Friday, December 18, 2009

in response

(The library/family room post is STILL coming - maybe tonight - but I wanted to respond to questions/comments to my last post.)

First of all, I didn't get all the comments before I went to bed on CD3, and I figured I had to make a decision by then. I decided to take the tamoxifen. I figured (1) if I had so much as one hour of cramping of the type I had had on it pre-surgery, I would just stop taking the pills (I don't care if I'm supposed to take them for five days, it's not like they're making me fertile anyway!). This didn't happen; I've felt fine. I'll take the third pill tonight (CD5). And (2) I only had one bottle of pills, so I could only take them for one cycle - no big commitment. Then I opened the bottle and realized that for whatever reason, the pharmacy gave me ten pills - two cycles. Perhaps this is a sign.

Why did I do this? Well, although emotionally I've given up on having my own kids, and I am 99% truly let go (well, sometimes a slightly lower percentage, depending on the day - but I am really working toward completely moving on), I feel as though I'm somehow morally obliged to fulfill some quota of treatment thoroughness. I don't know whether it's because I'm afraid that later on, I'll wonder whether I could have had kids if I'd only given it a more serious effort, or because I feel that I have some affirmative obligation to try really hard to bear my own children, or because I feel like I'll be a really bad sport if I quit after surgery and not even any clomid or tamoxifen when all the other gals are doing injectibles and multi-drug regimens and ultrasound monitoring (haven't even had that. For aught I know I could have LUFS. Doctor doesn't seem interested. Also haven't had the p3, 5, 7, 9, 11, 13 b/w, so she doesn't really know what my LP looks like. Doesn't seem to care about that either).

Don't get me wrong - I'm not going to put myself through really punishing treatments out of some sort of compulsion. I would probably even refuse to do the ultrasound monitoring because I just won't take the time off from work to do the drive. (Telling my boss that I have to miss half a day of work however many days in a row so someone can view my follicles is plain not acceptable to me. That's on a long list of things I do not think God intended people to have to go through to have a family, and I am a lady and a properly raised one, and I do not discuss my reproductive organs in the workplace or otherwise in mixed company unless that mixed company is a doctor, only - and not then, if I can avoid it.)

So part of me figures that (1) if my cycles aren't even in the extreme range of normal, I can't claim to myself that we're really ttc in this post-surgery year, which I said I was going to do, as the least reasonable effort I could put in. And if the tamoxifen can right the cycles without making me sick, well, then I should give it a shot. (2) My husband will be home for an unusually long time in the next few weeks, and I'll be off work for a while, during what would be my fertile phase, if I were back to normal. Giving the tamoxifen even a small chance to help things along seems only sporting.

I know this seems inconsistent with my will-never-be-pregnant decision. I don't feel that it is, though. I don't expect or hope that we'll conceive. I just don't know anything - anything - about my real fertility (well, I know it's really poor), so my no-babies decision is more a psychological one than a medical one drawn from available facts. There are almost no available facts. Some facts I could gather require efforts I will not take. I'm sort of doing a Shroedinger's cat deal here. I am confident that that damn cat is dead, but since I oppose cruelty to animals, I believe the right thing to do is toss some kibble in every now and again. I feel as though I can dole out monthly allotments of kibble without holding some over-romantic hope that kitty will emerge meowing on some sunny day. When the day comes to open the box, I will throw out the kibble and bury the cat. I'm pretty prepared for that.

Finally, I want to address the actual questions. With regard to Dr. L/C prescribing tamoxifen - yes, it's a breast cancer drug, and yes, infertility is an off-label use. But there are lots of legit off-label uses for drugs - part of the march of progress, you know. That part doesn't bother me. I also know she's not the only one who uses it. I believe a friend of mine with Hilgers was prescribed it after she did her surgery (he would not prescribe it before as he thought it was pointless).

Which brings me to another question that was posed. My understanding is that after surgery has taken out the adhesions, the risk of tamoxifen exacerbating endo is much reduced. Doctors may say there's no risk, but as AYWH's experience makes clear, that's nonsense. But if the ueber-conservative Hilgers prescribes it post-surgery, it must at least be safER then.

Yes, Dr. L/C prescribes it, apparently, to everybody. I believe she views it as a milder (and fewer side effects) version of clomid. So that's a conservative approach. It does mean that it's the Catholic version of the over-prescription of clomid, but I think she doesn't prescribe it if people's bloodwork indicates it will have no application. It really does balance estrogen and progesterone - it did for me before surgery, and, like clomid, it appears to have for other people. I do think a more tailored approach would be worthwhile, though, and this scattershot treatment for people whose fertility is so weak is not comforting. At all.

I think this question of whether it makes endo so much worse for everyone is really important, though. I will pay close attention and report faithfully if I feel any pelvic (as opposed to digestive) pain on this and I will share.

Another question I was asked was how the endo could cause hydrosalpinx. My (limited) understanding is that the adhesions can form on the ends of the tubes, causing blockage, backup of the fluid, and swelling. I may misunderstand all this, though. I think I was told that my right tube was ruined by the scarring (it has hydrosalpinx, apparently has for years). Dr. L/C was of the opinion that the surgery could have fixed the left one (I interpret that to mean that she tried to remove the scarring and adhesions in that area). But the tubes are very small, and I thought that surgery to repair hydrosalpinx is never a guarantee. So I don't know - and she didn't profess to know - whether that would be successful.

I hope I didn't forget to address anything. I'm upset with the tamoxifen and with my doctor. I feel like I screwed up by not getting my hormone levels checked before I took more drugs post-surgery (the hope was that the surgery would balance things on its own). On the other hand, my recent cycles seem to indicate all by themselves that my hormones were off. I hope I did the right thing. I sure don't intend to stay on this stuff for life just to menstruate normally. (I am sticking with my resolution: if health is not an option, I want to STOP MENSTRUATING.) But we'll see.


  1. That all makes sense. I still am not a fan of the tamox, though. Dr Stegman told me straight out he hates it, and Letrozole (Femara) seems to be the drug o' choice for NaPro these days (not Clomid).
    I didn't realize you had adhesions around your tubes, too - ouch :( If you do have hydrosalpinx still in 1 or both tubes, 1 single u/s will be able to determine that. Is there an imaging center closer to you than your Dr's office?

    I understand your reasoning for wanting to give it your best shot right now. You'll probably never be "newly post-op" again in this journey, and now's the time, right?

    I'm holding out for a miracle for you :) You definately deserve one.

  2. I think I know where you're coming from. When you have hormonal imbalance, taking medication to balance it is almost like "not preventing" instead of "trying."

    I wish I'd had any inkling about Clomid and its partners in crime exacerbating endo when I was taking it for several months (a few years ago). Maybe one of my surgeries could have been averted.

  3. Good luck with your treatments. I hope that you can at least feel like you gave it your best shot and got your body as healthy as possible.