Confessions of Subfertility
Somewhere along the line doctors must have figured out that it wasn’t nice to call people infertile. No one in the medical community has ever called my husband or I infertile, according to them we suffer from ‘subfertility’. After four years, seven IVF cycles, twelve cycles of oral and injectible hormone therapies, three pregnancies lost and the cost of a mid-sized new car, we have little hope of ever being able to have genetic children.
Most people that I see on a daily and weekly basis know that this is my reality. There comes a time when it affects so much of your life that you have to be honest with people and let them know why you have to cancel at the last minute, to rush to the clinic, or can’t attend their function at a particular time, when you need to be injecting or taking a suppository and letting your body absorb the (hopefully life-giving) medication. Yet there are only a few people who actually know the full details of the journey. These people are special. Some of them learn along with you, riding the tsunami of emotions as you wait, hope and grieve together. The family and friends who choose to take that intimate ride with you are more precious that words could ever express. Another special group of people don’t need to know the details, having been there themselves, they can go for months without seeing you and still read the lines on your face to know what every moment has been like. The majority of people have a generalised kind of empathy, or sympathy, for the situation, but can’t really get their heads around it. It is for these people that I have decided to write, not because I am looking for sympathy, but so that you can step into someone else’s ‘subfertile’ shoes for a moment, and be more sensitive to their situation.
Yet this is also a kind of love letter to all the past, current and future women and men who have and will be labelled ‘subfertile’. I feel for you. One of the best pieces of advice I can offer you is to find a community, a tribe of people who you can be honest with, and who are going through the same thing. For almost a year now, I have been teaching fertility yoga at Genea, one of the biggest fertility clinics in Sydney. In that time I have been privileged to meet and become friends with subfertility patients of all different ages, lifestyles, experiences, beliefs, diagnoses and outcomes. Teaching is a magical renewable resource. You give to your students but somehow always receive so much more back. More than anything else I have done on my own fertility journey, connecting with and supporting other patients has given me perspective, empathy and a community. Not only does it release me from the feeling of profound loneliness in the struggle, it rejuvenates hope, when hope seems impossible. Like many IVF patients, I used to see other women’s pregnancies as a threat, an enraging aggressive act of god sent to remind me of my own failure to conceive. Working with pregnant patients helps me remember, as I see the ‘happy pregnant woman’ on the street that everyone has their own struggles, whether it be around conceiving or not – there is no such thing as an easy life. Except for, perhaps, my dog’s. That doesn’t seem like too difficult a life.
As much as I can now celebrate other women’s pregnancies, they still hurt. They are a bittersweet pain, like my birthday, or Christmas, both being reminders of another childless year. They hurt on the same level as attending our friend’s children’s birthday parties, particularly those who were conceived since we have been trying. It is similar to the pain of interested inquiries from friendly acquaintances about ‘when we will start trying’ or if ‘we’ve thought about kids’. The answer is yes, we have thought about it. A lot.
Most people who have never been through fertility treatment can empathise with the difficulties of the treatment itself. The countless internal vaginal ultrasounds, literally thousands of bloodtests, surgeries to pierce ovaries and remove eggs, run dye through fallopian tubes and scrape or burn away uterine lining that has somehow found its way outside the uterus. The process desensitises women from their bodies enough to be able to give themselves multiple injections daily, insert creams and pessaries through the vagina and take nasal sprays and pills that can feel like poison, literally making them sick. The hidden reality is that none of this compares to the pain of losing hope after hope that you will soon hold your baby in your arms. I have had five embryo transfers meaning that the beginnings of a genetic code for five individual babies have entered my uterus but failed to become children. Yet none of them hurt so much one little frozen embryo that looked perfect, but never survived the thawing process to make it back into my body. Somehow this loss felt more personal, like I had spent months looking forward to meeting this frozen baby-beginning, to only be rejected by the child who couldn’t even make it back from the petri dish to greet me. Of course this is ridiculous. Of course there is no personal in this process, there is no child refusing to rush into my arms. But that is part of the problem.
They say there are five stages of grief: denial, anger, bargaining, depression and acceptance. For patients going through seemingly endless fertility treatments there are only four stages; acceptance is impossible until there is resolution. Each lost fertilised egg, each lost embryo, each lost pregnancy is grieved for as you would grieve the loss of any loved one, or any cherished future. Acceptance is consistently delayed by the onset of the next cycle, offering new hope, and new chances to have that hope devastated. Finally acceptance is achieved in one of two ways, either a baby is born, and all the previous lost babies can be fully grieved, or the couple decides to move on. I have seen patients crushed by this cycle of grief. Unable to work, unable to leave bed for days at a time, unable to continue their lives as they knew it before.
My husband and I are rapidly falling into the incredibly frustrating, ambiguous category of ‘unexplained infertility’. Approximately 25% of all couples who seek assisted reproductive technologies (anything from a simple ovulation-induction pill to full blown out IVF-ICSI cycles) are eventually diagnosed with ‘unexplained infertility’. In more practical terms, the diagnosis means that the doctors don’t know why we can’t conceive. Couples like us are usually quite young (late 20s or early 30s), fit and healthy (neither smokers or heavy drinkers, eat healthily and have healthy BMIs), have no genetic mutations that would prevent embryos from developing, and eggs and sperm look perfectly normal under the microscope. The woman’s fallopian tubes and uterus look perfect, and there is no endometriosis (abnormal growth of the uterine lining). Sometimes there are underlying issues, as in Polycystic Ovarian Syndrome, but this condition is so common that one in four women suffer from it, and obviously, most of them conceive without problems. In reality only one in six couples will ever seek fertility treatment, and the majority of these are overcome without needing to resort to IVF at all. In the cases of ‘unexplained infertility’ doctors, embryologists, scientists and researchers are unable to answer the question of why embryos don’t grow. They simply know that they don’t, or haven’t yet.
One day I hope to be able to update this story. I hope to be one of those ‘success stories’ that offers others inspiration that ‘miracles can happen’. This doesn’t necessarily mean I will have my own genetic children. Some of the most inspiring people in my world have found their children through donors, surrogates and adoption. One of these women gave me the best gift anyone has ever given me, in a few simple words. She said:
‘No matter what happens, I am here to tell you that there is light at the end of the tunnel. Relief is coming, either way.’
It is that that I cling to in my darkest moments, when I am no longer sure it is all worth it. That is also what I want to offer to all the women and men who ever feel utterly, desperately lost to this process. Relief is coming. In the meantime, through the wait, try to dance. Dance literally and figuratively, especially in the rain. It really helps.
Posted on February 1, 2015, in Asana, Philosophy, Writing and tagged children, fertility, grief, hope, hormones, infertility, IVF, loss, miscarriage, motherhood, pregnancy, pregnant, subfertility, women's health, Yoga. Bookmark the permalink. Comments Off on Confessions of Subfertility.