Tuesday, June 13, 2017


This post will discuss female medical issues in explicit detail.  If that's not your thing, please consider this your warning and move on.  I am talking about this because I can't possibly be the only woman experiencing it and it might help others to know they're not either.  Also, I am under the care of several competent medical professionals.  If you feel moved to offer me unsolicited medical advice, and you are not a doctor (preferably my doctor), please rethink that plan.

About a year and a half ago, in the course of the collection of medical catastrophes that was October 2015, I was diagnosed with uterine fibroids.  As they were 'merely annoying' as opposed to the several other issues rated at 'genuinely troubling' and 'potentially life-threatening', I set the matter aside to address when I had the others stable.  Once my iron levels returned to a reasonable norm, and I recovered from surgery and then from food poisoning, and got my foot out of the orthopedic boot, I set about looking for a new gynecologist (I had fired my previous gyno) who accepts my insurance and isn't an hour from home/work.

Meanwhile, my periods were moving from the moderately heavy ones I've had my entire adult life to something else entirely.  Since my 20s, I've had periods that were slightly heavier than most people's, but still didn't seem to cause the kind of anemia my late 30s offered (I could give blood about half the time up until 2010).  It was about 6-8 ounces of fluid loss (including but not exclusively blood), measured using the menstrual cup:  two heavy-heavy days, two moderate days, a day of spotting at the beginning and the end.  I've always had a lot of clotting, ever since my teens, and that hasn't changed.

They gradually got longer over the last year and a half, though only a little heavier.  By last fall, it was two heavy-heavy days, two moderate days, and ten days of intermittent spotting just heavy enough to need some form of protection.  Sometimes there'd be a day or two of nothing, then SURPRISE!  I understand this is common with fibroids, so it makes sense that as they've gotten larger the periods have gotten more annoying.  Additionally, the clotting's gotten much worse, which makes a cup particularly irritating:  Check cup on schedule, cup is empty, wash hands, walk back to desk, feel breakthrough, return to bathroom, cup is full of single clot.  Empty clot, spend rest of day anxiously waiting for another clot while nothing happens.

After consultation with my gyno and another uncomfortable vaginal ultrasound, we acknowledged that the first priority is to get the bleeding under control so that we can consider fibroid removal vs hysterectomy without the crushing pressure of the anemia driving the decision.  I also explained that the recovery from any surgery needed to take into account the festivals at which I camp in April and October.  To that end, she put me on a 14-day rotation of progesterone in February.  She said, "The next period will be as bad as usual, but after that they should start to taper off fairly soon."  I talked to a friend who's got similar issues, and was put on the same rotation; over three months her periods went from 10 days of wanting to die including 2 days of hourly bathroom trips, to four days of "hey, that's not too bad!" I did a lot of research and by and large the treatment I was put on seemed to help a lot of women.  So, I was hopeful.

It's at this point that someone invariably pops up to tell me the wonders of hormonal birth control and express amazement that I haven't been on it all along.  I agree, hormonal birth control is a wonderful thing...if you don't have migraines, especially migraines with visual auras.  I was never willing to take on a daily maintenance medication that increased my level of stroke that much.  It also turns out that it probably wouldn't have worked, if the progesterone was any indicator.

First period:  About normal.  Second period:  early.  I called the gyno and they said that since it was just a couple of days, it could just be my body adjusting to the schedule.  Slightly heavy flow, which was frustrating, but I told myself "Think how wonderful it will be when you taper off!"  Third period:  again a couple days early, arriving the Sunday morning of a camping festival I attended.  OK, annoying, but they should be tapering off now, right?  Also, gyno appt set up for the first time after festival I'm sure I won't be bleeding, because now my summer is open and I've got cleared time for recovery.  Heavy period.  Like, I've only had maybe ten periods in my life this heavy.  Three solid days of heavy bleeding, severe cramps for the first time in years.  I tell myself I'm ready for this 'tapering off' to kick in any time.

My gyno's office uses this electronic scheduler, where you go and pick out an appointment, but the scheduler doesn't allow you to differentiate between the actual doc and her nurse, who handles a lot of stuff very well but cannot have the "I think it's time to make surgery a priority" conversation with me.  The appointment I made for the first reasonable opportunity after festival gets moved because it was a nurse appointment, so I go into my fourth period of the progesterone.  The thing that I should have done was tell them how much worse it was instead of just telling them I was still having kinda heavy periods and some side effects.  They told me it usually kicks in after a month, but sometimes it could take longer, and if the side effects were too much, I could stop.  This is where I should probably have detailed the side effects, and the degree to which I meant 'still heavy' because when I told the doc about it in the appointment, her eyes got big and she said, "No, no, stop taking that, don't take any more of that."  Instead, having heard and read all the women talking about how bleeding less was so worth it, I soldiered on with it, unaware that the worst was still ahead.

So, about those side effects.  It started with headaches, which every site lists as a normal effect.  Fourteen days a month of what felt like low-grade dehydration headaches.  Lemme tell you, I was one hydrated motherfucker, because I kept drinking water to try and make them go away.  It never worked, but the massive water consumption is probably the only thing that saved my skin, when the hormonal widgeting started flinging the oil levels all over the place.  I haven't broken out this much since I was 15.  I also haven't had this much trouble regulating my moods since then either.  I've spent the last four months completely done with people's bullshit.  I've mostly managed to restrain it to 'snippy' but I've also unfriended about ten people because I just wasn't having any more pussyfooting maintenance of their delicate sensibilities and bigoted 'friends of friends'.  Turns out that part's been surprisingly good for my mental health; with 20% less fucks to give, I have heavily prioritized them.

However, the side effect that's affected me most is known as 'breakthrough bleeding'.  Randomly, at any time in my cycle, in amounts that varied from 'a few drops' to 'ruined outfit', I was bleeding.  Because this occurred in conjunction with an ankle injury that sidelined my cardio, I quit working out entirely.  It only took one instance of stopping mid-lift for a panicked rush to the bathroom to find that only the foresight of wearing a pad had kept me from bleeding all over the machine to make me extremely nervous about weights.  I stopped hiking, because a sudden rush of blood three miles from anywhere is a day-ruiner.  I've had to give up a lot of protests/rallies/marches because I couldn't be sure of bathrooms, of somewhere to check my "is that sweat or is it blood?" anxiety.  To say that I've missed these parts of my life is a tremendous understatement.

Uncertainty over whether Today Is A Bleeding Day has colored pretty much every aspect of my life for almost four months.  Yes, I carry pads everywhere, yes I wear them pretty much 100% of the time now, but the other thing about it is that it's demoralizing on a level it's hard for me to explain and the frustration and constant anxiety over whether I'm bleeding again is exhausting.  My body has been my ally, and I have been its, and now part of it is not cooperating with the plan we had by which I surrender a chunk of each month to it and I get my freedom the rest of the time.  I want to be mad at my uterus, but I know that it's not healthy, that it's decided to build itself some little fibroid friends and give away all my iron to them, but it's not really thinking as its best self right now.

Any of this, all of this, would have been on some level worth it, if it stopped the bleeding.  It hasn't.  This last period was something I can only describe as a nightmare.  Two days of showering while standing in my own blood.  A breakthrough while brushing my teeth that I was just too tired to fight so I finished brushing and then mopped up the puddle.  Less than an hour between cup changes (it holds an ounce, for reference).  The bleeding tapers off at night a little, so I can catch an hour, sometimes two, of sleep before the feeling of a breakthrough wakes me up to run to the bathroom.  I slept on a towel, just in case. I've bled on the office floor at work, I've bled on the bathroom floor at work.  Two loads of bloody towels in three days.  Just before I was ready to take myself to the ER and say "Something has gone very wrong," it slowed abruptly (there were no moderate days, just three days of non-stop then just over two WEEKS of very intermittent spotting).

Through all of this, I found the final fuck-you from the progesterone:  cluster migraines that happened to intersect with a round of weather changes to exacerbate them.  I hadn't had a migraine in two years; I got three in one week.  By the second day of excruciating pain, I had made up my mind to tell the doc that if she wouldn't take me off the progesterone I was finding a new doctor because I was absolutely done with that shit and never taking another pill.  Thankfully, her response was much more "No, no, that's not at all what was supposed to happen, clearly this is not the medicine for you."

In a perverse bit of luck, I started this entire progesterone debacle with dangerously high ferritin due to my liver's inability to cope with the last round of iron infusions.  I was lucky enough to escape any liver damage (in part because my ferritin's fallen from 1100 to 450 in the last two months to recover from the bleeding), but also lucky enough to have enough iron to turn into blood, so I am miraculously only my normal level of slightly anemic.  Score one for the Ally Body there, at least.

The only question at the gynecologist's appointment was which surgery and when, no question of whether.  I had essentially made up my own mind that fibroid removal was a losing game.  Last time I was checked, there are three and they are fairly large, so removal *could* have been an option depending on how they were attached, but I'm not even perimenopausal, so there's a strong chance they'd grow right back and I'd just begin a years-long process of regularly carving out chunks of a uterus I have no plans to use.  So, hysterectomy it is, about a month from now.  I managed to get them to move my surgery up from the last week of July, which would have been monumentally inconvenient for so many reasons.  I'll be out of work for at least a week; I plan to be hardcore serious about doing nothing that week but read books and pet cats.

Those who've seen me have been very kind not to remark on the fact that no matter how much I worked out, and especially the more I worked out, my stomach has just gotten...rounder.  The fibroids, per what I hope is the last incredibly and uncomfortable vaginal ultrasound for a very long time, currently approximate a 24-week pregnancy in size, and expand my uterus up to my navel.  When I was really heavy, this was not so noticeable.  But the reality is that the only reason I can still wear half my clothes in the waist (all the pants are long since given up on) is that I lost fat almost as fast as the fibroids grew over the last year and a half.  I don't know what my body looks like without fibroids any more; I've been holding off buying new work clothes for four months because I have no idea what will change.

The size means that I can not do the easier, quicker, vaginal removal.  I'll have a thoroughly badass lower abdomen scar, and a slower recovery.  I only asked about the fibroids on the last scan, and not if I've still got any ovarian cysts, which I've had the previous two scans; the fact that they have been in different places suggests they may just be a function of when in my cycle I was getting the procedure (usually about day 14), or it may mean that she'll be removing a couple of cysts while she's in there.  Aside from that, she won't remove or otherwise interfere with my ovaries unless she has strong reason to suspect ovarian cancer.  I have no interest in abrupt menopause, so I appreciate that.

I've been referring to this as the 'nuclear option' for resolving the anemia, and it really is.  My periods have been a contributing factor, but the absorption problem won't go away, so I'll still need to monitor my iron.  However, I expect this will end the need for infusions, and I might someday be able to give blood again.  My only real regret is that robot surgery is not an option, so I can't use this to threaten the other organs with robots if they get out of line.