Tuesday, August 11, 2009

What to expect when you're not expecting - or, the slow erosion.

Infertility can make you crazy.

In some previous posts, I discussed how the advice from others can contribute to a sense of anxiety. What we in the world of medicine must also acknowledge is that the infertility investigation and treatment can also be maddening.

Couples embarking down this path need to be prepared for the emotional landmines that can occur. While many couples have very different causes of infertility or may get different treatments, they do share many of the same frustrations.

How it begins:
The first maddening aspect of infertility is that getting pregnant should not be difficult. After all, some people get pregnant with a single act of intercourse. Teenagers get pregnant…. some more than once. Women on the pill get pregnant. We hear women say, “He’d just walk by me and I’d get pregnant.”

So it’s frustrating to have difficulty in an area that seems to be easy for most people. This frustration can turn into guilt, hopelessness, a sense of inadequacy, a sense of injustice, sorrow or anger… or all of them at once.

How it perpetuates:
To get control of the situation, many women start monitoring their menstrual cycles. She and her husband have sex when the calendar tells them to. (Fun at first…. but this can lead to a loss of intimacy.)

Other couples seek the advice of physicians. For many couples, the problem resolves here… problem is found and fixed… medicine is taken… pregnancy happens. But if you’re not one of those fortunate couples, the sense of inadequacy grows, as does a sense of anxiety.

I’ve been on both sides of the desk on this. When my wife and I started seeing doctors to try to get pregnant, it seems every time we had an appointment, we received more bad news.:

“You’re not ovulating…”
“You did not ovulate with the medicine”
“Your tubes are damaged.”
“We tried to fix your tubes, but they’re damaged beyond repair.”
“You need IVF.”
“We got 25 eggs. Half fertilized. Only 5 are still growing.”
“You’re not pregnant.”


Then there those times when the news it at first good, but then turns bad.

Early on, before each IVF cycle, we were told that we were excellent prognosis, but with each attempt, we had the same outcome - failure.

Then there was the time we finally got pregnant. My wife's hormone levels were rising wonderfully. I will never forget the serenity that took over me and my wife at this point. I remember going to the driving range and hitting golf balls while she read “What to Expect While You’re Expecting.” We had 2 weeks of unbridled bliss.

Then, my wife started to experience pain. A friend performed an ultrasound, and where we should have seen an embryo, there was just the smallest amount of fluid in the uterus. Over the next few days, the pain escalated and finally she saw her doctor. She was still in pain, but that didn’t matter. Her emotions soared as he performed her ultrasound. He saw the baby. He showed it to her. It looked normal. It had a robust heart beat and little arm buds. He was saying everything looked good when his assistant tapped him on the shoulder and whispered something. Suddenly the doctor stopped talking and looked closer at the screen. He scanned for a moment, and then looked at my wife.

The other shoe dropped.

It seemed that this perfectly formed baby, with a robust heart beat was not in the uterus, but in the fallopian tube.

Within 3 weeks, we had been taken from the heights of happiness to a breathless sorrow. It was so cruel to be given hope, only to have it taken away. In our hearts, we knew there was nothing wrong with that baby. It was a victim of geography.

The loss of that child has changed me forever. Whenever my wife and I talk of that time, we are crushed. And when I see someone else who is losing a pregnancy or a child, I am swept back in time and feel a rent in my soul.

This is how life was for us. We were given hope. Then hope was dashed.

Still, by some accounts, my wife and I had it easy. There are couples who don’t have infertility at all, but suffer repetitive pregnancy losses. There are couple’s who have identified problems, but lack the financial means to undertake treatment. Then there are those 10% of couples in whom we can find nothing wrong. This can be especially frustrating for them.

There are many roads to the madhouse. Many infertility patients will find themselves on that road. For some, it can ruin a marriage, or enjoyment in life. For some people, the trauma suffered from infertility is not completely healed by getting pregnant or even having a baby.

Infertility patients are likely to be more worried about things going wrong in pregnancy than someone who never had trouble conceiving. I see this in patients, and it was true for me and my wife. If you've gone through a lot to get pregnant, if you've suffered many disappointments, you just simply feel like the pregnancy is high risk. You keep waiting for the other shoe to drop. You've been trained to know that it will.

In my final year of Ob/Gyn residency, when my wife were at what we thought was the end of our IVF journey (we were going to try one last cycle), we got pregnant. At the time a woman misses her menses, the average hCG level is supposed to be around 90mIU/ml. My wife's was 53. We were told that this was okay in an IVF cycle, but we were still deeply concerned. In two days, the hormone did rise as it was supposed to. Two days later, it doubled again.

It was an agonising 2 weeks until our first ultrasound. We were trying to be cautiously optimistic (which, as an aside, never actually worked for us.) I'll never forget how scared both of us were, waiting for our physician to enter the room to perform the ultrasound. Finally, once the scan began, the doctor was quiet what seemed like an eternity. I was looking closely at the monitor, but couldn't see very well from my vantage point.

She withdrew the transducer and put it aside and told us: the embryo was only half the size it should be and it didn't have a heart beat. She recommended returning after the weekend to confirm that the pregnancy was not viable. She said it wasn't hopeless, that sometimes embryos play "catch up," but the truth was all over her face. She was clearly in pain when she said this to us.

I will say without shame that my wife and I broke down. I tried to go back to work, but seeing the condition I was in, my friends volunteered to cover my shift on labor and delivery. I went home. I was badly shaken and felt absolutely abandoned. There was so little hope. Every time I had grasped at hope, I had come up empty.

Fortunately, friends around us had not given up. It's almost like they willed our outcome to be different. When I returned home, Robert Strauss (a mentor and friend at UNC Hospitals) called me and said that he just didn't believe that we didn't have a heartbeat. He said that he would be on call tomorrow and that he wanted me and my wife to come back in and get an ultrasound on the high resolution machine then.

The next morning, we got the scan with Dr. Strauss. The embryo was normal size. There was a heartbeat. A Niagara of relief and thankfulness crashed upon us.

Within days, we once again had been taken on an emotional roller coaster, and now we were on the uphill again.

Of course none of this made me less nervous. It seemed that the very earth beneath our dreams was so fragile. After that, about 3 times per week, my wife came to the hospital where I would do an ultrasound on her. We were almost paralyzed with fear before each scan.

Despite now having a pregnancy on its way, my wife could not give up her progesterone shots and I could not let go of my sense of dread.

I could not give it up until the day I called Jenifer Behrins, a friend of mine who had 4 children but had suffered severely in each pregnancy from intractable nausea and vomiting and multiple hospital admissions. I confided my fears to her. I told her how worried I was, despite how well everything was going. She listened while I spoke, then paused. Then she gave me some of the best advice I've ever received. I share her advice with nearly all my newly pregnant patients who I imagine feel much like I did about our pregnancy.

Jenifer said, "You need to enjoy this. You never know what's going to happen. You need to enjoy every moment of your pregnancy. You need to enjoy every moment of that child's life. Don't worry if he's doing everything he should be, what stage he's at, if he's advanced, or if he's slow.... just enjoy it. Enjoy every stage for what it is, because you never know for sure that you'll get another stage. You never know what the future holds."

To someone else, her advice may have seemed someone dark and pessimistic. To me, it was liberating. She gave me permission to celebrate the here and now. I realized that if I didn't enjoy the small blessings, I might not ever enjoy the big ones. It was my first step out of the madhouse.

I know not all patients enter this madhouse I allude to. Some people weather this much better than I did. I envy them. I don't know if this experience makes me a better doctor, but I'd like to think it does. I do know that it feels very personal to me when a patient does not get pregnant or has a loss. Those old emotions are like live wires, hidden just below the surface.

I know my experience affects some things that I do. When I do an ultrasound for a heartbeat, I look for the heartbeat and tell the patient as soon as I see it. With that out of the way, I go about my measurements.

I've also realized that infertility doctors can make you feel very high risk, especially if we bring you back for ultrasounds every week of the first trimester. It's a double edge sword. On the one hand, seeing an embryo grow everyweek is reassuring. On the other hand, if I bring patients back every week, it can make them feel like things are more in perile than they actually are.

The truth of the matter is this: as long as things are going well and there is no bleeding or history of recurrent pregnancy loss, once you see a normal heartbeat, the miscarriage rate drops dramatically. For most women under 35 years old, once you see a heartbeat, the miscarriage rate is about 4-7%.

The sad truth for me is that the sooner I get a patient back to her doctor, the more likely she is to feel like a normally pregnant woman. For sure, it can be hard for me to let go. It can be hard for her to let go, too. In the end, it's what we all must do, and we're all better off for it.