Monday, August 2, 2010

it's over, isn't it?

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.

17 comments:

  1. Misfit, you were blunt in your post so I'll return the favor (my best intentions, here.) The other bloggers who went to Tepeyac were shafted as well in terms of good treatment. You are quite clearly a very intelligent person who deserves good treatment. If I were you, (and I can't imagine the kind of frustration and pain you're going through) I'd quit Tepeyac and then immediately find the best specialist I could in my area to treat my physical pain and forget about getting pregnant for a long while. I'm very sorry these experiences are happening to you. Continue to pray. God needs you. I'll continue to pray for you!

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  2. (((HUGS)))

    I have no answers, obviously. You know your body best, and it sounds like you've thought about this a lot. I can hope that what you think is happening isn't happening, but how arrogant is that? To think I know more than you do?

    I'm sorry your RE is so hard to get in touch with. I used to think all of them were as great as Dr. Optimistic in my former town -- and then I moved here, where there is a grand total of 1 (yes, ONE!) fertility clinic in the ENTIRE STATE. Since competition isn't a factor, they treat their patients horribly and are impossible to get a hold of, never return phone calls, etc. I absolutely HATE them and am NOT looking forward to, by default, having to use them whenever we decide to cycle again.

    I wish I had a magic answer, and I know you do too. I'm thinking of you, though, and sending lots of bloggy love your way.

    Jo

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  3. Good for you to use fertilityfriend - but bummed to read that you think the cysts are back. I am impressed that your hubby is keeping an eye on things, too. You've got a good one!

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  4. *sigh*. I really wish we could meet in person and complain over this together with someone who completely understands! My case is different from yours, but same end game...no idea how to get pregnant. I have reached this "I think I quit" stage several times and honestly, I wish it would just stick. I feel like life would be easier if I could just accept the fact that I will not have children who look like me and either a) adopt or b) get on with life. It's so much more difficult to do than to conceptualize!

    I'll pray for you today that you are at peace with the decisions you're making for your future and that nothing will stand in the way of God's plan for your life.

    Oh, and last night I had a dream that God placed two unrelated toddler girls (1.5 years or so) in our lives unexpectedly...I was madly in love and uber protective from the minute I saw them. I didn't fall asleep thinking about fertility and it wasn't heavy on my mind yesterday at all. I wonder if God is trying to prepare me to adopt??

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  5. What about seeing Dr. B at Tepeyac? I really credit him with getting me healthy, even though he did pass me off to Dr. L for surgery and then she took over my case by default. I think it's absolutely terrible she's not responding to you, and I highly doubt Dr. B would ever do that. I love him, while I have some issues with her. In my experience he treats patients individually (although he did put me on Tamoxifen because he knew Dr. L liked it) and really listens to your suggestions. They have very different approaches. I don't know, maybe you started out with him like some of us did and maybe he's not an option, but I thought I'd throw that out there.

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  6. I wouldn't dare mention Dr. H except to say I wouldn't be willing to travel that distance for long distance care, either. I wouldn't go to PA either except that I live ten minutes from the doctor that's been suggested. There's a point where everyone needs to decide just what they are and aren't willing to do. I wish I had another suggestion. All I can offer right now are my best thoughts for you.

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  7. So don't shoot me for suggesting this, but can you send all of your records to Atlanta to the CEC? You could at least get a second opinion on your endo treatment (they obviously don't do fertility treatments) and see what they would recommend surgically. I'm not saying your doc didn't do a good job on the lap, but after my first two surgeries here in MD my pain would return at 7 or 8 months post lap and surgery would happen at month 11 when I couldn't stand the pain any longer (or could no longer walk). I'm 16 months post-3rd, and even though I'm not pregnant, I'm not in pain. And that is huge.
    What I liked about them was I overnighted my records and the doctor called me the VERY NEXT DAY. I spoke with the surgeon directly, which was awesome.
    One thing I had told DH all these years was that there's no way, regardless of whether I got pregnant or not, that I could live long-term with the pain, so our first priority was endo treatment. Not everyone needs a hysterectomy (and not everyone who has a hyst gets rid of all the pain), but I think Dr. Sinervo & Albee are very honest about your options.
    Anyway, off my soapbox, sorry.
    I think it's ludicrous at the lack of communication with your doctor at Tepeyac. If they don't have any clue what to do with you, at least they could refer you to someone else! That is ridiculous.

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  8. You seriously crack me up! I mean, I know you were serious, but I love the way you just put it all out there! You rock!

    I'm sorry you are feeling so worn out from all this though. I wish there was a easy answer for all of us still going through it and I agree, there comes a point where you just don't feel like you have anything left to give or anything left you're willing to try.

    I'm only doing the bare minimum from this point on myself. It's manageable for me and it doesn't make me crazy or exhausted every month. And if it doesn't one day get me pregnant, then I guess I never will be. But I do hope you can find some happy medium for you whether that be finding something else manageable to try or feeling ok with stopping the search.

    Just know I'm still praying. It's not much, but it's all I can offer to you, my friend!

    Hugs!

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  9. I'm not going to Dr. H either...can't. He's not covered on ins...and he is far away for us too. I don't want a payment plan either. We have enough of our monies tied up with mortgag.e payments,...etc. Right? I just plain think IF is exhausting...I know I've tired of it and now my dh and I are just praying on a future adoption (when I'm done with s'ting). IF is not that easy to figure out. Ugh...sounds like you are doing what you can...and with prayer...that's all one can ask for. Praying for you!

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  10. I am upset for you at the circumstances and I am convinced there is something that will work for you out there. I am sorry, this is clearly frustrating. I don't know what I would do if Dr. h wasn't covered by insurance. It'd be tough adn I can't say I would go there. (I will say though that I only went there once and the rest was easily covered with once per month phone calls and once per month blood draws-just saying). I am not suggesting you do that at all, I don't have an answer for you, just a listening ear. I think that there is something for you out there, but it might take a lot a lot on your part and it may or may not be what you are interested in doing right now. That is certainly your choice and balance in life is certainly important. We all have to draw the line somewhere. It sounds like you are at a crossroads and I will def pray for you for guidance in next steps.

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  11. I don't have any advice, but like WR said we are out here to listen to any frustrations you might have. I'll be praying for you.

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  12. I wish I had some good answers but I don't....just wanted you to know I was thinking of you and like those before me wishing you well.

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  13. I don't have any advice, but I do have lots of love for you.

    This is something that has sort of been touched on already, but I just want to comment again on how badly is SUCKS that there are so few options when it comes to infertility clinics and doctors. In my state there are three - one that is so far away it wouldn't be a reasonable option and two in my city. Of the two in my city, one had such shitty statistics I knew it would be a waste of time. So I went with the obvious choice and had a doc who was super weird and too busy. It sounds like you could really use a second opinion for treatment options and it is a crying shame that there aren't more options out there for YOU for doctors and clinics.

    Just another bullshit thing about being an infertile.

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  14. There are times that I am reminded that our clear-cut situation is a hidden blessing. I really respect your decision to keep coping with IF from taking over all of your life. If there were a potential medical Mecca for us, I don't know what we would do - and I am glad I don't have to find out.
    It's also helpful to other people out there that you are providing helpful information on your interaction (or lack thereof) with doctors. If I were considering that practice, I would be undyingly gratfeful to you.
    With our different medical histories, I can't make suggestions or even comment on your current symptoms other than to say I am very sorry that your experiencing discomfort again so soon after surgery.
    Thinking of you - and continuing to pray that a path becomes clear for you h

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  15. I'm on the list of non-PCOS taking femara. I had next to no CM this last cycle. I'm going to need to beef up my B6 and maybe even add something else. I pray for you :)

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  16. The more I hear about Tep. the more I really REALLY dislike them. Seriously. Tamoxifen????? Get with the program, people, and STOP pretending to be what you're not!!! Yes it's lovely they are pro-life- awesome start. But imho they are schmucks in medicine.

    Traveling to Omaha is absurd. But PA?? (Don't kick me in the shins.) Not far at all, and if I could count all the people on one hand who have 1st dealt with Tepeyac THEN gone to PA and got healed/pg - I would. But I can't. I would have to use 2 hands ;) And then add to that all the people who did not go to Tep. first, like many of my IF clients (including a 43 yr old)...

    I know the success stories are not what you need right now. I get it. I hate them as much as the next guy. I'm just throwing it out there as an option for not-too-far travel, and definately NOT a full-time IF job. You go at your own pace. But at least you have a highly skilled, very smart man on your side who has never prescribed Tamox 'cuz he hates it, and equally hates Clomid. We don't call him Magic Sausage Fingers for nothin' ;)

    Feel free to make a voodoo doll of me after this commment. But I had to try to give you hope. If nothing else, I agree with airing the chapel - just get the F away from that Center, pronto!!

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