So I clearly spoke too soon with my last post. After CD1 and CD2 being unobtrusive "VL" days, CD3 (yesterday) was "H" for "hemmorrhagic." And that comment I made about not having any cramps? Yes, I do usually get them on my first full cycle day, for a whole day. But apparently this cycle had multiple tricks up its sleeve, and it waited until CD3.
Unfortunately (I think), after a half-hearted effort last cycle, I have now fully jumped on the "no NSAIDs" bandwagon. NSAIDs are non-steroidal anti-inflammatory drugs, a major subclass of pain relievers. They include ibuprofen in all its forms, including Advil (that's ibuprofen, right?), and, tragically, naproxen sodium (Aleve).
Since I was a teenager, I have lived on naproxen sodium during my menstrual cycle. I think one day in tenth grade (when I was - oh, crap - only 15), I realized I had taken 16 extra-strength Tylenol since morning, and the day was far from over. I think Aleve came out around that time, and though I am typically skeptical of advertising, when I heard that it had unprecedented effectiveness for an OTC pain reliever, I made another uncharacteristic move and paid for brand-name medicine. (The generic versions came out soon after.) They're magical tiny tablets possessed of immense power: the power to make my life survivable, and me into a functional member of the adult community and the productive workplace. Rather than the creature that lived several of my teenage years - a convalescent who spends at least one day a month curled into the fetal position moaning from an indiscernible cause, unable to perform any useful functions other than praying for death. Taught well by my abortive adventures with acetaminophen (Tylenol, for you label-droppers), I never overdosed on Aleve ever, lest it should succumb to the creeping ineffectiveness the Tylenol had. What I didn't realize was that the Tylenol had not become less effective as I overdosed. It had never been effective...at all.
You see, for those with very serious cramps or female-reproductive-system-related pain, Tylenol is sort of a joke. I know, I'm not telling you endometriosis sufferers anything you don't know. Apparently, NSAIDs (including my precious Aleve) function as prostaglandin inhibitors, which (and you'll have to forgive my lack of medical knowledge here) means that they act directly on some of the female reproductive hormones that are the culprit in that murderous endometriosis pain. In other words (setting up the first term of my Equation of Hideous Unfairness): all serious endometriosis sufferers are more or less NSAID addicts. Not because the little pills create some sort of euphoric high, or have any attraction outside of the days when we have the horrible cramps - but because we need them to enjoy the kind of basic survival that healthy people (you know, healthy people who can, among other things, have children) take for granted every day.
You can tell that the reliance borders on addiction, because if an endometriosis sufferer starting her period asks whether you have pain relievers on you, she will ask for her preferred type by name (a healthy woman will probably accept whatever variety you have). And if you offer her your preferred type (which you always carry with you - you have them in your desk at work, your bathroom at home, AND your purse, and sometimes you have a fourth bottle elsewhere, just in case), even if you swear that they have kept you alive through years of endometriosis, she will not accept them - she will ask a restaurant full of strangers until she gets the ones she wants. She cannot risk that yours will not work the way hers do, and she will spend an evening in agony. You wouldn't either, of course.
Are you ready for the second term of the Equation of Hideous Unfairness? Well, buckle up. Apparently, there is some research (not, as yet, widespread) that links the use of NSAIDs with luteinized unruptured follicle syndrom (LUFS). My RE actually said (in more or less these words) that she's not super-excited to find out whether I have unruptured follicles, because there is almost nothing they can do to treat LUFS successfully. (Before you attack her for the phrasing, I'd have put it the same way myself, honestly.) I have a friend who sees Dr. H in Nebraska who heard (from him I believe) about the NSAID-LUFS connection, which Dr. L/C has not mentioned to me. She may not be aware of it. (In her defense, though Dr. H is aware of it, the phalanx of treatments he's tried on my friend have not yet worked, any of them; treatment of LUFS is probably one of those things on the next frontier of fertility treatment.)
I didn't want to believe it for a few months (I cannot live without my Aleve), but I finally did some googling and realized that there was a decent amount of documentation. Not everybody who takes NSAIDs will have LUFS (or Aleve would be way popular as a means of birth control!); I imagine that the LUFS incidence is probably higher in people who already have other fertility issues (the second term of the Equation is imminent now). If you are interested in reading more about this or introducing your doctor to the idea, this looks like an early scholarly treatment of the issue and should be enough to get the attention of a doctor. (It studied arthritis patients; I believe naproxen sodium was originally developed as an effective treatment for arthritis.)
(I promise I am not holding out on everyone. I didn't really believe that swearing off Aleve would make a difference - it still might not, other than the pain - and I always figure that everyone else hears of everything before me. But I am now sharing an article to make up for my delay! Also, in another not-holding-out-on step, here is the link to the generic proxeed website TCIE so kindly shared. Scroll to the bottom. I got mine on Amazon, at a further savings off the prices listed on the site, actually.)
So what non-NSAID pain reliever is an option for those of us who have not yet gotten pregnant, and are not 100% sure we are ovulating normally (at least, not 100% of the time)? Well...Tylenol, actually. Acetaminophen is not an NSAID and is not (that I know of) linked with LUFS. Of course, it's also almost completely ineffective. So, here's the entire Equation of Hideous Unfairness:
If you have severe endometriosis, you will need to take NSAIDs, so that your basic life activities are not inhibited by debilitating pain.
If you have severe endometriosis, you are likely to experience problems with fertility.
If you have problems with fertility, it is very possible that taking NSAIDs will prevent you from ovulating properly.
While your doctor tells you that your endometriosis can best be treated by pregnancy and you wait to get pregnant, you are preventing yourself from getting pregnant without knowing it.
If you stop taking the NSAIDs, the LUFS problem (insofar as it is caused by the NSAIDs) should go away...but this is no guarantee you will get pregnant. And while you wait to see whether it helps, you will be in pain.
People without endometriosis are not in this kind of pain. They do not appear to have these NSAID side effects. And they generally don't have trouble getting pregnant.
Congratulations! You are the recipient of...Hideous Unfairness.
That's the equation.
So yesterday, I sat in my office and tried to be productive, resentfully swallowing the occasional (ineffective) extra-strength acetaminophen. I had meant to spend evenings this week getting my home ship-shape and generally catching up on everything to a degree that would make my friends and acquaintances jealous and unhappy, but I felt like garbage when I got home, so I got in bed. That was fine.
Then this morning, I woke up with - actually, was awakened by - Raging Pain. Other than the fact that it seems to radiate from my right ovary (and occasionally involve phantom pains in my left ovary and elsewhere), I really have no idea what it is. After lying there for a few minutes wondering whether I should go to the emergency room and trying to convince myself to get up and take a shower (ridiculous. I could barely move, and would have spent the whole day in my desk chair writhing to find a less-painful position, and giving a dying expression to anyone foolish enough to wander by and ask for legal advice), I called in sick to work. I debated telling my coworker that there is something wrong with my ovary, the thing they found on the ultrasound last month clearly is an endometrioma (but it's like my sixth and I've never had one hurt like this), and I want to die, but I just said I was sick. And then sat there wracked with guilt, because I wasn't audibly sneezing or anything, and of course she would think I'm lying. I take maaaaybe two sick days a year (for my laparotomy in 2009, I took four). I also hoped (bizarrely) that the pain wouldn't go away at 10AM or something embarrassing like that, because then I would have to go in halfway through the day and they would really think I was lying.
I needn't have worried. It is now almost 10PM and I am still in pain. If I stay under the covers and keep my stomach warm, it's a little better, but not good. If I'm actually asleep (I slept all morning, because I felt too awful to do anything else), it doesn't bother me too much. I took a hot bath earlier, which really did help, except that I then decided I needed a shower to get really clean. I almost passed out, and ended up leaping around, freezing cold and wet trying not to throw up from the dizziness, and in the process making the pain worse than it had been at any point previously. I collapsed in bed and couldn't move for an hour; blessedly, I eventually fell asleep again.
Whatever this is, it isn't cramps. To be responsible, I figured I had to rule out anything life-threatening. I have decided the pain isn't sharp enough to be a cyst turning my fallopian tube back on itself and causing a necrotic ovary (I've been a touch paranoid about that ever since I was told about it in 2004, but apparently it is very rare, and I've had a lot of cysts by now that haven't done that). I also got my very patient DH to pick up some Dollar Store pregnancy tests on his way home so I could eliminate the possibility of an ectopic pregnancy (super-unlikely, I know, but the sort of thing for which I should visit the emergency room, so I figured I should make sure). Negative, of course, and after four days of bleeding, I think it would be positive even in the afternoon, if I had a fertilized egg in there somewhere.
I am supposed to make an appointment for a peak-day(ish) ultrasound, so I figure that if it's not life-threatening, it will get diagnosed in a reasonable time and I can figure out what to do about it going forward.
Maybe it will be better tomorrow. (2011 - to be clear, this is not what I had in mind.)