So (as you already know if you read my Mad Editor posting on the subject): I had the surgery. I have a diagnosis. I have endometriosis. Officially. For reals.
It is a relief to know for sure. I just think I’ll be a bit more celebratory when my internal organs are back where they ought to be and I can actually wear blue jeans again.
I live in blue jeans. Ordinarily, if you see me wearing anything else, it’s because I’m in the tub, at a funeral, or have somehow scored tickets to the Bolshoi. I’ve never been to a professional ballet performance, I move in fairly healthy circles, and you shouldn’t be peeking when it’s bath time. So if you’ve seen me, you’ve seen me in jeans. Unless you’ve seen me in the past four weeks, in which case you’ve seen sad, blue-jeanless me.
Sad partly because of the fact that I still can’t wear anything the least bit binding. (These sweatpants are hitting my limit of pain tolerance as it is.) But mostly because I thought I’d know what to do by now, and I don’t.
I really thought that knowing what’s wrong with me would be enough. I also thought that this surgery, which left some of my innards looking like a blasting zone (yes, I have pictures — be nice or I’ll show them to you) would bring some relief.
Possibly it may. Possibly it’s too soon to tell. But I’ve had a perfectly ordinary cycle since the surgery, and ordinary for me includes some truly breathtaking pain.
Mostly not during. I can’t emphasize that enough. I don’t have the usual endo symptoms. I don’t have those horror-movie heavy cycles with a side of agony. Instead, I get random excruciating pelvic pain throughout the month — usually starting up a few days after my cycle ends. And by “pelvic,” I mean “I hate having to mention my backdoor by its medically accurate name, and so am actually kind of grateful that my entire pelvis has started being invited to the pain party so I can just talk about that and skip discussing the outlying bootie regions.”
So here’s the deal. My doctor wanted me to go on Lupron — a non-reversible injection that catapults you (well, not you, especially if you’re a guy) into instant menopause for the duration, which is usually six months. My language on hearing this as an option was not the kind of language most people appreciate seeing on a site that features the word homeschooling. I’m 43. I don’t want to volunteer for early bone density loss, hot flashes, and — what was that other thing? Oh, right — memory issues.
All the endo sufferers I know who are happy that they went on Lupron had significantly worse and different symptoms than I do. And plenty of endo sufferers describe Lupron as a nightmare. I thought about my current symptoms, considered the side effects I was being offered, and declined.
Fine. I should go on the pill, then. Again, according to my doctor.
And this is where it gets tricky for me.
I’m trying really hard to figure out if this is a good option for me, and I feel like I just can’t get enough solid information to make an intelligent decision.
Specifically, I get migraines. I’ve had at least one migraine that was preceded by a fascinatingly beautiful pair of clear kaleidoscope glasses. The world was full of sharp-edged crystals, and I was oddly serene as I peered through them. I could see well enough to get around all right inside, though I didn’t risk tackling the stairs. Which was good, since not much later the pain smashed all the pretty shiny glass.
“Migraine with aura,” my friend who knows stuff said. “Do NOT go on the pill.”
I contacted my doctor. Nicely. My email said: “I get migraines. This seems to be a concern when it comes to taking this pill. How should we handle this?”
“Women who have migraines with true aura cannot use estrogen containing forms of birth control. Aura means that you have neurologic symptoms when you have your migraines – like your arm goes numb or you lose half your vision. It does not mean that you have some spots in front of your eyes when you have your headaches. Women who truly have aura have an increased risk of stroke from estrogen. Unless a neurologist has diagnosed you with ‘migraines with aura,’ you should go ahead and take this pill.”
Here’s what bugs me: We’ve NEVER talked about my migraines. I was prescribed the medication for them by another doctor. I didn’t even SAY I had aura, let alone what form it took.
She didn’t ask about migraines when she first urged me to go on the pill. Neither did the two previous doctors.
Of course, this is from the same healthcare group whose idea of really top-notch professionalism is taking my blood pressure, peering at the numbers, peering at my chart, and then asking me, “Is your blood pressure always this low?” Aren’t they supposed to know that? Isn’t that the kind of thing they’re typing into my chart so they can have that sort of information as part of my permanent record? Or are they just emailing their boyfriends at work, knowing I’ll never be able to see the difference from where I’m sitting.
Anyway. The whole tone of the letter from my doctor sounded to me like: quit trying to qualify as a member of the special-people club and take your damned pills, already.
Look, I’ll be honest: I know that I have a higher-than-average risk of getting a stroke just by waking up every morning as a migraine sufferer. Specifically, I have double the risk of having a stroke that an otherwise healthy non-migraine sufferer has. But we’re talking about doubling a very low number. So, fine. I live as healthy a life as I can. My blood pressure really is that low (not low enough to be worrisome, as I immediately checked on arriving home that day). So’s my cholesterol level. I exercise every day, even when my stitches hurt. I have oats every morning and chow through broccoli the rest of the day the way some people toss down gummy bears. I’m a good girl, I am, and I does what I can. The rest is out of my control and I try not to fret about it.
Just plain being on the pill also doubles one’s risk of stroke. Again, double a low number? Still a low number. I don’t love it, but the potential health benefits might be big — not merely a matter of helping my symptoms, which aren’t bad for an endo sufferer but are atrocious for someone trying to live a so-called normal life, but possibly hitting the problem at the source. Specifically, stopping the endo implants from growing back. So that’s good.
The problem is that if I really do have migraine with aura, going on the pill doesn’t double my chances of getting a stroke — it multiplies them by more like 8. And that I’m not so sure I’m willing to do.
But I also don’t want to feel like this all the time.
But I also don’t love the side effects I might get from the pill. Nausea, already my near-constant companion, loves to party with the pill. Mood swings often come along for the ride. And, oh goody! — bloating and/or weight gain. When I still can’t get into my normal clothing yet.
Even aside from all this is the fact that I’m never completely sure my doctor is talking to or about me when she’s talking about the potential benefits of going on the pill. She keeps mentioning how it really helps with heavy bleeding and menstrual cramps. Which I don’t get. Most endo sufferers do. Is she prescribing this medicine to most endo sufferers, or this particular one?
My choices are:
Shut up and go on the pill, already. Which sounds more negative than I feel. In many ways, it would be a relief — to be doing something definite, anyway.
Go on the pill, but explore the possibility of eventually working with another surgeon. Specifically, one of only 7 surgeons in North America who treat endo by removing every last bit of it, rather than shaving a bit off the top and throwing pills at it the way everyone else does. The closest person who does this is about 350 miles away. We might be able to change our insurance and get reimbursed for most of the money — not counting travel expenses, I assume — but that means paying upfront and hoping for the best. We’re just now starting to see light after years of paying off medical bills. I’m not thrilled at the thought of starting that all over again. I like being able to buy groceries without routinely having a panic attack.
Go on the pill, but explore the idea of helping my symptoms naturally through what’s called the endo diet. I’m really annoyed that I can’t get more solid information about the science behind this one. Does avoiding certain foods really cut down on estrogen levels, and in turn does that help endo? Plenty of people swear by this diet; but the plural of anecdote doesn’t equal data, and it’s not as if the people who aren’t helped by this food plan are going to be feeling chatty on the subject.
Say “The hell with all this” and overdose on chocolate. Which takes a long time to kill you, I’ve heard, but is worth every sweet minute.
Just tell me: Am I making too big a deal about this? Am I fretting about nothing?
P.S. The endo diet says chocolate is an absolute no-no.