Kidnapped: Eating Disorders and Infertility
From the ages of fifteen to nineteen, I had a severe case of bulimia for which I should have been hospitalized. Doctors and nurses didn't know what to look for in those days and I was an excellent secret- keeper, so no one knew. Now I wish someone had known, someone who could have talked to me about the consequences of what I was doing to my body. In the dark days of the eating disorder, I had too much self-hatred to stop bingeing and purging. Yet I can't help but wonder if I would have asked for help had I known I was threatening the life of my unborn son or daughter. Today I am forty-six and unable to have biological children. Only now am I finding out how my infertility relates to the bulimia.
The day the doctor told me I could not give birth with my own eggs, I crumpled in the hallway of my apartment, crying. I was forty-two years old. The sobs came from a place that stretched behind me and before me in time; I was a small spot on an extended, horizontal line of grief. My father died of cancer when I was thirty; I had my own brief bout with cancer the same year; my first marriage to a man who was (at the time) the love of my life ended in divorce four years later; and I have mourned four dearly beloved grandparents. Not being able to have a biological child has been more difficult than any of these other serious losses.
There is something abstract and therefore overwhelming about grieving what never was. (Perhaps that is why there are few, if any, mourning rituals for infertility.) I wonder about the possibilities of a e that will never be. I regret not knowing the unique intimacy that comes from a shared biology and daily existence. I think about my grandchildren, and their children, and even their children-all stopping with me. My dad lived a full life. When he died, I was sad, but the grieving felt finite. Mourning someone who never got the chance to exist feels infinite.
I was already forty-one when I had my first and only miscarriage. (That was the closest I would come to having a baby with my own eggs.) I miscarried very early in the pregnancy, but it was still a huge disappointment. That was when I began to look for help in earnest.
Like most people, I thought infertility was a physical problem, so I sought physical answers. I first went to an OB-GYN, who referred me to a fertility specialist. Despite being in my early forties, both the OB-GYN and the fertility specialist told me to consider using an egg donor (i.e., I should abandon trying to get pregnant with my own eggs). Statistics were better in the world of alternative medicine, which showed good results for women my age using their own eggs, so I began a course of weekly acupuncture treatments that lasted two and one-half years and included swallowing on a daily basis cups full of herbs whose names I could not pronounce. During this time. I consulted with both a homoeopathist and a professional midwife who specialized in conception(1). The midwife in turn referred me to a chiropractic neurologist, whom I saw weekly for eighteen months. These treatments cost $25,000 over three years.
None of this resulted in a pregnancy, but I did become healthy again (I had had some persistent health problems following my years as a psychotherapy intern). The chiropractic neurologist in particular helped me piece together more of the puzzle about how bulimia had jeopardized my chances of having a baby.
According to both the Chinese and Western medical models reproductive health is based on hormones, which in turn are affected by what happens in your gut and stomach. After all the pies, cookies and ice cream I consumed and purged, time and again, my stomach had become damaged, as indicated by the chronic abdominal pain I experienced in my twenties. When I began to seek treatment for digestive problems in my thirties, I received a variety of diagnoses: adrenal exhaustion, leaky gut syndrome, lack of digestive acids (for which I currently take stomach-acid-replacement pills at every meal), and an open flap in my intestines. The chiropractic neurologist explained how these problems could lead to infertility. If food is not digested, tiny pieces of it are released directly into your bloodstream and the rest of your body. The body recognizes this as foreign matter and attacks the undigested food as a toxin. If this persists, the body starts to attack its own glands, including the glands that control hormones such as the thyroid and pituitary. Once hormones are not working properly in concert, the regular production of healthy eggs is interrupted, decreasing fertility.
While I know of no study on leaky gut syndrome as it relates to bulimia and infertility (let this be a call for one), conventional medical research confirms a correlation between eating disorders and infertility. In a 2008 study at a reproductive health clinic in Massachusetts, "seventeen participants (20.7 percent) met criteria for a past or current eating disorder, which is five times higher than the U.S. lifetime prevalence rate." (2) In other words, patients with eating disorders were overrepresented at the clinic, compared to the number of people with eating disorders in the general population. In addition, a Hungarian study on the hormonal effects of bulimia showed that "unsatisfactory nutrition (binges and 'crash diets') in bulimia nervosa results in hormonal dysfunction, menstrual disturbances and infertility (3). Findings are similar for anorexia, but infertility problems associated with compulsive overeating have yet to be studied (4).
My own experience confirms this research. I have ten friends who hod diagnosable eating disorders. Of these, nine wanted to get pregnant. Seven could not without medical intervention. Of the seven who tried to 4 get pregnant with medical intervention (mostly western or a combination of western and eastern medicine), only one carried a child to term using her own eggs. The one who got pregnant without medical intervention had a severe case of morning sickness that pervaded her entire pregnancy and prevented her from carrying a second child. (She chose adoption instead.) This is a condition known as hyperemesis gravidarum, whose link to eating disorders is currently being studied (5).
Researchers often attribute eating disorder-related infertility to low body weight (6). I did not have low body weight for any extended period of time, however, and neither did three of my infertile friends. There had to be another cause of our problems, and there was: age. I didn't start trying to have a baby until I was forty. That's old in reproductive years, and both the medical community and the general population consider age to be the biggest factor in infertility. Out of my nine friends who had an eating disorder and wanted to have a baby, seven started after the age of thirty-five-eight if you count me. Starting late, while it has physical consequences, is an emotional choice. In understanding my infertility, it became clear that the emotional factors were just as influential perhaps even more so. This suggests that just as eating disorders are mental illnesses with physical consequences, infertility (in women with an eating-disorder history) is an emotional problem with physical consequences.
The truth is, I was afraid to have a baby. My fear goes back to the summer I started menstruating, before my eating disorder began. My best friend moved to London, and I visited her there. When I got home, my dad's clothes and shoes were no longer in the closet. He had moved out while I was gone. With no place for my grief to go (I was strongly discouraged from crying), I turned it on myself, concluding that my dad had left because I became a woman. I wanted to return to a time when he liked me, before I got my period. I didn't have an eating disorder yet, but already I hated my body, blaming my reproductive parts in particular for the current problems in my life.
From then on, I felt that I had to fix what had gone wrong. When I was thirteen, I began bingeing, using food to comfort myself after my parents' divorce. At fourteen, I dieted in the hope that making myself attractive would bring my dad back. I lost weight. Then, at the age of fifteen, hungry from restricting, I started overeating again. After an especially large eating session, I could not bear the thought of gaining weight and I vomited for the first time. Thus began the cycle of bingeing and purging. Six months later, I stopped menstruating.
I mentioned the amenorrhea to my dad. He told my mom and she took me to an OB-GYN who prescribed estrogen. I took it for a few months but I was inconsistent with the medication. I really did not want to get my period (7).
When my menstruation returned at age twenty-three, I started thanking God every month that I had not gotten pregnant until, at age forty, I began trying to have a baby. At that point I abruptly switched to getting angry with God every month when my period came. While I believe that a woman should have sovereignty over her own body, I was overly controlling when it came to my reproductive system and my period. Why? Like my eating disorder, a controlling attitude toward my reproduction was a way to manage my fear-and I had many fears. feared my husbands, who would get angry or leave at times, and with whom I was not skilled at setting boundaries. I kept telling myself, "It's good enough, there is plenty of love in the house, just have the child," at I couldn't relax or fully commit to either relationship. I also dreaded that I would do to a child what had been done to me, and I couldn't tolerate the thought that I might hurt another. Another fear I had was fear of conflict. I deplored the constant, bitter fighting in my family, and Didn't have the confidence that either spouse and I could create a home free of emotional violence. Real as these hesitations were, however, they were not the true root of my ambivalence. I would not discover that until later, when all my attempts to improve myself, others, and my circumstances fell away.
The efforts to improve myself had begun early. I learned to read at three. I excelled in school. When these accomplishments didn't bring my parents toward me or make them into emotionally reliable people, I turned to food for comfort. Then I gained weight and felt people's disapproval, so I focused on making myself attractive, which resulted in my eating disorder. Next I tried moving faster than my inner pain by attending four colleges in four years. As a senior, I met my first husband and thought our relationship would keep me from feeling sadness. When it didn't, I sought another man. I really thought my second marriage would-and should-take away my grief. It didn't.
Having a child became my last hope. I would nurture the child so that our connection would be safe. reliable, and conscious at every level. This pining for a child caused both anticipation and anxiety as I continued to seek alternative fertility treatments.
After three years of trying and no births, the conception counselor referred me for an IVF (in vitro fertilization) attempt with my own eggs (8). At forty-three, it was hard to find a doctor who would work with me. I found one, but despite $10,000 worth of infertility drugs and all our best efforts, I did not produce any eggs to retrieve and the IVF was called off.
At that point, I decided my best option was to adopt an embryo. This is becoming more common, as women who seek fertility treatments have embryos left over after IVF cycles. I posted a profile on a Web site that matched donors with recipients. Only one person contacted me, but it seemed meant to be. We had a lot in common: she had grown up in one of the towns where I attended college. and we knew some of the same people. I used to jog by her house. Also there had been signs. I went to synagogue the day after meeting her and the Torah portion was about Moses seeking help from his tribe in order to fulfill his destiny. On my way home, I saw a stork for the first and only time on the bay near my house. Ten minutes after seeing the stork, I had the windows open to air out the first floor when a bird flew into the dining room. It was not a white dove, but still, it seemed like an annunciation.
I called the potential donor a few days later on my way to work, planning to tell her that it was a "yes" from my viewpoint: I wanted to take possession of the embryos. During that phone call, she told me she had decided to give them to somebody else.
The next day, after a night of lying awake in the clutches of anxiety (I've just turned forty-six. Time is slipping by. Maybe motherhood won't happen for me!), I ate a healthy meal and got in the car to drive to my evening job. I had a headache due to crying fatigue and the Ambien pill that didn't work. Driving over the Golden Gate Bridge, I felt like I might throw up. A black aloneness rose through the nausea, lining my arms underneath the skin like a layer of tar as I gripped the wheel. Words of despair ran through my mind: There is no one there for me. It is always the same thing. Now that my last hope had fallen through, there was a part of me that felt fundamentally the same as I had in childhood: there is no other human being I can rely on, and there never will be.
Sick as it was to wish that a baby would take away my pain, it is very common. This was, in fact, what my parents had unconsciously done to me and what had given rise to my eating disorder. Abandoned by their parents emotionally, when my parents were confronted with my human needs, their own wounds were activated. My mom reacted with anger; my dad reacted by withdrawing. As a kid, all I knew was that I had made my mom angry and my dad leave. I truly felt that there was something wrong with me. This was when the self-hatred began that later became my eating disorder.
The self-hatred, however, was secondary. First there was sadness a pure and simple despair because the people on whom I depended left, rejected, or (emotionally) attacked me. Sue Johnson, PhD, who researches attachment, disconnection from an attachment figure is inherently traumatizing." (9) This means that insecure relationships are not slightly depressing or uncomfortable but are experienced as life threatening. I had been avoiding that life-threatening sadness since I learned how to hold my breath to stop from crying. Now here it was again, rising in my arms like a bad dream as I drove through the Presidio. All the things I had done in order to avoid the grief and make myself lovable had fallen away, some by my own hard work and some by circumstance. I had no hope left-just grief and me.
In that moment, it became clear that the bulimia had always been an expression of my feelings of intense loneliness. Throwing up was a way that I could mourn with my whole body, crying out with all my limbs. A deep and unconscious part of me had been convinced that if parenthood were to prevent me from pursuing any of the things I used to escape the pain, I would not survive. Yet the moment also contained a personal triumph. Upsetting though it was to feel like the ship of motherhood had sailed without me, I felt mature and liberated, understanding that I had been working up to that moment for a long time. I needed my training as a psychotherapist to help me name the unmet attachment needs; I required the extensive support community who truly was there for me; I had to dismantle my defenses and compulsions over many years. Everything that came before-right up to the egg roll I had for lunch that gave me food poisoning-had coalesced so that I could feel the nausea and this grief directly. It became so clear that night: I had been scared to have a baby because I feared this feeling, and I didn't have to be scared anymore.
In the weeks following the loss of the embryos, I felt relieved I had been controlling others, the environment, and myself for forty- two years. I had been furious at my husband for not being a salve on my wounds and angry with God for giving them to me. I was looking forward to seeing how my marriage could transform now that I was no longer trying to make my husband into a buffer for the pain. I was curious what would happen in my life now that my energy was liberated from the impossible task of changing the world. I felt open to what might be next, no longer bound by the need to protect myself from feeling that layer of grief. I saw how these experiences would make me a better mom.
I tried to stay out of the grip of regret, yet there were some things I couldn't help but wonder. I recovered from bulimia without formal I wonder, had I received early help from trained professionals and my amenorrhea been arrested, whether my reproductive system might have been healthier. I ponder that a treatment team might have helped me stop bingeing and purging Sooner, preventing the leaky gut syndrome that has been linked to my infertility. I wonder whether treatment would have helped me identify and express the attachment wounds so I could have halted those exhaustive efforts to improve myself. I imagine how things might have been different if someone could have explained why I hurt so much and felt like an abused child, even though there was no physical violence in our house. I also think treatment would have helped me develop the skill of setting boundaries in relationships so that I would not have feared other human beings and commitment. Most of all, I question whether professional help would have helped me contact the grief earlier on, perhaps when my reproductive system was still young enough to be viable or responsive to interventions.
Along the lines of wondering how treatment would have helped me, I have made a list of things I learned that, I hope, will help you or someone you care about.
Eating disorders have devastating physical consequences that can ruin your chances to have children. If you have an eating disorder, get help as soon as you can.
Human beings experience the lack of a secure connection with other humans as traumatizing. A break in the connection, repeated over time, feels intolerable and causes tremendous grief. Untreated avoidance of both positive and negative life events (such as starting a grief leads to compensatory behaviors such as eating disorders and the family).
Working through the grief requires both (internal) ego strength and (external) community support.
There is no person, place, or thing outside of oneself that can take away the pain. Peace comes from expressing feelings and facing grief.
If you avoid grief and feelings, you will avoid other important things in your life (such as having children).
The same emotional factors that lead to eating disorders can later lead to infertility. Therefore, it is crucial to address both physical and psychological factors when treating infertility in a woman with an eating-disorder history.
Best wishes in your recovery.
Post Script, 2021: Through the generous donation by friends of an embryo (fertilized egg), I was able to carry and give birth to a healthy girl who is now 7 years old. I am very grateful to those friends and to those who helped me realize my dream of being a mom.
Footnotes:
1) While other practitioners were effective with one aspect of infertility or another, the homeopathist was the most effective at treating the factors together as a whole.
2) M Freizinger, D.L Franko, M. Dacey, B. Okun, and A.D.Domar, "The prevalence of eating disorders in infertile women," 1993, http://www.ncbi.nlm.nih.gov/pubmed/ (accessed March 30, 2010).
3) M. Resch, G. Szendei, and P. Haász, "Bulimia from a gynecological view: hormonal changes, "J Obstet Gynaecol, November 2004 (8), 907-10, http://www.ncbi.nlm.nih.gov/pubmed (accessed March 30, 2010).
4) For more information on eating disorders and infertility, go to http://www.ncbi.nlm.nih.gov/pubmed/.
5) For more information on hyperemesis gravidarum, please see http://www.springerlink.com/content/rbtw069whvpgq7k/.
6) Here are three studies linking low body weight with infertility:
1. L.S Usdan, L. Khaodhiar, and C.M. Apovian, "The endocrinopathies of anorexia nervosa", Endocr Pract, November 2008 (8), 1055-63.
2. "Chronic undernutrition leads to main long-term medical complications of eating disorders: linear growth in adolescents with anorexia nervosa, infertility and osteoporosis". From the following study: I. Nicolas. "Long-term evolution and complications of eating disorders", Rev Prat, January 2008, 58 (2), 151-5
3. "Body weight disorders are [sic] one of the first potential causes of reproductive failure in both men and women." From the following article: G. William Bates, MD, "Abnormal Body Weight: A Preventable Cause of Infertility",http://www.protectyourfertility.org/docs/bodyweight_infertility.doc(accessed March 20, 2010).
7) I have concluded that prescribing estrogen was not helpful for me since it did not address the underlying eating disorder. A Hungarian study concurs: "The authors question the necessity for immediate estrogen replacement; they consider the reversibility of the hormonal status by early treatment of eating disorders is more appropriate". From M. Resch, G. Szendei and P. Haász, "Bulimia from a gynecological view: hormonal changes", J Obstet Gynaecol, November 2004 (8), 907-10.
8) In vitro fertilization (IVF) is the process of using medication to stimulate the production of a woman's eggs, then retrieving the eggs and uniting them with sperm in a petri dish to make an embryo, which is then inserted into the woman's uterus.
9) Susan M. Johnson, PhD, "Attachment Theory: A Guide for Couple Therapy", Attachment Processes in Couple and Family Therapy, eds. Johnson and Whiffen (New York: Guilford Press, 2003).