Tuesday, January 11, 2011

reason #743 I hate endometriosis

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.)


  1. You're spot-on (as usual) about nsaids. To this day I rarely if ever take Tylenol b/c I think it's basically water pills. Or may as well be for the effect is has on me. I was OD-ing on Advil regularly each month before my surgery. My surgery DRASTICALLY cut my need for Advil. Now it's 2, maybe three...only for a day or two. Unheard of in my presurgery life.

  2. My bout with serious menstrual pain was brief. I have been on the bathroom floor - skipping the rest of the scene; there is no way to safely describe it - but this only happened three times, and it was a long time ago. Dietary change had an impact, so it obviously wasn't anything serious, although I did have an U/S at the time, and it may have been tied into the retroverted uterus thing. All that to say that I have had a peek into what you are describing, but thankfully no more than that. I do, however, absolutely, see myself in the pain relever search. I am an ibuprofin girl myself, and that definitely gets raised eyebrows here in Germany - I also cop to multiple bottles and agree that tylenol is worse than useless. So lucky that there is a pharmacy in the building at work.
    Hoping for a _much_ better day for you today.

  3. gosh. acupuncture has helped immensely with the (admitedly mild and nowhere near the pain you describe) cramps, to where now I don't even have to take any meds during my period. i dont know if it would help endometriosis cramps, but if you are interested in a non-medicated option, maybe you could give acupuncture a try!

  4. Oh wow - this sucks! I'm so sorry you have to go through all this pain. And you're right - this is truly unfair!!!

  5. That is unfair. I hope you're feeling better today!

  6. I totally agree with the nsaids - but I've never been a fan of ANY meds. Ibuprofen destroyed my stomach, percoset destroyed my liver...and none of these actually worked well at all! I think fixing the underlying issues is the only way to control pain - whether its surgery, progesterone therapy, diet changes, or a combination of things. Inflammation is an endo girl's reality - and inflammation is pain.
    My one advice to you would be to not skip the progesterone cream. Taking the progesterone does more than just support a possible pregnancy in that luteal phase - it has a cyclical effect and builds every month. If you have the proper prog. support in the LP (with nat'l prog, which is stored in fat tissue - the other kinds don't work this way.), your next ovulation will be stronger (because you won't have started the cycle with such an est/prog imbalance), which then makes your OWN progesterone levels stronger and gives you a better LP, which means a healthier length, less painful AF...and repeat process. That's why sometimes taking nat'l prog can take a couple of months for you to see real results. I'm on my third month now after restarting it and my period has been so much easier! Shorter and less cramping. I think the progesterone also helps to shrink endo implants, including the adenomyosis (which causes heavy, painful periods).
    I know a lot of people are tempted to just skip it because there's no chance they could be pregnant that month, but you really have to have a more long-term outlook when taking it.
    Anyway, off my progesterone soapbox.
    This is a good site that explains how to use nat'l prog. to treat endo - the focus is not on getting pregnant, but just treating endo...so if you're willing to take a TTC break for a few months, you might be interested in looking into it: http://www.endo101.com/dose.htm
    I hope you feel better soon!

  7. Well I had no idea about the nsaids but I am so very thankful that you posted about this bc now I know! I will stick to Tylenol now. I absolutely hate hearing that you were in such pain...how did you control yourself. I feel as if I would have either died or had to gone to the ER. I hope that today is a better day. And as far as taking off work goes, don't worry what the others at work are thinking. I had to let go of that really quick b.c it stresses me out more and we don't need more stress. HUGS

  8. Oy, that's terrible! I take Diclofenac and up to 4 Ibuprofens at a time during that time of the month and reading this about NSAIDs possibly contributing to difficulties in getting pregnant does not look good. Boo.

  9. Sooo sorry you are in so much pain. Going without naproxen during your period is like going through a desert without water.... or possibly much worse. I've found heating pads (both on the stomach and lower back) make some difference, not relief mind you, but maybe take the pain form a 10 to a 9.5. I've heard from other endo. sufferers that ginger (not sure about forms mixtures or any of that, as I have not tried it) can help some. Hope the pain goes away soon. Major respect for you going without your nsaids, seriously you are one strong woman!

  10. This level of pain sounds intolerable - and then to have this dilemma about LUFS ... I don't even know what to say.

    My friend found that a gluten-free diet made a big difference to her - she also greatly reduced dairy - there's a book about it I believe. I think she still gets bad periods but less frequently.

    I hope you aren't dealing with LUFS, just another thing to add to the mix. Ugh!

  11. I'm so sorry about the horrible cramps. I was lucky that my endo only caused moderate cramps and I was able to function with only Tylenol (with the whole LUFS/NSAID connection I stopped taking them as soon as we started TTC). I hope the year improves soon.

  12. What a conundrum!!!! I empathize with your horrible pain. I couldn't function with Tylenol only -- really, it was a joke. With the amount of ibuprofen that I was taking pre-surgery I should've bought stock in the company!

    I'm so sorry that you're experiencing so much pain!!!

  13. I cannot imagine having to deal with this! That's interesting about the link. I had no idea. I'm so sorry, Misfit. I hope you're feeling better.

  14. "All serious endometriosis sufferers are more or less NSAID addicts." If that's not true than nothing is! Thank you so much for this post-it puts into words the kind suffering I endured for 12 years. And the kind of suffering I'm scared is going to return when I'm no longer pregnant.

    I'm not crazy. I'm not a wimp. This kind of pain is real. Thank you for reminding me of those things.

    And I'm VERY interested to learn more about the NSAIDS-LUFS connection. Although we were able to conceive-it was endometriosis and immature, un-ruptured follicles that we had to overcome.

    Also, I've had some breathing issues since I was a teenager. Not asthma-no doctor has every been able to really figure out what's going on. They started around the same time I got my period (and thus the same time I became addicted to NSAIDS). But I've heard that NSAIDS can also have respiratory side effects and I believe that may have contributed to my breathing issues.

    We're damned if we do and damned if we don't.