Tuesday, December 4, 2012

Separation Anxiety

My mom left today.

There is something abnormal about the way I process separation from my loved ones. The tiny prick of melancholy most people feel when a loved one goes home after a visit is an ocean of grief for me. When I was a child, I would beg my mother not to go shopping without me. I would imagine her death in a car accident; I would imagine her funeral; I would imagine being raised by my father. Twenty-five years later, my mother is not only alive, but well enough to care for me in the aftermath of my surgery.

And twenty-five years later, when she leaves, I sob as if I'm never going to see her again.

Sometimes I worry if my separation anxiety, which happens when DH leaves to work far away, or whenever I leave my family after a visit, will prevent me from being a good mother--the kind of mother who encourages her children to spread their wings, to take risks, and to explore the world outside of home. I will be the mother clinging to her child and howling on the first day of school while the kid looks around uncomfortably and says, "Jeez, mom. I'll be home at 4 pm!"

I wonder if my children will grow up fearful and anxious. And then I think that maybe it's best that I'm infertile, because I'm not sure I can handle the emotional rigors of parenting.

I know I need to work on this, but I don't know how.

I don't know what therapy or processing would make this grief more in line with reason and thus easier to bear.

Thursday, November 29, 2012

Will Dr. F take me back?

Dr. F, my pelvic pain specialist, is my very favorite doctor. He's so smart, open-minded, thinks outside the box. We have all these interesting conversations together. If he weren't my doctor, I would want him to be my friend. And I don't even like doctors! But I've been feeling somewhat sheepish about telling him that I went off and had surgery with some other surgeon. Would he be hurt? Betrayed? Would he ask me awkward questions about why I liked Dr. S better than him?

Not wanting to spill the beans yet, I asked Dr. S if it would be okay to ask my primary care physician to remove my sutures rather than Dr. F. He said no problem, and my appointment with my PCP was today.

The only problem was that she didn't seem to know what she was doing. She couldn't tell the difference between a suture and a scab. She looked back and forth being my operative report and my pelvis before giving up and calling Dr. F for help. Dr. F!

Apparently, Dr. F is still speaking to me. He's willing to take the stitches out and do my post-op. My appointment is Monday.

Well, I guess I have no option but to go back to Dr. F. And it doesn't seem like it's going to be a problem that I didn't have surgery with him. Among all his other good qualities, he's humble.


Sunday, November 25, 2012

Wedding Bells

Thanksgiving Day, DH and I went for a long walk around my parents' neighborhood. Long in duration, not in distance as I am still not up to walking more than a tenth of a mile at a stretch. I caught a glimpse of our shadows; I was clinging to him, walking slowly and unsteadily. The band I wear to protect my incisions made my torso look substantially thicker than it is. In shadow, we looked like a couple in our seventies.

It struck me that DH and I have only been married a year and a half, but I feel like we've been married twenty.

We never had a formal church wedding. DH has been married before to a woman who left him after fourteen months with no explanation or even a good-bye. We were engaged and waiting for his annulment when my adenomyoma was diagnosed and the recommendation from the doctor was to postpone surgery until after I was done with childbearing.

We got married immediately, in a court-house.

We are still waiting on DH's annulment. Apparently, in the diocese where he filed, the wait is three years. (The priest at DH's parents' church told us it was eight to ten months.) We haven't even seen a "thank you for your application" form letter. DH is done with Catholicism. Reliving the worst thing that ever happened to him only to be met with silence and indifference broke his relationship with the Church, and I'm not sure it will ever be fixed.

Meanwhile, I was learning that I could not go through the worst thing that's ever happened to me without the Sacraments. I could not go without the Eucharist. I could not have my surgery without the anointing of the sick. I started going to an Episcopalian church. That church has been my rock these many months.

DH and I will be married in that church this winter. In front of God, our extended families and our friends, we will promise each other that "for better or for worse, for richer or for poorer, in sickness and in health," we will be husband and wife.

I'd say we've already had more "worse, poorer and sickness" in one and a half years than many couples have had in twenty. I know that when I hear DH say those words, I will be thinking that through infertility, through pain, through surgery, through depression and through despair, DH has stood by me.

Recovery Update

Turns out that I did have diaper rash--but when you're an adult, they call it a yeast infection. I've just begun a course of Diflucan and should be feeling better soon.

I'm still tired and high on painkillers most of the time, but every day, I walk a little farther, I take fewer painkillers, and I'm conscious for a greater part of the day. This is progress, frustratingly slow though it may be.

DH left my parents' house this morning and I have been feeling emotionally vulnerable and weepy ever since he left. Though he had a bad cold, we have a lovely Thanksgiving, just the four of us. I also love seeing how my parents love my husband. I know that they loved him before, but after my sojourn in the hospital, something has changed with his relationship to my family and to my parents. He is one of us in a new way.

My mom and I are flying back to my city on Tuesday. I'm not ready to go back to work a week from Monday, so I will call Dr. S's office tomorrow to see about getting another week off work. I'm trying not to feel like I'm malingering, but every time I think about going back to work in a week, I burst into tears.

Oh, I'm not sure I mentioned this before, but DH and I are benched from TTC for the next three months. My uterus needs time to heal before it could sustain a pregnancy. In a way I'm relieved to have the time for DH and I to focus on our relationship and sex lives without the stress for TTC.

Thursday, November 22, 2012

On recovery and regression

According to the information on Dr. S's website, laparoscopic surgery isn't that big a deal. I should have been discharged from the hospital after twenty-three hours (sooner, if I wanted), able to travel after seventy-two, and back to work in two weeks.

Lies, all lies.

It always sounded unlikely that I would be able to get up and waltz on home right after having my uterus shredded and surgically reconstructed. Twenty-three hours after my surgery, I still couldn't walk or pee on my own. The walking, I expected, but no one warned me about the pain of having a distended bladder in the middle of the night, crying on the toilet as DH ran to get the nurse who would inevitably drain me with a catheter so I could repeat the whole scary process a few hours later. I have a fear of catheters.

When nothing worked to induce me to pee, they put a catheter in connected it to a large bag and sent me back to the hotel where my family was staying, hoping that a few days of complete "bladder rest" would enable me to pee on my own again. I ended up traveling back to my parents house with the catheter. I was scared that I still wouldn't be able to pee during the drive and then my family would be driving around rural _____________ looking for an ER to drain me.

The irritation from the catheter made my vulva swell up to twice its size. On Monday night, when my parents' neighbor (thankfully, a urological nurse!) came over to remove it, I cried from the relief of finally having the catheter out and the remaining anxiety that I still could not void. But I woke a few hours later with a full bladder and used a tip that the nurse  suggested: I sat on the toilet and poured a bucket of warm water over my vulva and I was finally, finally able to pee. My mom did a little dance in the bathroom in celebration and my dad sent a text message to my DH.

Now, my vulva is still swollen and covered in a rash. Monday night, I ditched the mesh hospital panties for my regular cotton underwear and pads, and now I'm wondering if that was the best idea. Could I have diaper rash?

If there is anything more infantalizing than having my dad change my pee bag and having my mom in the bathroom with me cheering me on as I try to pee, it would be a case of diaper rash.

Wednesday, November 21, 2012

Surgical Findings

1. NO ENDO: Anywhere, at all. The choice phrase from the surgical report was that my ovaries, fallopian tubes, and entire pelvic cavity were all "grossly normal."

2. Adenomyoma: The mass in my uterus was larger than expected: 10 centimeters. It was all across the top right hand side of my uterus and a bit on the back side of the uterus as well. My uterus was the size of a sixteen weeks pregnant uterus! This meant that the surgery went longer than expected: six hours rather than four. I'm so glad that I went with the more experienced surgeon, despite the expense and inconvenience that entailed. What if a less experienced doctor had called my uterus a lost cause and performed a hysterectomy?

So for Thanksgiving, I'm feeling very thankful. For the health of my ovaries (despite the DOR, which I guess is really DOR), tubes, and newly reconstructed uterus. For the expertise and compassion of Dr. S. For the support of my parents and DH upon whom I was until very recently dependent for even my most basic bodily needs. I am truly thankful.

Wednesday, November 14, 2012

T - 1

The fast has begun.

Pre-op surgical consultation has been had.

The first of many doses of laxatives has been swallowed.

Happily, I have not bitten anyone's head off, including my loving husband and my dear parents who have flown in to be with me during the surgery.

Even better, Dr. S. is very optimistic about the surgery; no more adenomyomas were found during my ultrasound today, though he did say I could have adenomyosis. Also, the adenomyoma doesn't appear to have grown since last year.

Though I am a wimp about medical procedures, I'm actually feeling optimistic and relieved that it will be over soon.

Sunday, November 11, 2012

Fear and Trembling

Today, I received the sacrament of the anointing of the sick in preparation for my surgery next week. Father J anointed my head with oil, he laid his hands on me and prayed that Jesus would keep me in the hollow of his hand during the surgery and my recovery. He prayed that God would guide the hands of the surgeon and everyone who will touch me.

I know that I am loved by God all the time. But it made me feel so special to receive God's love through human hands and through the (extra)ordinary substance of (holy) oil.

Father J assured me that he would put my name on the list of the sick so that all in the parish at all the Masses would be praying for a successful surgery and my quick recovery. This made me feel loved too, by God and by God's people.

The sacrament gave me a moment of peace in what has been a very anxious week. I have irrational fears of needles (I get dizzy before a flu shot), knives, germs (I am afraid of contracting an incurable flesh-eating bacterium in the hospital), drugs (a big reason IVF was never a temptation for me), and pain. I know that most of these fears are irrational, but they are very, very real to me. In addition, I am swamped with work that needs to be done before I go, work that I cannot finish efficiently because I am so distracted by my anxiety.

I ask you, my dear readers, however many or few of you there are to pray for me, as I go into the week of my surgery. Pray that I may have courage. Pray for Dr. S my surgeon. Pray for my DH and my parents as they watch over me.

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?

Tuesday, August 7, 2012

Dark Night of the Soul

The day the nurse called to tell me that my FSH was high was among the darkest days of my life. I cried for weeks. But through that time, I had the most remarkable feeling of being loved through my grief. I felt the love of God, and the love of my dear husband, who unequivocally stated over and over again that even if we could never have biological children, he wouldn't want to be married to any other woman. I remember sitting in my favorite place at work, grading papers on a Saturday afternoon and just feeling flooded with love.

Masters of spirituality such as John of the Cross and Theresa of Avila call that experience of God's closeness and love consolation. The feeling of God's absence or silence is called desolation, or the dark night of the soul. Consolation and desolation happen independently of your emotional state, or of what is happening in your life. My period of consolation coincided with one of the saddest periods of my life. 

At the moment, I am in a period of desolation. Unfortunately, this desolation is coinciding with DH losing his job, my waning faith that I will ever get pregnant and, at the moment, horrible PMS and the knowledge that I am not pregnant.

I am finally ready to try Natural Cycle IVF but we do not have the money. We are not paying down debts; we are not saving money for adoption. DH has been looking for jobs, but every lead has come up empty. 

In truth, he lost his job months ago, but I was sick of thinking and writing about infertility. I just couldn't write about having to come up with a new plan all over again. And every plan requires thousands of dollars that we don't have. 

Above all, I am tired. I am tired of being positive, of swimming against the temptation to despair and depression. I am tired of the never-ending roller coaster of hope and disappointment. 

Every month, I think, "Perhaps things will change this month. Maybe we'll finally conceive. Maybe DH will get a job this month." And each month, nothing changes. We do not conceive. DH does not find a job. 

Nothing ever changes.

Friday, June 1, 2012

What's wrong with me, Part I: Adenomyoma

Adenomyosis is a condition in which the endometrial tissue in the uterus goes crazy, invading the muscular wall of the uterus. Like its cousin, endometriosis, it causes severe pain with menstruation.

Instead of diffuse adenomyosis all around my uterus, I have an adenomyoma, a focused growth in one, large, painful place at the top of my uterus.

Some women have pain from adenomyosis all the time. I'm relatively lucky; I have mild pain the week before my period, severe pain and vomiting on day one, and mild pain that I control completely with Aleve days 2-3.

It's unclear whether and how such an adenomyoma affects fertility. In endometriosis, the endometrial tissue grows outside of the uterus, causing a toxic environment for fertilization and affecting ovarian health. In adenomyosis, the endometrial tissue is more or less where it's supposed to be. Thus, most doctors will tell you that women with adenomyosis might have a higher chance of miscarriage, but that it shouldn't otherwise affect fertility. Anecdotally, I've seen many women on fertility forums get pregnant with adenomyosis.

On the other hand, this paper suggests that some women with adenomyosis have trouble getting pregnant (this article suggests the same). On the fertility forums, not every woman with adenomyosis gets pregnant. It seems self-evident to me that if my 5x7mm polyp could cause implantation difficulties, then surely my enormous adenomyoma could.

I would hazard a guess that since it affects the structure of the uterus itself, fertility depends on the extent of the adenomyomas/adenomyosis, as well as the unpredictable nature of fertility itself. In other words, some women with adenomyomas can get pregnant naturally, others need medical intervention, others will never get pregnant.

Although the above articles present surgery as a treatment for both pain and infertility, my pelvic pain specialist has warned me that surgery carries with it the risk that my uterus will scar closed, ending my chances at carrying a pregnancy to term. His advice last year was to wait, get pregnant, then have the surgery when I'm done with child bearing.

That was April 2011; it has been a year and obviously, I am not pregnant. Every month, the pain, vomiting, and blood loss continue. Every month I fall into despair. Some months, the pain is better than others, but emotionally, the pain gets harder to deal with.

If I continue to not get pregnant, at some point, I will have to gamble: a chance at restored fertility or infertility. All or nothing.

Wednesday, May 30, 2012

Death by Google

Diminished Ovarian Reserve
DOR success stories
DOR natural pregnancy
DOR symptoms
improve ovarian reserve
improve FSH
improve amh
adenomyoma infertility
adenomyosis pregnancy
adenomyosis infertility treatment
adenomyosis infertility surgery
adenomyoma surgery pregnancy

To cope with anxiety, some people drink. Others eat. Having been deprived of both, I google.  I google and google and google. I google the same search terms over and over again.

This has helped me to a certain extent. I know more, have found a few blog buddies, and have all kinds of theories about my conditions which I will share with you in future posts.

However, for my anxiety, it does nothing.  Nothing.

Somebody stop me.

Friday, May 18, 2012

Returning to the scene of the crime

I'm not doing so well.  I arrived at my parents' house for a visit Tuesday, and my period started Tuesday evening, which was no surprise, since we missed the egg this month.  Wednesday was my monthly day of hell, which I initially thought was not going to be so bad. Hadn't I been keeping up with my supplements, my fertility yoga, the centering prayer? Wasn't I feeling less stagnant than usual?

But then I called my RE's office to schedule my hysteroscopy, and the nurse told me to avoid all blood-thinning medications: aspirin, NSAIDs, etc. I was already doped up on Aleve, so she told me not to take any more. I thought I was over the risk of vomiting, so I had a light dinner with my parents.

Then the Aleve wore off. I took Tylenol, but, to put it indelicately, it didn't do shit. Stabbing abdominal pain, severe aching in my hips and knees, and vomiting followed, plus very heavy bleeding. I took one of my specially-compounded Valium suppositories, and continued to vomit. I took another. No effect. I finally gave up and took an Indocin suppository, which is an NSAID, but I just couldn't take any more. Ten minutes later, I was asleep.

The pain was excruciating, but worse was the accompanying despair. The deep sense of failure of not being pregnant. The hatred and disgust that my body was doing this to me again.

I missed DH, who couldn't come home with me because of work. My mother was on hand, emptying the vomit bucket at regular intervals and directing me to rinse my mouth with water, but her presence was a mixed blessing. She never knew how to comfort me when I was a child. When I was a teenager, suffering with the same damn cramps (which were longer in duration but less intense) she told me that I would feel better if I moved around.

She now understands how very abnormal this is, and I know it's hard for her when she has to see me like this, but she's no better at comforting me. I learned long ago how to comfort myself, but when I'm in that much pain, I just can't. My despair at failing to conceive finally spilled out, but her response was to remind me that we're "going to adopt anyway" and maybe I should just tell DH that I want a hysterectomy now, and that I should just "think positive."

I told her that that was Gospel of Prosperity bullshit and that I didn't want to hear anymore of it. She got the message.

That was two nights ago, but the effects of the physical and emotional trauma still remain. I thought it would be better to come home for my day of hell than to stay alone at home. But now I wonder if it's the best thing for me to be back at home in the house where I felt so alone growing up experience the same medical condition.

I wonder how long I can keep doing this, going through this monthly hell.

I can't have surgery to remove the adenomyoma, because it might scar my uterus closed. I can't conceive, possibly because of the adenomyoma.

How long before I call it quits forever?

Monday, May 14, 2012

The Master Plan

DH was home this weekend, so we had time to discuss big life things. We made a Master Plan:

Western medicine: When my period starts, I will schedule my hysteroscopy to remove the endometrial polyp. Afterwards, I will try to find a holistic gyn or (even better) holistic fertility specialist with whom I feel comfortable.  My RE sucks.

TTC/Alternative Treatments:  After my hysteroscopy, I will continue all of my mainstream and alternative treatments. We will continue to track ovulation and "actively" TTC until January. If I'm not pregnant by January, I will probably go back to eating and living the way I did before. I'll keep up the Centering Prayer, because it keeps me sane.

        -Finances: We will put $xxxx/month towards paying off debt (DH was unemployed for a long time). As soon as our debt is paid off, we will put that amount into savings for adoption. At this rate, we should have enough saved by January.

       -For now, we have pretty much decided to forego trying to adopt from [country of origin]. The program is closed, the procedure is uncertain. There are too many risks involved.

       -We have decided to pursue domestic adoption of an infant of color. We will investigate agencies and make a choice by January.

       -After the holidays, DH's job will end. In January, we will start getting together paperwork, etc. for domestic adoption.

As for me, I'm swinging between enthusiasm for adopting and despair that I'll never bear a child. All part of the roller-coaster, I suppose.

Sunday, May 13, 2012

By Any Means Necessary?

How far would I go to have a child?  The desire to have a child entails the willingness to go through the misery of morning sickness, first trimester fatigue, the excruciating pain of actually giving birth, the risks to my health.  I would be open to having a c-section if necessary for the health and safety of my child.

I've restricted my diet, given up alcohol and caffeine. I spend time every morning organizing supplements. I choke down concoctions of wheat grass and Chinese herbs.

I've endured a saline hysterosonogram. I am having a hysteroscopy in two weeks. If I could have a laproscopy, I would have one.

These are minimal interventions. If pregnancy doesn't result, the recommendation is for a round of injectables, followed by IVF.  The side effects of the "minimally invasive" fertility drugs that my RE has recommended include headaches, mood swings, abdominal tenderness, ovarian cysts. Many women report that the IVF drugs permanently change their bodies. They also carry the risks of hot flashes, cysts, and Ovarian Hyper-Stimulation Syndrome.

The risks of many interventions are also financial. Many women with diminished ovarian reserve cannot get pregnant with their own eggs. They must use the eggs of a donor, often with a price tag of $35,000.  A cheaper alternative is to ask a friend of family member to donate for you. Would I be willing to watch my sister inject stimulants in the hopes that she has eggs to give me?

Some women with adenomyosis cannot carry a pregnancy to term. To bear their own, biological child, they must use a surrogate, another womb on loan. A popular option is to go to India, where a woman will bear your child for far less than the going rate in the US.

Is it all worth it, once we have that child in our arms? Is any intervention, procedure, or transaction okay, as long as we can parent? When do we decide to call it quits?

How far would you go to have a child?

Tuesday, May 8, 2012

A Big Step

This morning, I called an adoption agency to inquire about adopting from [country of origin].

We are committed to trying to conceive. For now, I am keeping up with all of my Western and alternative therapies. I will have a hysteroscopy at the end of this month. I will continue to track my ovulation. Nevertheless, we realize that without IVF, it may be years before I get pregnant. It may never happen.

So, we are beginning to look into adoption. Our preference is to adopt from [country of origin], but this is fraught with difficulties. First among them is that their international adoption program is currently closed! The second is that I'm not aware of any adoption agencies in the US that work in [country of origin]. Like pregnancy, adopting from [country of origin] may or may not work out for us. We are open to adoption alternatives: domestic or international, but for now, we're trying to follow this path where it may lead us.

Monday, May 7, 2012

Update: Post-testing follow-up with RE

It looks like I do have diminished ovarian reserve. Although my FSH did drop a bit (I couldn't bring myself to ask the specific number), my AMH was low (.29).

In addition, I have an small endometrial polyp (7x5mm). According to my RE, polyps can secrete a substance that interferes with implantation. There are women who've carried pregnancies to term with polyps; there are also women who conceived only after having polyps removed. Removal involves a hysteroscopy, a 20-minute procedure conducted under general anesthesia. I'm inclined to do this.

Regarding my ovarian reserve, RE wants to shoot me full of fertility drugs in the hopes that ovulating two eggs at a time will increase the chances that I'll get pregnant.  I have my doubts about this, which I will explicate in another post.

If injectibles don't work, she wants to proceed straight to IVF.

She didn't seem to be pushing aggressive intervention.  She acknowledged that she has seen people with DOR get pregnant with no intervention at all. She has also seen people get pregnant with injectibles and timed intercourse.  And she has seen couples who needed IVF.

I will be scheduling the hysteroscopy as soon as I get my next period.

I do not plan to take the injectibles. I am not interested in IVF.

I am trying to come to grips with the fact that I might never get pregnant.

Sunday, May 6, 2012

Why I don't take a prenatal vitamin

At the top of every communication from my RE, there is a reminder to "begin or continue taking a prenatal vitamin." I won't be doing this. There is nothing magic about pre-natal vitamins. They contain they same vitamins and minerals found in many other supplements.

WebMD recommends a prenatal vitamin with around

400 mcg of folic acid
400 IU of vitamin D
200 to 300 mg of calcium
70 mg of vitamin C
3 mg of thiamine
2 mg of riboflavin
20 mg of niacine
6 mcg of vitamin B12
10 mg of vitamin E
15 mg of zinc
17 mg of iron

With the combination of vitamins and supplements I already take, I have all of those bases covered. In addition, calcium blocks iron absorption; if you want to actually absorb the iron you're paying for, you shouldn't take it with any calcium at all.

Finally, like everything having to do with conception and birth, pre-natals are much more expensive than your average multi-vitamin. No one desperate to conceive would balk at the price of a vitamin, so they charge more.

I'm hardly against spending a lot of money on supplements, but have given and will continue to give pre-natals a pass.

Thursday, May 3, 2012

Infertility before infertility

"How long did it take you to conceive N?" Asking my dad about my little sister's conception was pretty awkward. But I had a reason for asking.  Diminished ovarian reserve tends to run in families.  I was always sure that my ovaries were fine; I was conceived five months into my parents' marriage, when my mother was 36. She had my one and only younger sister when she was 41. I thought this boded well for me, until I thought about the four years between me and my sister.  What 38 year old postpones a second child?

Awkward pause. "You and your sister are four years apart," answered my dad.

"I know, but did you try for all that time or...." Did I really want to pursue this line of questioning?

"You and your sister are four years apart," my dad repeated.

"So, um, you tried that whole time?"

Yes, they did. They tried for two years before they were successful. "Your mother went to the Marian shrine in [country of origin] and prayed for a baby. And then she got pregnant again shortly after that."

When my parents were struggling with infertility, or as my dad would say, taking a long time to have a baby, there were no FSH tests and ultrasounds. Because they knew they had been pregnant before, they just kept trying until they were successful, when my mom was 40.

"So sometimes, it just takes a long time," my dad continued. "Remember Auntie R and Uncle N? They took five years to have a baby. They spent thousands of dollars traveling to Marian shrines all over the world. They even went to Lourdes. And after five years, it worked!"

There you go. In the age before IUIs and IVFs, the only thing to do about infertility was to pray. Rather than spending thousands of dollars on medical interventions, you could spend thousands of dollars on a pilgrimage.

Sometimes, I think about the couples who spend their savings on a chance at having child, only to walk away with their arms empty. I think about the couples who have had multiple rounds of IVF, all failures, only to conceive naturally months or years after they've given up. Sometimes I wonder if after all this medical intervention we are any better at controlling the vagaries of conception than we were when the only treatment for infertility was prayer.

Wednesday, May 2, 2012

I don't deal well with disappointment

DH is working out of town. He had been unemployed for a year, which was hard financially, and harder psychologically for him. We decided that living apart for the next several months was worth it for three reasons: 1) it's temporary 2) it will allow us to save money for adoption if we need to adopt 3) unemployment was wearing him down. But the trade off is that it makes timing intercourse with ovulation tricky.

This was my fertile week, but on Saturday DH came down with a terrible cold, followed by a sinus infection and dry cough. I was hoping he could come and visit last night, but he was still feeling too sick. He had planned to come tonight, but when I woke up this morning, my temperature was up and my cervical fluid had dried up.

We missed the egg.

Let the recriminations and catastrophizing begin:

-What if this was my only good egg?  The only one that I will ever have?

-Why couldn't he take better care of himself? Of course working 60+ hours a week plus eating out all the time will predispose you to whatever virus is floating around.

-We had to miss last month too because of my saline sonogram and DH's work schedule. We will never have a month that works for us, and even if we do, there's no guarantee that I'll produce the golden egg that month. If we take two of every three months off, the chances that we will ever conceive are that much lower.

-Women with DOR tend to ovulate early. I usually ovulate on day 15-17, but this month, my temp went up on day 14. This means that my ovulation will get earlier and earlier and I'll be in menopause by the time I'm 36.

I know rationally that disappointments come much bigger than this. I know that most of the above points are  cognitive distortions, as my therapist would say. I know that my DH deserves better than this.

I know that I deserve better than this.

Monday, April 30, 2012

Alternative Therapies: Centering Prayer

My name is Sarah, and I am anxious. I've been anxious as long as I can remember. I get anxious before I teach, every single day. I get anxious before I write. I get anxious in social situations. I get anxious before choir practice. I remember telling a couple of friends that I was getting dizzy at work meetings. "Um, Sarah?" they said.  "Those are panic attacks."

I can't take drugs for it, because all SSRIs make me sleep twelve hours a day, or more.

Every alternative-type infertility book I have read waxes expansive about the dreadful effects of stress on the reproductive system. This makes me feel terrible. I can't seem to control my anxiety, and the thought that anxiety is preventing pregnancy makes me even more anxious.

By the time Lent rolled around this year, my anxiety was out of control. TTC + bad test results will do that to you.

I decided I didn't really have any food stuffs to give up for Lent.  As soon as I got my test results I kicked alcohol, sugar, caffeine and most dairy. And I have to eat meat for my kidney yang. I decided instead to recommit to the Centering Prayer. The Centering Prayer is a kind of Christian meditation. Most of the time, when I pray, I talk to God. I talk and talk and talk. The Centering Prayer is a way of praying by intentionally listening to God's voice, rather than talking. I choose a sacred word (mine is Yahweh--and I apologize to Jews who may be reading this, but that's what it is), I invite God to speak to me ("Speak, Lord, your servant is listening). I relax and let my thoughts go. When an interesting thought comes along that commands my attention, I gently repeat my sacred word and let the thought go.

"What if I never get pregnant?" I let it go.
"What if adoption doesn't work out for us?" I let it go.
"What if I ovulate early/late/not at all this month?" I let it go.

God doesn't talk to me in English. In fact, God's voice doesn't usually sound like a voice at all. Sometimes I feel loved and at peace.  Sometimes, I battle my thoughts for my entire prayer time and I don't feel a thing, except a sense of disappointment for failing to meditate properly. I let it go.

I know God is speaking to me because my life becomes easier. I become easier to live with, more patient, less likely to pick fights with DH, more forgiving, less judgmental. I become less anxious (though I suspect that I will have a lifelong battle with anxiety).

Halfway through Lent, my DH said to me, "You haven't told me what you're doing for Lent, but I know that you're working on something, because I've noticed the difference in you and I want to thank you."

It's amazing how twenty minutes a day can change your life.

The Fertility Industrial Complex

I should acknowledge that I am currently under the care of an RE.  The tools and skills of Western doctors have helped diagnose my adenomyoma, diagnose and treat my hypothyroidism, and have reassured me that my tubes are indeed open.

If I were hit by a bus, I would want to go to the ER, not my acupuncturist's office.

However, I remain skeptical that Western reproductive endocrinology will help me have a baby.

I am skeptical of the profit structure of fertility treatments. Going to my RE's office for what is known as a baseline was really cheap: $90 dollars for his-and-her basic fertility workup, including a semen analysis for him, and cycle day 3 blood work and ultrasound for her. From there, however, the cost of treatment only goes up, culminating in $11,000-15,000 per cycle for IVF. Most people need 2-3 cycles of IVF to conceive: that's up to $45,000 for a chance at having a baby. I suspect that my RE's office offers basic diagnostic tests so cheaply because they make the big bucks on IVF.

So far, I like my RE.  I think she is compassionate and good at explaining things.  She never jumps to conclusions before considering all the data. However, I have noticed that if she can't treat something, she's not really all that interested in it.  For example, the adenomyoma: There is hardly any data out there about whether and how adenomyosis affects fertility. Anecdotally, I see people on fertility forums who have healthy pregnancies with adenomyosis, but it seems like every case would be depend on where and how extensive the adenomyosis is. I wanted an RE to look at my uterus and tell me whether I can conceive.

So during my saline sonogram, I asked her if she saw the adenomyoma. "Well, we weren't really looking for that."  What?  It's a lemon-sized area.  How could you miss it?

I think the answer is that she can't treat it, so it doesn't really matter. Similar with my suspected endometriosis.  Laparoscopy can make diminished ovarian reserve worse, so no matter how extensive the endo is, I'm not having it.  I almost wish I could have a lap, just so I could see whether I have endo.  I've always wondered, and given my family history and painful periods, it's likely, but I don't know for sure.

Is she so lackadaisical about diagnostics because she can offer me the ultimate solution: IVF.  IVF can diagnose the quality of eggs by evaluating the quality of embryos.  IVF can circuit a system that's hostile to sperm, whether its due to cervical mucus, endo, or immune-issues.

The only problem is--actually there are a lot of problems with IVF--A BIG FAT HUGE problem is that it's tens of thousands of dollars with no guarantee of success.

Our next appointment with the RE is May 7th.  It's the last big appointment when she looks at all of my test data and makes a recommendation.  I'll keep you updated.

Friday, April 27, 2012

Current Alternative and Western Treatments

Here is a current list of my alternative and mainstream treatments:

Vitamins and Supplements
B-complex (overall health and energy, plus additional folic acid)
Cod Liver Oil (immune health, plus post-colonial children swear by it)
Vitamin D (diagnosed with low vitamin D 12/11)
Selenium (thyroid function)
Zinc (thyroid function and PMS)
Evening Primose Oil - only until ovulation (endometriosis and PMS)
Vitamin E (endometriosis) Discontinued post-surgery.
Pyncnogenol (endometriosis) Discontinued post-surgery.
Fish Oil Supplement (endometriosis) Discontinued post-surgery.
CoQ10 (egg quality)
Royal Jelly (egg quality) Discontinued 1/13.
L-arginine (egg quality) Discontinued 1/13.
Chlorella (egg quality) Discontinued 1/13.
Iron (iron deficiency, diagnosed 12/11)
Calcium (bone health)
Magnesium (cramps and PMS)
Wheat Grass (egg quality and FSH) 

Traditional Chinese Medicine
Weekly acupuncture (started 4/2004)
Prescription Chinese Herbal Formula

Spirituality and Psychological Health
Centering Prayer (1-2x/day)
Yoga for Fertility (Aiming for 1x/day)

Western Medicine
Synthyroid (hypothyroid, diagnosed 4/12)

But I did everything right!

In When Bad Things Happen to Good People (a book you'll be hearing about a lot on this blog), Rabbi Harold Kushner tells the story of a couple who lost a child in a tragic accident.  When he goes to visit them, the couple looks at him and says, "Rabbi, we didn't fast on Yom Kippur this year." It takes Kushner a second to realize what they are saying: they think that God took their child as a punishment for not fasting on the day of atonement.

The idea that God punishes wrongdoing by killing children, giving people cancer, and causing various fatal accidents is called the theory of just retribution. With the exception of a few fundamentalist Christians (Michele Bachman, I'm looking at you), most people reject this idea.  We know that God didn't give our aunt breast cancer as punishment for her sins. We know that the tornado that struck the high school prom wasn't punishment for the kids sleeping together on prom night.

I reject the just retribution explanation for my fertility struggles. It's not because I slept with my husband before we were married.  Or because I used contraception. If you think it is, look at all those teenagers who get knocked-up without any problem at all!

But despite the fact I reject the theory of just retribution, I do have my own version of it.  It goes like this:  But I've lived a very healthy life!  I don't drink or eat to excess.  I barely eat sugar.  I have never smoked. I don't eat processed food. I eat ridiculous amounts of vegetables. I exercise regularly, but moderately. I don't even drink coffee, for God's sake!

I did everything right.  This shouldn't be happening to me.

The theory of just retribution is so hard-wired into all of us that we can't quite reject it.  Instead, we have merely substituted health for morality. Healthy food (whether it's vegan or Paleo or gluten-free) is the new kosher. Unhealthy people are punished with infertility.

This attitude is common among the fertile as well.  In this egregious example, a blogger thinks that she got pregnant so quickly because she worked so hard, "reading books, changing eating habits, exercising, not smoking, not drinking, doing tests, taking care of health problems, doing dental work, taking prenatals etc," in short, "doing more" than other people who are trying to conceive.

Um, no. She got pregnant quickly because she was lucky. Some people are just more fertile than others. While some things do adversely impact fertility (smoking, sugar, caffeine, alcohol, etc.) many people who live healthy lives are infertile, while many sugar-gobbling, coffee-guzzling lushes get pregnant with no trouble at all.

Why do we hang on to the theory of just retribution, despite all the evidence that this is not how the world works?

My theory is that it's comforting to this that if we work hard and do everything right, we will be protected from infertility. Conversely, it's frightening to think that infertility (or for that matter cancer)  could strike any of us, for no reason, despite all our efforts and healthy habits.

I've been on enough fertility forums to know that some people get pregnant after making a bunch of lifestyle modifications: diet, exercise, Chinese medicine, herbs, vitamins and supplements. Still others go the Western medicine route to get pregnant. But some people, despite all of their efforts, despite tens of thousands of dollars in fertility treatments, never do get pregnant.

The frightening truth is that we have limited control on whether we ever get pregnant.

The frightening truth is that a lot of really big things in our lives are ultimately beyond our control.

The frightening truth is that this is the human condition.

Thursday, April 26, 2012

Enter Sarah

First things first:  At the time of this writing, I haven't actually been trying to conceive all that long--only nine months, to be exact.  I have several complicating factors, including periods so painful they make me vomit every single month.  My pelvic pain specialist advised me to go to see the RE if I wasn't pregnant after six months of trying.  My cycle day 3 blood test and ultrasound suggest diminished ovarian reserve, my pain suggests endometriosis in addition to a lemon-sized adenomyoma in my uterus.

So even though I don't have an official diagnosis of infertility, I am terrified.  Terrified that I won't be able to have children without a cascade of intervention that I don't want.  Terrified that I won't be strong enough to opt out.  Terrified that adoption will end in dead ends.  I write in the hopes of quelling the terror.  I write for courage to face the unknown.  I write to find companions on the journey.

I am not an optimistic person by nature, (just ask my DH).  I am like Sarah, cynical, doubting, needing to control things.  One day, God made her a promise, and such was her cynicism that she laughed in God's face.

I write praying that one day, I will laugh too.  But unlike Sarah, I will laugh at God's goodness and generosity to me.  One day.

Saturday, March 17, 2012

TTC Timeline

1988-1994:  My period starts at 11 years old.  I have horrible pain for 3-4 days every single month.  I miss lots of school.

1995:  Sophomore year in college, the doctor puts me on BCP after a 21 day period.  I get depressed.

2000:  I go off the pill in hopes of finding a natural solution.  A naturopath puts me on raspberry leaf tea.  My depression lifts.

2002:  I meet the love of my life (or that's what I thought at the time) and go back on the pill.  I get depressed again.

2003:  I finally realize that it's the PILL that's making me depressed.  I stop taking it that cycle and feel like the sun has come out from behind the clouds after a solid year.

2004:  My periods become unbearable. In desperation, I seek out acupuncture even though I'm a broke grad student.  I break up with the boyfriend.

2004-2009:  My period pain is reduced to one awful day, and after that, I feel fine!

2010-2012:  That one awful day of my period gets worse and worse.  I vomit, I get so weak I have to crawl to the bathroom.  I have to stay home from work in bed for a solid day.  The next day, I have no abdominal pain, but I'm very weak from vomiting and blood loss.

Spring 2011:  Diagnosed with an adenomyoma, a lemon-sized growth in my uterus.  Doc decides that since I want to have children, it's not worth the risk of pelvic-scarring that surgery would bring.  He prescribes rectal valium for pain and anti-nausea suppositories for the vomiting.  Fiance and I start trying to conceive.  I work at a Catholic school, but we're getting married this summer and some babies are born early, right?

Summer 2011:  DH and I get married!

January 2012:  Six months of trying has borne no fruit.  First trip to RE.  FSH: 17.8, Antral follicle count: 8

March 2012:  Consultation with RE.  FSH levels make no sense given that my periods and ovulation are as regular as the moon.  Follicle count is also better than she would have expected.  Perhaps endometriomas on my ovary are impeded ovarian function?  Laprascopy is contraindicated because it risks further damage to my ovaries.

April 2012:  More tests:  Tubes open.  Uterus has one endometrial polyp.

Hypothyroidism.  Start low-dose synthyroid.

May 2012:  Diagnosis: Diminished Ovarian Reserve

May 24, 2012: Hysteroscopy. Polyp is no more.

September 2012: Consult with Dr. S, world-famous endo surgeon. RE is full of shit. Decide to remove adenomyoma and get laparoscopy.

November 2012: Surgery: Adenomyoma Removed. No evidence of endometriosis. Benched from TTC until February 2013.