letting the pain and loneliness mount within her? Nobody could’ve borne that.

If she’d had a friend, a family member, someone to help take care of her, who she could’ve sent to the bookstore in her place? None of those things would’ve happened.

When we’re sent home from the hospital, we’re never ready to go back to life as usual. We’re not supposed to be ready to go back to life as usual yet. And for a lot of us, taking care of ourselves when we’re hurting and recently operated-on is just plain hard, on a purely physical level. Having someone there with you, who can do stupid, basic things like cook dinner, help you get your meds, or run out and buy you a new book, can make an enormous difference in how adherent you’re able to be as you recover.

So yeah. Take your time. Make sure you’re ready. And bring your care team with you to your pre-operative meetings so they can ask the same questions you’re asking, and get ready to help you be adherent.

Keeping on top of things

Taking care of yourself after surgery is a full-time job. After both of my top surgeries, I had a really complicated, round-the-clock, four-medication care plan to follow. Two drugs needed to be taken every four hours. One needed to be taken every six. And one needed to be taken every eight, with food. Missing or doubling up on any of those doses would’ve been pretty darn bad.

Now, I’m neurodivergent, but I don’t have ADHD. I’m good at following doctors’ instructions too—I’m a technical writer from a family with nurses in it, so I’d better be! But after my first top surgery, even I found myself overwhelmed with following my medication schedule after only a couple of doses, because I was tired, in pain, having a whole lot of Gender Feels, and had to juggle which meds to take when. Thank god for B—, who held it together for me that first day.

That evening, I reached out to a friend through social media to vent about my struggles, and they, thank goodness, were ADHD. They’d struggled with taking their meds on time their whole life, and started gushing to me about how this app they were recommending had made things much, much better for them. Medisafe, they said, would keep track of what I needed to take and when—even drugs I was supposed to stop taking after a little while—with a special notification sound so I didn’t ignore it. I could even add custom stuff, like washing my wounds, which weren’t medication. It made a huge difference for me, and took a big load off of B—.

Honestly? I still use it. After all, I take my estrogen every fifth day, and Medisafe tells me when it’s time to inject, so I never miss a day.

Remember, medication adherence is just as important as surgical recovery adherence, and taking your hormones on time consistently is medication adherence. There’s a whole lot we don’t know about different HRT regimens, but the one thing we do know about all medications is that the more reliably you take your drugs on time, the better off you’ll be.

So, follow your care plan, whether it’s surgical or medical. After all, if what we all want is the best possible results from our transitions, our hormones, our surgeries, being consistent is what’ll make the biggest difference of absolutely anything.