I started using fertilityfriend.com recently, as part of my agreement with my husband that we'll both take responsibility for the ttc - so he has a source of information he can access whenever, wherever, that tells him where I am in my cycle and what it means. As a result of that, I've been paying a little more attention to my symptoms (I was just writing them down and not thinking about it before), and as you know, with IF, thinking is bad.
I realized that for the last approximately two cycles, the ovarian pinching I've felt every now and again since surgery is much worse. It's genuinely painful, it's increasingly frequent, and it is in no way tied to ovulation. That means I have cysts. I'd be happy to open a pool, but I'd guess at least 2.5cm on the right side, and probably one on the left side as well, but much smaller.
Let's do a brief recap on the timeline: surgery October 12, 2009. Told that the year after surgery would be my "best chance" of getting pregnant. End of 2009: 17-day cycle, followed by a 12-day cycle. Went on tamoxifen in December and January - in December it seemed to help, but my cycle length and fertile phase timing were all screwed up in January, despite two months of the drug - plus horrible side effects. I quit the tamoxifen. I then had my annual exam, and Dr. L/C said that I should schedule a consultation to talk about fertility meds. I canvassed the blogosphere for suggestions, since I didn't want any more tamoxifen, or clomid either. Had my appointment, and she said femara was not an option since I don't have PCOS. Y'all didn't agree, so June 15, 2010, I sent her an article about femara use for non-PCOS patients and requested she consider it for me. She has not responded to date.
The executive summary of the recap: surgery October, to restore fertility. First normal cycle May, seven months later. Cysts back aggressively by June. What restored fertility?
There's a decent argument to be made that the disease is now so far advanced (again) that I can't safely take any medication, even if the side effects are really mild, because it will send the endometriosis into overdrive - and, in any case, the vengeful cysts and adhesions will prevent a pregnancy no matter what I take. Which means - I need surgery this October, too? What the hell is this?
I don't blame Tepeyac for making me worse, exactly. I can certainly point out that I lost most of my CM (it has still never been the same, although it's getting close-ish lately) after my HSG; got hydrosalpinx in my one open tube apparently as a result of the tamoxifen; and knocked out my cycle for seven months as a result of the surgery. Whatever other problems I may have, it's hard to debate that lack of CM, blocked tubes, and no regular cycles will seriously interfere with conception. What I'm angry about, though, is that their patient communication methods make clear that they just do not give a damn. You'll pardon my language, I hope, but I can't think of another accurate way to say it. If I could communicate with them reliably, these would be things I had been discussing with my doctor regularly, perhaps even addressing. As it is, even though most of them are written in my patient chart, she's clueless. She never reads it.
I guess I'm coming to the uncomfortable realization that I don't have a lot of other treatment options. It's not just a matter of choosing not to drive to Pennsylvania or Nebraska to see a doctor (though I'm not willing to). But what would those doctors do about a patient who doesn't start menstruating normally for seven months - and grows cysts back within eight? I mean, of course, I could always ask them, but I feel I've played phone tag with enough doctors for a lifetime already. Besides, if the answer involved tamoxifen or clomid (which I bet it would), that would be a dud, anyway. I don't need to turn into the roommate in Single White Female just to earn my I-did-my-IF-treatment-hardcore badge.
Which brings me, at exhausting long last, to the bottom line, which is: I don't know what to do. I don't know what options I haven't tried that could have worked. I don't know what realistic options I have for the future, and which would be responsible to try. I don't know whether I'm worse off for purposes of any future treatment attempts than I would have been had I had no treatment the last 18 months - but I suspect that that is the case. If it is, what can I do about that? Giving up is always an option, and it's always been one I've planned to take up at some point, but I've always assumed I'd have an opportunity to make that an informed and responsible choice. I didn't think I'd go through all this and know less than when I started.
I'm so monumentally exhausted by all of this, and all I can think of is that the next step is that they take out everything except my vagina, and that's just so damn grotesque, and I just don't know what else I can do.
And please, if you feel some temptation to type the words "Dr. Hilgers," offer it the hell up and go comment elsewhere. If you've never ever read this blog before, I'll acquaint you with something I've pointed out often: I'm not Muslim, it's not Mecca, and I'm not driving to Omaha for infertility treatment. While I understand and respect the fact that, unlike my current clinic, they make some effort to communicate with their patients, I do not see any way in which my treatment experience will be improved by working with someone who is hundreds of miles away - and would require me to spend more time down there than I have in sick leave for a year - and is not covered by my insurance. To say nothing of being in treatment for infertility becoming my full-time job, which is about the only thing I can think of that sounds more dehumanizing than what I'm already going through. Thank you.