Monday, March 23, 2015


     When you are navigating the twisted, poorly lit path from infertility to parenthood, it can feel as if you're in a distorted version of Robert Frost's "The Road Less Traveled".  Instead of two roads diverging- two roads sound wonderfully simple!-there are multiple paths, forks, bypasses, and alleys to consider.  Do you skip this month's try because you have fewer mature eggs, or do you bet on the one good egg you have?  Do you discontinue IUI procedures and save up for IVF and, if so, how are you going to get that money when the roof also needs replacing and your car insurance payment is due?  What about embryo adoption?  Is it time to quit trying to get pregnant and instead focus your money and energy on adoption, which is expensive but the closest route to a sure thing that you've got?
     This line of questioning could go on and on, and for someone like me who can't figure out where she'd like to eat in a small town of about ten restaurants, the options get excruciatingly overwhelming.
     That's why I'm feeling a bit relieved to have recently closed one door to parenthood.  And by closed, I mean slammed.  Dead-bolted.  Vacuum sealed.  Padlocked.  Just two weeks ago, I ended all chances of carrying my own child by having a hysterectomy.  And I have absolutely no regrets.
     Although I stand firm in my decision, I would be remiss to claim no sadness in choosing it.  The women in my family usually give birth to deliciously fat babies, and I have done more than my share of daydreaming about nuzzling plump cheeks, counting arm and leg rolls, and wiping food and dirt from underneath rippled chins.  I have longed to sit in a rocking chair while breastfeeding and singing lullabies.  Though it is terribly vain of me, I always thought I'd make a cute pregnant woman- all baby and darling in my maternity clothes.  And now all my visions will remain just that: sweet visions, not reality.  It's sad and it's not fair, but it's also out of my hands.  I find more peace in accepting that fact than in rehashing those old daydreams or painting myself as wronged by the universe.
     That said, I can assure that I did not wake up one day and decide to have a hysterectomy.  I blame the whole thing on the fibroids.
     During my first, hopeful ultrasound appointment with the fertility doctor, he asked me, "Did you know you have uterine fibroids?"  I did not, and my heart sank as soon as his words touched my ears.  Danielle had just tried ten times to get pregnant, and with no success.  Now, it appeared I had a fertility obstacle, too.  However, the doctor assured me that the location of my particular fibroids would not hinder a pregnancy, so I blindly- even blissfully- continued with IUI procedures.
     A few months in, I could feel a small mass in my abdomen that was hard to the touch.  I brought this to the attention of my doctor, and he identified this mass as my largest fibroid.  Though it was disconcerting to feel this lump in my belly, he assuaged my concerns by telling me that, because of my petite size, it would be easier for me to feel my fibroids, that they would be a bit more obvious in my body than in the body of a larger person.  Again, I deferred to him and did not worry much about it.  After all, he measured the fibroids at many of my appointments, and he still felt I was a good candidate for IUI.  As time passed, I began to unbutton the top button of my jeans when I felt too full and tried not to panic as I felt the mass growing from the size of a fingerling potato to the size of a fist.
     Because the growth of my fibroids was of such concern to me, I made an additional appointment with the fertility doctor.  The left side of my body was filling up with fibroid tumors; where, I wondered, could the baby fit if I got pregnant, and how could pregnancy be anything but highly uncomfortable at this point?  When the nurse midwife and fertility nurse felt my belly, I could see concern and alarm on their faces, which felt validating.  However, when the doctor came in to examine me, I got the same party line: Because I am so thin, the fibroids are easier to feel and will seem more prominent, and their location should not affect my chances of becoming pregnant.  With this information, I chose to have my fifth and final IUI attempt.  However, my intuition told me that this try had little chance of success.
     Two weeks later, we learned that my fifth IUI try was, as I had suspected, in vain.  Financially and emotionally depleted, Danielle and I stopped trying to get pregnant and put our plans of parenthood on hold.
     In the interim, we made a few overtures toward growing our family.  The April after the August failed IUI attempt, we visited a different fertility doctor for a second opinion.  He was thorough and attentive and gathered more information about my fibroids.  He corroborated some of what our original doctor had said about the location of my fibroids but also confirmed some of my worries.  While my fibroids did not disturb the function of my ovaries and would not affect my chances of becoming pregnant, this second doctor said that he would not perform IUI on me until the fibroids were gone because I was at high risk for miscarriage or pregnancy complications as long as these tumors were hanging around my uterus.  This information rang true and validated what my intuition had been telling me for months: I had no business trying to get pregnant while my body was housing these problematic fibroids.
     At this second opinion appointment, we also discussed the possibility of harvesting my eggs (I don't mean to brag, but I had an awesome store of healthy eggs.) and having Danielle carry an embryo made with one of my eggs via IVF.  She had the great uterus, and I had the great eggs, so this option was a viable- albeit expensive- alternative for us.  Of course, due to the cost, we needed some time to mull this decision over.
     In July, we met with our original fertility doctor to discuss IVF as well as the possible removal of my fibroids.  At this appointment, we sat across from him in his office, a dark wooden desk separating us.  He did not feel my belly to check on the growth of the fibroids, and he did not measure them on an ultrasound.  Again, I heard the message that it was not medically necessary to remove them, that it just depended on how symptomatic I felt I was.  We didn't leave that appointment with much resolution, but Doctor 1 put in a phone call to Doctor 2 about scheduling an appointment to discuss surgically removing my fibroids, as Doctor 2 would do this laparoscopically, yielding a faster recovery time.
     As it turns out, I never heard back from Doctor 2, and although I was instructed by Doctor 1 to contact him if I did not get a response from Doctor 2, I ended up doing nothing.  Doctor 2 practiced in another state, and I worried about insurance coverage should I cross state lines for a surgery.  Furthermore, the words not medically necessary repeated in my mind on a loop; how could I justify spending my family's money on a surgery that wasn't truly needed?  It felt selfish even to pursue this route.
     I ended up waiting a year and half to act on my worries.  For eighteen months, those insidious fibroids grew.  And grew.  And grew.
     Without ultrasounds, photographs, or any kind of measuring equipment, I could mark the expansion of my fibroids.  Over time, the lump in my abdomen spread all the way from my pubic bone to the inner edge of my hips and was about the length of my hand when measured from my wrist to the tip of my middle finger.  The entire left side of my belly was full, so much so that there was a visible and noticeable slant to my abdomen when I lay on my back in the bathtub.  In fact, sometimes I avoided taking a bath because the sight of these fibroids pushing against my skin unnerved me so.  I looked like one half of my body was pregnant, only without the amniotic fluid or the joy.  It seemed an unnecessarily cruel joke: something was, indeed, growing inside my body, but instead of a baby it was a scary, ugly, painful, and unwanted thing.
     I decided that I needed to be a better advocate for myself and my health, so I made an appointment to see not my fertility doctor but instead my local physician's assistant.  She is a kind and empathetic listener, and she does not rush to over-treat or overprescribe.  I wanted to get her opinion on this matter.
     Perhaps it should have been frightening to me to hear her exclaim, "Oh my God!" when she pressed on my belly and felt my fibroids for the first time.  Instead, I felt great relief.  Finally, someone was taking this seriously, and no, I wasn't crazy to worry.  "This has got to come out," she kept repeating.  Before the appointment was over, she had already made arrangements for me to get an ultrasound as soon as possible, and she referred me to a local gynecologist and surgeon for further examination.  While I was thrilled to finally be making headway against my bothersome fibroids, the physician's assistant said a word that caught in my throat each time I tried to talk about it: hysterectomy.  Because my fibroids had grown so large, she couldn't see another way to get them out.
     The reality of this potential surgery and the permanence of it left me in a daze for the rest of the week.  At 33 years old, I was not prepared to walk away from any chance of carrying my own child.  While it was true that the pregnancy ship had pretty much sailed for me anyway due to the fibroids and the expense of orchestrating a pregnancy around them, I was not prepared to let go of my dreams of chubby cheeks and maternity dresses.  I was in a very real state of shock, and many of the emotions of infertility that had been sleeping over the past several months woke back up with a start.
     After a colorful ultrasound appointment in which the technician exclaimed, "Good Lord, Sister!" when photographing my fibroids, it was a real mercy that I had to wait about two months to get an appointment with the surgeon.  By this time, I had had some time to process and accept the possibility of my needing a hysterectomy.
     I cannot speak highly enough of my surgeon.  At my initial appointment, he spent an hour talking with me, discussing my symptoms, feeling my belly, and gathering his own ultrasound data.  He told me some of the same things I'd heard from the first two doctors, but he did so in a more thorough way that also acknowledged that my fibroids were, indeed, pretty large.  Instead of hearing that surgery was not medically necessary, he told me that it was not medically necessary, but......
     I would be fine to wait to remove my fibroids, he said, but they would continue to grow due to my age and hormone health.  Surgery was not medically necessary, but I would become more symptomatic as the fibroids grew.  I could postpone surgery, but the surgery would get more complicated as the size of the fibroids increased. I could live with fibroids in my body, but they could grow up past my waistline and bellybutton.  I did not have a medical reason to have surgery, but I could make the choice to have the fibroids removed if it would improve my quality of life.  He did not push me into having surgery, nor did he push me into making a quick decision.  However, now that the words not medically necessary were followed by additional information, I felt more prepared to act.  At the end of this initial appointment, the surgeon set up a follow-up appointment for the sole purpose of talking about options and answering any questions I had. He was wise enough to know that additional questions would arise once I'd had some time to digest what we'd discussed at the first appointment, and I was most appreciative of his thoroughness and care.
     Given all the hoops Danielle and I have tried to jump through on our path to parenthood, it should come as no surprise that babies were on my mind as I awaited my follow-up appointment with the surgeon.  Now, at 33, I felt comfortable moving forward with a hysterectomy, but would I regret my decision at 37?  Were there other fertility options for me, and how drastic would they be?  Once I agreed to a hysterectomy, there would be no turning back, so I needed confirmation that I was making the right choice.
     At my follow-up appointment, instead of asking questions about the length of the surgery or the type of procedure the surgeon would do, I peppered the doctor with questions such as, "If you didn't do a hysterectomy, what type of procedure would you do, and what would my chances of pregnancy be?" and, "Would it be possible to harvest my eggs later since I am keeping my ovaries?"  In typical fashion, the surgeon did not answer in absolutes.  Yes, it might be possible to remove the fibroids without taking my uterus, but it would involve a trip to see a highly specialized surgeon at a facility like Duke or Chapel Hill, which is not a quick or convenient drive from our home.  Even so, the size of my largest fibroid and the way it was pushing on my uterus would make it a difficult surgery and one without a guarantee that my uterus would be spared.  Likewise, it might be possible to harvest my eggs at a later date, but again, this would take a great deal of skill and specialized knowledge.  As the doctor spoke of these options, I saw dollar signs and a lot of unwanted emotional and logistical stress.  I have never been a big believer in taking drastic measures when it comes to medical decisions.  I would not want to be kept alive on a ventilator if I were brain-dead, for example.  Likewise, my desire to carry my own child was not strong enough to justify driving several hours to doctor appointments, paying for hotel rooms and gas for the car, taking time off of work, and re-entering the ups and downs indigenous to the terrain of infertility.  Even then, all that effort would be put into a chance- just a chance- of getting pregnant.  I felt a sense of peace as I remembered my real priority: becoming a parent.  I knew I could still be someone's mom without a uterus and, with the fibroids gone, a healthier one at that.  With a sense of calm and certainty, I scheduled my hysterectomy.
     I am now almost two weeks post-op and feeling great.  The type of surgery I had, a laparoscopically assisted vaginal hysterectomy (LAVH), typically takes about an hour to perform.  Due to the size of my fibroids, the surgeon predicted that my surgery would take between two and three hours.  In reality, I was in surgery for six hours as the surgeon tried to break apart and loosen that stubborn largest fibroid.  My fibroids had already grown up into my rib cage, and the lover of gross science in me cannot wait to get a final weight count on the total mass of the fibroids.  My mom said that the largest fibroid was actually the size of a small melon, which would go a long way in explaining why my pants were getting so tight.  (And there I was blaming chocolate and wine!)  All this is to say, it's good I had surgery when I did.  I cannot imagine how complicated things would've gotten had I waited longer and let the fibroids continue to grow.  By having the hysterectomy now, I have spared myself from a more invasive, painful surgery.  For that, I feel deep gratitude.
     Strange as it seems, I feel such relief to know that I will not be able to carry a child.  If I hadn't already experienced the upheaval infertility brings to one's life, I am sure I'd be devastated right about now.  However, I have grieved enough over unsuccessful pregnancy attempts to last a lifetime.  In many cases, it wasn't the failed attempts but instead the long periods of not knowing that were the most taxing.  It is excruciating to know you are about to experience either deep grief or great joy and that the whole process is beyond your control.  To hope is scary but to self-protect seems cynical.  You don't know what to think or feel- or you feel it all- and, to further challenge you, you can't have wine or coffee.  In the end, letting go of that pendulum feels like mercy and grace.  There is a certain peace that comes from simply knowing.
     And here is what I know: I know I won't be able to get pregnant.  I know I am through with checking my temperature and tracking my cycle.  I am sure I'll never need an ovulation predictor kit again.  It is certain that I am through with fertility appointments and hormone medications.  I know, without a doubt, that I will not have to utter the words "two week wait" again.
     I also know that Danielle and I can move forward with adoption now that pregnancy is not an option for us.  As our options narrow, so does our focus.  Our goal becomes clearer and the steps to take more obvious.  The "what if's" are fewer, as are the number of roads diverging.  No, we are not out of those darned woods yet, but the paths are becoming easier to see. 
     One day, I hope we'll find the one that will make all the difference.

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