The other side of the river: reflections on a first IVF cycle

Geographical landmarks are a funny thing--sometimes being in the same place as you were when something memorable happened can bring you right back to those feelings, as if no time had ever passed. I was reminded of this last night, when I found myself across the Chicago River from the sidewalk where I paced back and forth eleven years ago during my first and perhaps most traumatic IVF cycle. The feelings I experienced then flooded me again, overwhelming me for a moment.

 I always tell my clients that the first IVF cycle is usually the worst, because invariably our expectations entering into the cycle are very high. We have pulled out all the stops and gone for the big guns. How could it not work? For many, the first IVF does indeed work--but for the rest of us, the disappointment of treatment failure is compounded with shock that treatment failed in the first place. In addition, everything is all a new experience, and our anxiety is usually higher when we don't know what to expect.

 My first IVF was an emotional roller coaster ride that was one of the most intense experiences of my life. It started out badly, when on a Saturday morning right after I started Lupron shots my RE called to tell me that our first cycle would be cancelled. I had learned a month earlier that I was a carrier of Tay-Sachs disease, genetic disorder that is usually fatal. This was not too surprising to me because I am of Ashkenazi Jewish descent. However, the cycle was cancelled because my husband had also tested positive as a Tay-Sachs carrier. This was extremely suprising to us, because he is of Southeast Asian descent and Tay-Sachs is not common in this population. "Don't worry," my RE told me, "We can do PGD next cycle to find the embryos where you don't contribute your Tay-Sachs! I've got it all set up for you, and we can do it next month!" And thus, we entered the world of preimplantation genetic testing, then in its' infancy. We would be doing a polar body biopsy, meaning that they would only be able to test the maternal genetic contribution to the embryos.


A few days later, I found myself at the genetics lab, where a nervous doctor who clearly didn't usually do procedures on actual human beings gave me a shot of lidocane, and then without waiting for it to take effect, took a sort of hole punch and removed a large divet of flesh from my arm. My pain tolerance is pretty high, but I can still remember how excruciating that was. I endured it because I desperately wanted things to work. I have a huge scar on my arm to this day to remind me of this misadventure.


 My sample was sent off to determine the exact genetic mutation I carried so that they could identify it during the PGD. I began to prepare for the IVF cycle again, starting BCP and Lupron. Meanwhile, my husband and I kept scratching our heads, wondering how he could possibly be a Tay-Sachs carrier. It just seemed so improbable. Of course, head scratching quickly turned into obsessive internet searching. After a few weeks of research, we found one lab in Philadelphia that ran a test for a "pseudodeficiency allele" for Tay-Sachs; apparently some people carry a mutation that causes their blood to react with the solution in the collection test tube, producing a false positive on the Tay-Sachs test. We took our research to the genetic counselor, who had never heard of the allele or test but agreed to test my husband anyway. It would take weeks to get the results.


 I began the stimulation process of the cycle with very disappointing results. I remember one nurse yelling at me, telling me I needed to have ten follicles on each side. "You are 32 years old; you should be doing better than this!" I began to experience a feeling of panic and dread. When it came time for retrieval, they got 8 eggs, but at day 3, only four were viable embryos. Two were of good quality. Unfortunately, the genetic testing showed that the two good embryos were the ones that carried my Tay-Sachs gene. My husband's pseudodeficiency allele test wasn't back yet. At this point, we had nothing to transfer. I was filled with shock and despair. I was downtown that day, and unable to concentrate on my work, I went for a walk along the Chicago River. I felt hopeless. I couldn't believe that after everything, my cycle ended without anything to put back. I remember thinking, "This is the end of the line." I cried for a while, and then walked back to work to complete the rest of my day. 


 I was wrong, though. It wasn't the end of the line. On the afternoon of day 5, we got a call from the clinic. My husband's results were back--he tested positive for the pseudodeficiency allele, which meant he wasn't a Tay-Sachs carrier after all. We raced to the clinic to transfer the two affected embryos, which were still alive and doing well. Nine days later, I got a positive pregnancy test. It looked like my luck had changed again. My betas were strong, and I had lots of early pregancy symptoms. Unfortunately, there was no heartbeat at 6 and 7 weeks, and I ended up having to get a D & C. I was devastated all over again, filled once more with shock and despair.


 All of those feelings came rushing back to me last night, as I stood across the river. For a moment, I was back in that time again, but my daughter excitedly squeezed my hand and I came back to the present. We were in the process of boarding a architectural boat cruise organized by the American Girl store. It was a beautiful summer night, and there were happy girls and their dolls everywhere. I was struck by what a difference it made to be on this side of the river. When my first IVF was taking place, my adopted daughter was just a few months away from being conceived in a faraway land. That long ago terrible day on the river wasn't the end of the line; it was the beginning of a journey that would span continents and years that eventually would give me so much for which to be grateful. 


 As we toured the city, I basked in the glow of the city lights and in the world of dolls and childhood imagination. I always tell people that infertility is a phase, and although the pain never goes away completely, you can have a wonderful and happy life in spite of, or perhaps because of, the experience of infertility. I say this because it is true; and if I can survive infertility and find some measure of happiness, then I know you can too. If you are reading this and you are having a hard time right now, please remember that one day, you too will be on the other side of the river. I hope that your crossing will be smooth, and happen very soon!

The RE's waiting room: a world unto itself?

During my eleven on-and-off years as an infertility patient, I logged an impressive number of hours in the waiting room of various infertility clinics, and I have a confession to make:  although I appeared to be calmly reading a magazine and minding my own business, I really wasn't.  Instead, I was watching, listening, and observing everything that went on with the staff of the clinic and the other clients.  And boy, did I see and hear a lot  of interesting things!   Of course many of the things were what you would expect; couples arguing, other clients in various stages of happiness or distress, and the occasional awkward meeting of two acquaintances, both obviously wanting to keep their treatment private, who were now forced to interact.  As interesting as those events were to a nosy nelly like myself, for me the most fascinating occurrences were the subtle looks and interactions between patients.

For instance, when I first began infertility treatment, I was in my very early thirties, and at the time, I looked much younger than my age (unfortunately, I do not have this problem anymore).  On numerous occasions, if a woman in her late 30's or 40's was in the waiting room with me, she would surreptitiously give me the once over, and then start looking really annoyed.  Once, a fellow patient started asking me questions about where I was from and if I went to school, and if I lived with my parents, which all seemed very strange, until it hit me--she thought I was an egg donor! The irony of that situation is that despite my relative youth, my underachieving ovaries were what had me sitting in that waiting room in the first place.  These looks and questions were a little upsetting to me--I kept thinking, "Here we all are in a difficult situation, and we are still making assumptions and being competitive?  Is no place sacred?"

One another occasion, I was in the waiting room during an IVF cycle, and there were a bunch of women who obviously knew each other and lived close to each other. It was as if my RE had offered a discount to their city block.  Apparently they all lived near the RE too, and they were having boastful conversations  for about how many times they had run into Dr. X at the Starbucks, the gym, the grocery store, jockeying for position about who knew him the best.  For his part, I heard Dr. X tell the nurses that this was obviously a waiting room full of his patients, as opposed to the patients of his partners, because his patients were clearly the most friendly and attractive.  Again, I found myself being irritated and annoyed. 

As for me, I spent a lot of the time in the waiting room feeling like the most infertile person in the world.  In my darker days, as someone would walk in, I would find myself thinking that she would get pregnant before me.  My clinic had us sign in with chart numbers that were sequential, and thus I could see that I always had the lowest number--hence I had been going there the longest. 

I'm curious to know about the waiting room experiences of others.  What was your most intresting experience or observation?  And do you have any suggestions about how clinics could make their waiting rooms more comfortable?

Thank you so much for reading for your comments, and if you ever have a question or suggestion, don't hesitate to email me at lisarouff@gmail.com.

IVF causes stress, but stress doesn't cause infertility: I knew it!

I've said  it before, and I'll say it again:  unless you are extremely and chronically emotionally distressed (and I mean extremely so), it isn't the root cause of your infertility.  I have long maintained that your ovaries do not care about your unconscious, unresolved conflicts or your relationship with your mother.  Your uterus is not swayed by either profound wishes to become a parent, or ambivalent feelings about changing poopy diapers at 3 am.  If this were true, the human race would have become extinct long ago.  We can hardly say that we live in the most stressful time in history--as long as humans have been alive, they have experienced feelings of stress.

Now, however, I can say these assertions with a little more confidence, thanks to some new research.  A study published in the journal Fertility and Sterility (found here) found no relationship between levels of stress women experienced before IVF and their treatment outcome.  As you might expect, they did find a relationship between treatment failure and a higher number of IVF cycles and higher levels of emotional distress.  The study's authors concluded:

IVF failure predicts subsequent psychological distress, but pre-IVF psychological distress does not predict IVF failure. Instead of focusing efforts on psychological interventions specifically aimed at improving the chance of pregnancy, these findings suggest that attention be paid to helping patients prepare for and cope with treatment and treatment failure (Pasch, et al, 2012).

As a clinician who works with individuals and couples experiencing infertility, I wholeheartedly agree with this conclusion.  To many times, clients come to me with a deep-seated worry that they are the architects of their own misery, and that their desires to have a child have caused their fertility problems.  Of course, it doesn't help that many people hold this mistaken belief, and are constantly telling them to just relax and stop trying.  

I'm afraid my own field of psychology is partially to blame for the theory that emotional conflict causes infertility.  I remember when I first started realizing I had an infertility problem, I did a search in the psychology literature on infertility.  I discovered a case report of an infertile woman, who was allegedly cured of her infertility once she finally worked through her unconscious conflicts about motherhood.  I was upset upon reading this--although I didn't feel I was excessively conflicted about becoming a mother, could my unconscious be keeping me from getting pregnant?  

 

Luckily for me, a few moments later I had to get back to work, to perform a diagnostic evaluation on a woman who was suffering from mental illness and drug dependence and who had several children, none of whom were in her custody.  She was rife with conflict, conscious and unconscious, about motherhood, and yet her reproductive organs appeared to be working just fine.  That experience, combined with my knowledge about the giant endometrioma that had set up camp on my ovary, allowed me to shake off some of these worries.  I knew somehow that feelings of conflict or mild upset couldn't be interfering with fertility--that just couldn't be right.

Too often, when we don't understand a medical, physiological problem, we tell patients that it is caused by a psychological factor.  For example, until we realized that ulcers were caused by a bacterial infection, we blamed stress and emotional distress for their development.  I predict that the more we come to understand the different underlying cause of infertility, the psychological explanation will fall by the wayside.  Until then, it is important to remember that although there is no conclusive evidence that stress causes infertility, there is a great deal of evidence to indicate that infertility causes stress, anxiety, and depression.  Thus, as the study's authors conclude, our focus should be on treating these "side effects" of infertility, not on subtly blaming infertile individuals for having these feelings in the first place.