Friday, May 15, 2009

what's wrong with me

This will be, of course, an abbreviated list.

My Cervix is a Freak

First, the colpo biopsy results: biopsy says we're back to CIN1-CIN2 (pap showed CIN2-CIN3). CIN1 is mild dysplasia (= abnormal cells); CIN2 is moderate.* While mild might well heal on its own given time, moderate is not expected to do so. My RE thus recommends having the abnormal cells frozen off. The options are cryo; LEEP (removing the cells with electrified objects); conization (removing a cone-shaped portion of the cervix with sharp implements); and removal of the cervix. That's in order of invasiveness. The last is obviously too invasive unless you have cancer. Conization has virtually zero recurrence rate for carcinoma and so on (which I don't have) - but, it can permanently knock out your CM, and, I just learned today, can create an incompetent cervix and thus late-term miscarriage.

My regular doc wanted LEEP, but my RE says it might also create a heightened risk of miscarriage, so she recommends cryo - no fertility implications. It's supposed to be done in the week before your period, which would be next week, and she said they could schedule me right away. I asked whether I could just wait a few months. I've had a lot of procedures. My ovulation has been delayed and my CM messed up as it is. I want to feel normal (for me) again before the next round of sharp things. Is that crazy? I don't know, I thought it sounded pretty sane. She says there's no real risk in waiting. Except, she noted, if I got pregnant, it would be trickier to do the procedure. I told her that I would be willing to wait nine more months, and I wasn't getting pregnant, anyway. (Seriously, woman, to whom do you think you're talking?)

I'm Infertile

Starting next cycle, I've been prescribed tamoxifen for three to six months. (I have a feeling I'll be calling to do something else after just three, but who knows. I can be patient, if I forget I'm waiting for something. What I'm waiting for in this case, in case you've forgotten, is a hysterectomy.) Y'all probably know far more about it than I, but apparently, like clomid, it spikes your FSH, and from there on out controls your estrogen and progesterone as well. Which is good, because, as I've mentioned, I'm convinced I have low progesterone. I was tested last cycle, but for whatever stupid reason, the lab hasn't sent those results to my RE. I was kind of taken aback that she didn't seem bothered by this. Also, the hospital hasn't yet sent the 2004 endo surgery records I requested WEEKS ago. Which reminds me, I need to call and yell. (Note: done. Sadly, I had to leave a message, but it was firm.)

Oddly, though, without progesterone test results (that she ordered!), and with only one recent FSH result, she felt perfectly comfortable prescribing tamoxifen. I suggested more progesterone tests (I assumed I would get the every-other-day routine next), and another FSH test just to check (I'd actually like to hear what the next number is), but she was happy with the tamoxifen anyway, and once she explained it, it made sense. I'll have a p+7 draw to see how it's working with things. She did note that FSH=9 is still high for a 27yo (I suspected that), but said that the tamoxifen could still work. She prescribes that instead of clomid because it doesn't interfere with CM and she thinks it doesn't have the same increased risk of twins (which is a real bummer, because I want multiples, already. I feel like I deserve a two-fer. Or therapy). Of course, since it ramps up estrogen along with everything else, it could exacerbate the endo, but since I've been off suppression for 4.5 years and am still surviving, I am not worried about 3-6 months of tamoxifen.

I Have Edometriosis

I know, it's just shocking information all over the place today. One thing that was a shocker: apparently my ultrasound techs (and my doctors) have been lying to me. I have cyst measurements from 2008 and just this week that were max 2ish cm (on the left) and 3ish cm (on the right). Except apparently even my 2008 results - at a different practice! - were actually 5-6cm. Which is the size at which THAT practice told me they'd have to be removed, because there is risk of ovarian torque, cutting off blood supply through the fallopian tubes, and necrotic ovaries. (Which seems like it might be another jackpot of infertility. Also, a great name for an all-girl punk rock band. Actually, can anybody around here sing?)

The good news is, those cysts haven't really grown in a year or a few. The ultrasound this past Monday (as part of the SHG) showed several cysts on each side, but she thought that might just be as a result of ovulation (since it was at CD8), with three or so total endometrial cysts and one suspected to be dermoid (GROSS. I mean, I have lots of things wrong with me, but there are just a few I was hoping to avoid as adding insult to injury, you know?).

Anyway, my longer-term prognosis is, if I don't get pregnant on the tamoxifen (which I'm not planning to), then they'll want to do surgery. This is the one where I get all my ducks in a row and save bullets, because they'll get to remove (1) several endometriomas; (2) hopefully ALL the adhesions; (3) maybe a dermoid cyst; (4) a uterine polyp; and (5) maybe even some abnormal cervical cells at the same time. I figured I'd set a lifetime record with my triple-header surgery in '04, but this could blow that out of the water. Once that's done, obviously they'll hope impediments to conception have been removed, and probably I'll go back on tamoxifen or whatever. And then, supposedly, get pregnant or something. (Hah!)

Law School Makes You Antisocial

Also, I cross-examined. I did - politely, but very firmly. Since there was SO MUCH to ask her (I'm including half of it here, maybe), I did, of course, forget something (namely: the other doctor said the biopsy would show whether the cervical cells were HPV-type, and since both DH and I tested negative before we were married, if they are, I want both of us to go back for a full round of STD tests. The only thing I've ever immaculately conceived is, apparently, an STD...sigh). However, I remembered to ask about a great many things, some of which I have related above. I also asked her what she thought was probably the cause of me not getting pregnant for almost four years. She said the endo. Seems like a safe bet. But, I pointed out, tamoxifen does not treat endo. Well, she responds, but endo causes low progesterone (they don't know how), which the tamoxifen will treat. So, basically, that is what it addresses. I buy that.

Et Cetera

In response to your question, Kischa, I do think I ovulated that cycle. My temps are never a textbook pattern, but they all show that just after peak day the average temp shifts to about .3-.5 higher than before peak day. (Ignoring the ones where I took my temperature too late in the day and one goofy day early in the cycle, I can even draw a cover line on that chart using the standard rule.) It may be that the increase in temperature should be greater, but in my elaborate theory, all this can be explained by low progesterone.

I feel good about what my doctor has recommended. Going in, I was worried that she would order batteries more tests and I would have to wait and wait. It turns out, I'm actually slightly miffed that she's writing scrips on as little as she knows! She's not even seen much of my charts (well, she saw them last time). But I'm being silly - it makes perfect sense that she would prescribe tamoxifen even if my next FSH came back different and regardless of what repeated progesterone blood draws say. (They already know I have endo.) I do wish she had volunteered more information without me having to grill her, but I'm glad that happened to me rather than someone who has a hard time interrupting her doctor. Next time, I will bring my questions written out so I don't forget anything.

I also feel really good about doing something. I'm convinced that I have screwy hormone levels, so not doing anything won't get me any closer to my goal (see above). My two-year reprieve from all treatment to let God get me pregnant on His time may have been spiritually healthy, keeping all the nasty medical intervention out of my vocation, but it was medically nonsense. I need to do something to move myself forward, because I am not getting any healthier sitting around. Also, I need to do something to put the ball back in God's court. With a lot of my major life decisions on which I was unclear, I've left things up to God and waited for Him to sort them out. I know - rage, sarcasm, cynicism, fatalism, flagging in my faith, all these nasty things I say. You don't believe it. But it's true. I've made some HUGE leaps of faith, things that should have gotten me locked up for the sheer audacity of their imprudence. But I knew in my heart I could see where God was leading, and because I followed, I was vindicated.

(This image always leaps to my mind as a metaphor in such situations. Funny how pop culture is almost like real culture in that way.)

I did the same with the infertility, and if I had that decision to make another hundred times, I would do it the same way again every time. I was angry with the doctors, angry with my body, and angry with God, but also, at bottom, I knew that if I had faith and waited for things to straighten themselves out and stopped worrying - and stopped trying always to be in control - then I would get pregnant. It didn't happen. But it was still the right approach. Two (or so) years of trying that method and getting gradually worse with the endo have made clear that I'm on the wrong path.

So now, I feel, as I wouldn't have felt before, that I have a blank check to march into the fray like the Visigoths over the city walls and take things the heck over. I am free to seek treatment in a way that seems rational, no longer at all emotionally attached to the idea that I'm actually healthy and the unpleasant diagnoses I've heard so far are all the ones I'll ever have, and don't feel at all guilty or oh-ye-of-little-faith about lining up available procedures according to convenience or whim, very much as I see fit. I would have been happy to take a random, un-timed pregnancy, sacrifice all my other pursuits, and raise the baby with gratitude. Didn't happen. Now, I am going to exploit the resources of human ingenuity to find out what's wrong with me and what treatment options are available. There are plenty of avenues I won't pursue, but among those that are acceptable, I feel that the choice is mine. Once I start fixing the naturally occurring problems with my body that God saw fit to just leave there, and get the whole system back in shape to work the way nature intended, He can decide what He wants to do in response. Well played, God, and it will be a few months before you're at bat again - but the next move is yours.

*I originally wanted a picture of a cervix with goth makeup or tattoos or something, but saw this and went with it - it's scary, but also kind of informative.

9 comments:

  1. Well you can rest assure I won't be stealing the cervis picture! ;) hahahaha!

    Okay here is the devils advocate. Umm if you have all of that stuff going on in your lady parts, screw tamoxifen and get to surgery. Why even waste the time? I know that it is great to have a plan just saying. Gosh, I hope you prove me wrong! ;) I hope you are prego right out of the hatch with tamoxifen! ;)

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  2. Whew! That is a lot. I do beleive that God can work through physicians. The cryo can be done and work on the abnormal cells which maybe caused by HPV or even chlmydia. The dr. I see (NaPro) does surgery early on in the work up to straighten things out because endo, etc can really create an impossibility of conception in some. Just a thought. Email me if you want to chat more.

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  3. This has definitely crossed my mind. I thought it over, and I figured, I've already had one surgery to remove endo. That didn't get me pregnant, so I don't have an idea that another is the sine qua non of conceiving a child (it may be if they're more thorough, perhaps). I have been mentally adjusting to the idea that someone is going to want to cut me open again, but I think it's responsible of my doctor to try a non-surgical method first. Under the current plan, I can pester her in as little as three months and ask to have surgery scheduled, and to get prepared mentally for being sliced open and laid up for a week or two, I don't think three months is too long. To say nothing of preparing my office for the idea that I'll be out for a week or so.

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  4. Wow, I was so overwhelmed reading this, I can't imagine how you must feel.

    Btw: I stand corrected on the ovulation issue, which is a great thing! ;)

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  5. I can only echo one-hit wonder - wow and overwhelming. as you know, we have boy-part problems, so you all are usually talking way over my head when it comes to the meds.

    just wanted to tell you that there is one more person out there thinking of you!

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  6. I have been reading your blog for a few weeks but am still confused as to what the hell is going on with you! Sounds like you have had lots of crap going on with your lady business. I can relate to the infertility part of this, and the low progesterone part, but everything else is way over my head!! Maybe you could give a brief recap! I'm guessing you are working with your GYN now? And you have seen an RE? I'm just wondering what the GYN says vs. what the RE says. I charted forever and my GYN seemed impressed with all of my printed charts and graphs. When I took them to my RE she basically said something to the effect of this is great but worthless. Gee, thanks! =) ANYWAY!!! I really am curious to what's going on with you!! Dang!!

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  8. I saw a plaque once while my mom was doing chemo & the whole world was falling apart... I wish I had bought it:

    Let's just take it one gigantic, earth-shattering crisis at a time.

    The sarcasm made me laugh (as sarcasm almost always does), and reading your post, I thought of the plaque-I-should-have-bought yet again.

    I admire your degree of knowledge about your body's inner workings & your tenacity with the doctor... and as for "exploiting the resources of human ingenuity," HEAR, HEAR! I firmly believe that God & medical science can work hand-in-hand.

    I'm keeping my fingers crossed for the tamoxifen & you!

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  9. Wow, this is a lot, all at once. I understand your reluctance to do surgery, cryo and tamoxifen treatment all at once. That's just too much. Sounds like Tamoxifen will have similar annoying side effects as Clomid, and having to deal with that and post-op recovery would suck.

    I assumed I had low progesterone--but then it turned out to be absolutely normal during two different cycles. So it might be helpful to see those results, just in case.

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