Wednesday, October 31, 2012

Update: I take that back

It was slow in coming, but I had horrible pain, nausea, vomiting and LOTS of despair this morning. I'm feeling better now, but

YES, I'm happy I'm have surgery.

NO, there is absolutely no point in waiting.

YES, it will be worth the money, the inconvenience, the time off work.

NO, I cannot keep living like this.

Tuesday, October 30, 2012

Something is working

It's CD1. No disappointment this time, because we took a break this month. But here I am, sitting up in bed with minimal pain: no vomiting, no writhing, no tears, no wishing death upon myself. Last month was similar; I was even able to drag myself out of bed for a work function that I could not miss.

The hard thing about my kitchen-sink approach to alternative therapies is that I have no idea what's working. My periods took a turn for the better when I started taking blood movers (Chinese herbs) during the first part of my cycle. They aren't safe during pregnancy, so I would discontinue after ovulation. Around the same time, I started fertility yoga. The creators claim that this yoga, in which you do a different set of poses for each phase of the cycle, helps with endometriosis (or in Chinese medical terms, blood stagnation). And at the same time, I started avoiding stagnating foods. I've always eaten healthy food overall, but once a week or so I would indulge in french fries, potato chips, eating to excess. For months, I've been avoiding any food that gives me that bloated feeling.

And finally, after that dreadful experience being off the NSAIDS in anticipation of my hysteroscopy, I was reminded of the magic of prostaglandin inhibitors and starting taking them liberally at the first sign of PMS cramps.

So I have no way of knowing what's working and I don't intend to try any kind of process of elimination, because I have no desire to spend a day in bed disabled by severe abdominal pain and vomiting.

I'm feeling a bit silly for scheduling surgery because of my intolerable pain, when suddenly, it's become quite tolerable. On the other hand, my surgeon was quite clear that the adenomyoma could be causing implantation failure, and I don't want to spend another year TTC, only to find out it was the adenomyoma all along.

Friday, October 5, 2012

Infertility is NOT God's will

Several months ago, another infertility blogger was lamenting the loss of the children she will not be able to bear. A commenter rushed to assure her that infertility is a part of God's plan for her. (I'm heavily paraphrasing here.) I've heard this kind of explanation for infertility, and although it is always well-intentioned, I find it to be unsatisfying and problematic.

In the Catholic tradition that has shaped me, the purpose of the reproductive organs is to procreate (and of course, to enable sexual pleasure). My uterus and ovaries do not function the way they are supposed to because of illnesses--adenomyosis and diminished ovarian reserve. Disease, cancer, pain--these things are not caused by God. In the Catholic tradition, they are called natural evils. Evil, by definition, cannot be the will of a good God.

Sure, sometimes these things prompt cultivation of virtues of patience and trust. But just as often, such trials turn us into bitter and jealous people. I do not think I am a better person for being infertile. The burdens on me this past year have been in many ways more than I can bear. (I don't talk about my job here, but it has been its own cross.) I have thought about leaving DH; I've had fleeting thoughts of suicide. I've spent days wrapped in resentment of my seemingly-happier sister who's just starting a life with her new fiancé. I've fantasized about being fired from my job. I know that I have a choice about what kind of person I am, but I promise you, it wouldn't even have been possible for me to sin in these particular ways without the unrelenting stress of infertility, my job, and DH's unemployment.

Of course, this raises the classic question of theodicy: If God is good and all-powerful, then why does he permit natural evil at all? Why Hurricane Katrina? Why were the Haitian people who've already suffered so much struck by such a devastating earthquake? Why did my cousin die of breast cancer, two months after her 30th birthday?

Rabbi Kushner argues that God has set up the best of possible worlds, even though it doesn't look that way to us. Augustine says that the fault is not with the world or with illness, but our tendency to rebel against God's will. Though each of these answers is better than "God is trying to teach me something" or, even worse, "God is punishing me for something," I find each of them unsatisfying.

I don't have a satisfying answer to this question. I have come to believe that there is no satisfying answer to this question. Instead, I believe in God's power to draw good out of evil and to make grace possible even in the midst of evil. And I believe in my responsibility to make something good out of my infertility, whether that be making room in my heart and in our home for a child who needs parents, or devoting my child-free time and energy into leaving the world a better place than I found it.

It might be unsatisfying, but it's the best answer I'll ever get.

Thursday, October 4, 2012

True and False with my RE

Dr. S, world-famous endo surgeon, has very different opinions from my RE about my fertility. Let's evaluate what she told me in the course of my consultations:

1. "I don't think your adenomyoma will affect implantation."

Dr. S says: FALSE! Although adenomyosis, unlike endometriosis, is not considered a cause of infertility, in my case, there is so much tissue, all balled up in one place. "It definitely could be affecting implantation."

Comments: This was my perspective all along. This was why I sought out an RE in the first place, so she could take a look at my MRI, evaluate the size and location of the adenomyoma and tell me whether it would affect fertility. Instead, she never even looked at the MRI records I had sent to her. She saw the adenomyoma during my hysteroscopy, but she didn't seem to think it would be a problem. F--- her.

2. "Laparoscopy is a bad idea for you. It will aggravation your ovarian reserve issues."

Dr. S says: FALSE! This is only true for women who have very large endometriomas on both ovaries. He knows I don't have such a problem, because none of my multiple pelvic ultrasounds, MRIs, nor hysterosonogram has ever shown any evidence of endometriomas on my ovaries. "In any effort to protect a woman's ovaries, REs often prevent women from getting the treatment they need."

Comments: My RE issued a blanket recommendation apart from the specifics of my case. DOR = avoid laparoscopy like a cloud of tobacco smoke. In reviewing the literature about laparoscopy and DOR, many of the articles emphasize that preservation of the ovarian function is entirely dependent upon the skill of the surgeon, something my RE never mentioned to me. Which is why we're traveling to ____________, rather than having my surgery locally.

My RE is one of the best in the country. Although only in her 30s, she is on the editorial board of the top journal of reproductive endocrinology. She is the recipient of a prestigious NIH fellowship. In other words, she's no small potato.

And yet, she seems to be making decision by virtual of a decision tree.

Diminished Ovarian Reserve? It's hopeless. Do not get a laparoscopy. Head straight to IVF.
Adenomyoma? Never affects fertility. Don't worry about it.

The particulars of my case, my adenomyoma, my ovaries, my (possible) endometriomas, were of no interest to her.

Of course, the most devastating things she said about me, she didn't say to my face: She told my pelvic pain specialist that I have a one percent chance of spontaneous pregnancy. Even though I ovulate every single month.

But she's been wrong about so much. I'm going to bet she's wrong about this.

And suddenly all is new

I wrote my last post from the depths of despair. Of all the deadly sins, despair, the enemy of hope seems to be the one that gets me every time. But there have been some big changes that give me reason to hope.

Number one is that DH got a job! It is a temporary job, to be sure, and one that takes him far from me, but one that will hopefully set him up for a permanent job closer to home in the future. And it will provide us with the money we need for....

Number two. I spent the summer coming to the realization that the amount of pain and anxiety I experience with every menstrual cycle is untenable. The despair of CD1 is one thing. The despair of CD1 combined with excruciating pain and vomiting is seriously enough to drive me to self-harm every single month. This situation cannot continue. My pelvic pain specialist in my city is, unfortunately best friends with my RE. After consulting with her (with my consent), he is under the impression that I cannot get pregnant without IVF, and that if I don't want to do that, I might as well have the adenomyoma excised. He has only removed such masses for women who were done with childbearing.

Not inclined to put my fertility in the hands of someone who thinks that I will never get pregnant, I sought a second opinion with a very famous surgeon who specializes in endometriosis. Dr. S has done this surgery hundreds of times, for women who have gone on to have children. The surgery is expensive, but now that DH has a job, we can afford it. I am scheduled for November, which means I will only have one! more! period! before surgery.

Dr. S will remove the adenomyoma, reconstruct my uterus, and remove any additional endo that he finds in my pelvic cavity. I am terrified, but others have been through worse and survived, right?