Why Are You Taking That?

There. Fixed that.

It’s pretty well known around these parts that I have endometriosis. Similarly, that the actual line-up of endometrial lesions in my body is a relatively atypical one. That is, a lot of endo tends to be centered on the outside of the uterus, ovaries, and fallopian tubes; I have precious little of it there, but I do have lots of microscopic lesions throughout my pelvic cavity tissues (muscle, connective tissue, and nerves).

Even given that, I’m on a very typical regimen for symptom control: oral contraceptive pills, a daily or near-daily dose of over-the-counter NSAIDs (in my case, naproxen sodium), and the occasional milder opiate-acetaminophen prescription pain reliever. It gets a lot of people, from all over the endometriosis knowledge spectrum, asking me, “Why are you taking that?”

There are laypeople who wonder why I’m on birth control when I’m already sterile. There are GPs and OB-GYNs with limited endo dealings who wonder why I’m not using Depo Provera, Implanon, or Mirena instead. (Hint: Because while they often do stop bleeding eventually, my hemoglobin levels cannot — as in my experience with Depo — sustain the 12 weeks of heavy, daily bleeding I got as “adjustment.” For Mirena, I fully believe that IUDs are often great things when they don’t fall out of my crotch.) Additionally, there have been at least a few endo specialists who don’t understand why Lupron Depot plus add-back therapy or radical hysterectomy plus add-back therapy don’t sound like completely marvelous ideas — since I’m not planning on kids anyway, you know.

There have been people who worry about my increased risk for heart attack and stomach bleeding while taking NSAIDs, just as there have been people who’ve wondered — if my pain is really this bad — why I’m not taking a prescription strength dose. (For the record, I am on days that I need to, but purchasing the OTC version: a) is cheaper; b) lets me take less on days when I need less.) Similarly, there have been people who worry about my impending opiate addiction while others have commented that I should — again, if my pain is actually that bad — be taking a stronger opiate or opioid instead.

Keep taking your birth control and NSAIDs and pretend like they work.

I’m not going to say that all of my advice givers (solicited or not) are not knowledgeable about endometriosis — because that is certainly not true — but none of them are experts in what it is like to be me.

The latest round of, “Why are you on that?” started when I switched birth control pills a few months ago. I switched initially for financial reasons. Now, aside from mild breast intermittent breast tenderness (that does not correlate with where I am on any given pill pack), I have no noticeable side effects to speak of; this in itself is a first. Add to this the fact that it manages my bleeding levels — and consequently, my pelvic pain — better than any other hormonal option I’ve tried, and as far as I’m concerned, we have ourselves a winner right here.

I had mentioned this to a couple of people in person and online in the context of, “This is what I have been using and how it has worked for me; your mileage may vary,” which is my standard disclaimer when discussing any and all brands of hormonal contraception.

The response?

But that pill is dangerous! It’s the one with all the lawsuits!

Which, as far as the lawsuits go, that much is true. There are lawsuits for this pill I’m on now. There were lawsuits for the last one. There were lawsuits for about four or so oral contraceptives and/or pain medications I’ve used before that. While some medication lawsuits are well founded, we are, on the whole, a litigious society — and just because someone sues doesn’t mean there is merit in the suit.

But this one raises your risk of blood clots and stroke! It’s bad!

Again, yes and no. Yes, some studies indicated that this particular pill raises my risk of blood clots above the level associated with the levonorgestrel-containing combined pills. Let’s assume these results are correct; I certainly did when weighing my choice to try this pill. That said, there are other brands — other progestins and other delivery methods — that raise similar concerns; my new pill is actually not unique in this respect. In all cases, the relative risk when using these methods remains lower than the risk of blood clots during pregnancy and immediately postpartum.

There’s also the fact that these risks — even though blood clots are a serious issue — don’t exist in a vacuum. For instance, if I’m considering them happening to me, I have to consider that I have virtually no significant factors that place me at increased risk. I also need to weigh the potential of a blood clot against the reality of plummeting iron and increasing pain (and therefore increasing need for those above mentioned pain medications, each with physical and psychological risks of their own). Even when the tradeoffs don’t necessarily merit an ER-worth risk, quality of life still has value — and I’m the one entitled to assign that value to my quality of life.

The truth is, my current regimen (medication plus other lifestyle choices) is not spectacular at managing my symptoms. If I suddenly found myself with a fairy godmother and a magic wand, we would definitely be having a conversation about a workable endo cure. But that doesn’t exist for me right now within widely available medical (and lifestyle) options. And the options I’m using right now are the ones that provide the best balance of pain/bleeding control against unmanageable side effects (e.g., the vivid and sometimes frightening hallucinations I get while on synthetic opioid medications). In other words, I’m taking “that” pill or “those” meds because they are the ones that best help me to live my life — with my priorities, as I decide.

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6 comments on “Why Are You Taking That?
  1. lifeandendo says:

    What is the name of the pill that works for you? Do you take it continuously? Just curious, both doctors I have been to recently told me that I am wrong…but I am 100% convinced that my last pill caused my flair ups. I have been off of it since August. Back then my pain was daily, now it correlates with my cycle. My new doctor wants me to get a nerve block. I agree about walking away from Depo and Lupron. Thanks for sharing :-)

    • Tori says:

      I’m currently on Yasmin, though I know that reactions to different brands of pills vary dramatically according to individual body chemistry. I don’t take it continuously as even on this pill, I can’t go more than 3.5-4 weeks of active pills before I get breakthrough bleeding (which for me comes with massive pain and doesn’t let up until I take a pill-free break).

  2. I hate medical advice from people who have no idea what they are talking about beyond a sound bite that once sort of heard. I have made choices for some pretty heavy duty medicine due to my endometrial hyperplasia that looked crazy for some but worked for me until nature and old age took their course. Yeah, menopause!

    • Tori says:

      It would be too soon for me to start a menopause countdown, wouldn’t it? How many days are in 20 years? :P Well, and as much as I will welcome it when it comes naturally, I do not at this point want to induce artificial menopause on myself.

      Also, I’m going to request that while you’re commenting on my blog, you not use the word “crazy” to mean “unreasonable” or “ridiculous.” It can be hurtful or alienating for some people with mental illness. (And while I realize this doesn’t speak for everyone with mental health issues, my preference here is to err on the side of not co-opting such language.)

  3. Shauna says:

    While I don’t have endo, I do get into similar discussions over the meds that keep my chronic pain levels under control (although I’m now at a point where I’m worried about pain I’m *not* feeling that I may need to feel in order to not do more damage…). FWIW, I hear you and empathize with you.

  4. G says:

    This reminds me a lot of my experience with medication to manage mental illness: finding the right meds tends to be a lot of spaghetti-throwing, hoping something sticks. It’s such an individual process. And if I found meds that adequately controlled my symptoms but had nasty side effects– well, is being able to function worth the risk of seizure/liver damage/ataxia/blood sugar dysregulation/etc? Yes, it may be. Trying yet another combo hoping for fewer side effects might be dangerous, unpleasant or flat-out futile. And the decision is between me and my pdoc.

    However… you’re a particularly informed and engaged health care consumer. Does everyone have the same level of engagement with their doctor? Probably not. (Not that they need a lecture on that.)

    It’s important for folks to be able to talk about health issues, but our health-obsessed society seems to act like a person’s health is everyone’s business…

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