As a doctor, I helped women trying to conceive. Then I became a patient
Three and a half years of fertility struggles later, I feel more like an expert than I ever expected to be
As a family doctor with a special interest in reproductive health, much of my work is caring for patients who are pregnant, who are trying to become pregnant or avoid getting pregnant, or who are struggling with miscarriage or infertility.
Over the past few years, I too have become a patient going through infertility treatment and have had to cope with the burden that this carries emotionally, physically and financially. My husband and I deferred starting our own family until our late 30s, after we were settled comfortably into our careers and were together long enough to have travelled and enjoyed our childless freedom. Three and a half years of trying to conceive later, I feel more like an expert than I ever expected to be.
In our journey, my husband and I have been labeled infertile, sub-fertile, unexplained, having decreased ovarian reserve, unlucky and just plain old. I have sat in the cold waiting room gowned in blue with my fellow patients, avoiding eye contact to preserve the already limited privacy. I've heard the follicle counts of others while waiting in line outside of the ultrasound room, frustrated that this incredibly personal information was being shared without consent. I have plunged down the dark hole of Internet searches and chat forums trying to gain some comfort that our less-than-optimal numbers translated into positive results for others. High-dose hormones in injection, pill, patch and vaginal-insert forms have sent me through emotional and physical upheaval. We've laughed about the tiny "donation" room and the random selection of adult material available. I've attended social outings and ordered glasses of wine – that went untouched – so that people would not ask if we were trying or pregnant. We have felt the heartbreak of getting a period, a physical stain of failure, and then the renewed sense of hope to move on the next day. I have felt the toll it has taken on my husband as he comforts me while he himself has limited supports, as men are not given the same level of care as women through this process.
As I am writing this, we are going through our second in-vitro fertilization cycle. (An IVF cycle is a process in which the ovaries are medically stimulated to produce a large number of follicles that are later retrieved through a minor surgical procedure. The follicles are then analyzed to see which contain potential eggs that may be fertilized in the hopes they will become viable embryos.) We are currently in the week of waiting for the lab to call us with daily updates informing us of the number of embryos that survived the night. It is as awful as it sounds.
We went through five failed intrauterine inseminations (IUIs – sperm is washed for the fastest swimmers and then inserted into the uterus) in our first year at the infertility clinic, and we had our first IVF cycle last year. In the first IVF round, we had a low response rate but were fortunate to have three embryos to use, of which one took. We were blissfully pregnant for seven weeks until the heartbeat stopped and we miscarried.
I generally do not share my personal stories, but it has become clear that we need to discuss these things openly so we can all feel a little less alone. As with any topic related to our reproductive organs – such as miscarriage and abortion – infertility can carry a significant stigma that makes it difficult to discuss.
Earlier in my career, I understood the process of conception and infertility through my patients' experiences and from lectures that taught me what tests to order and when to get the help of specialists. When I did refer my patients, I had no idea what I was sending them into, a sentiment shared by many of my colleagues.
Now, having gone through infertility as a patient, and even in my privileged position as a member of the health-care system, I have experienced first-hand how it feels to navigate the complex and sometimes scary health-care maze. My consolation is that I am now better equipped to support my own patients as they navigate their own journeys. I have changed how I refer, the advice I give, and how I emotionally support them to help avoid the pitfalls we faced.
Here are some of the tips I share with my patients:
Timing of pregnancy
Before, when patients asked about how to prepare for pregnancy, I would sugarcoat the issue of age and fertility by giving the few examples of patients I knew who were able to naturally conceive in their 40s. I have stopped tiptoeing around the issue and now have more open discussions with my patients about the decline in fertility potential as we age. It gets harder to get pregnant and maintain a pregnancy as we get older, especially after age 35. If childbearing is something that is in your future plans, consider doing it earlier than later, if you can.
Choosing your fertility clinic
Our clinical guidelines recommend referral to a fertility clinic if a patient has been trying to conceive for more than six months if they are over 35 or for over a year if they are under 35. In the past, I would choose clinics based on location and patient preference. Now, I expand my questions to include their preferences for cost considerations and convenience.
While your provincial health card covers some costs of testing, there are potential extras to consider, including administrative and procedural fees. In Canada, an average IVF cycle will cost approximately $10,000-$20,000 and there are no returns, discounts or redos if it doesn't work out. If you live out of town and have to travel in for treatment and monitoring, consider the costs and budget ahead for accommodation and transportation. If you have a drug plan, check with your pharmacist for what is and isn't covered, as some medications that are used are not unique to fertility treatment (i.e. progesterone and estrogen supplements) and may actually be covered.
In addition to general costs of procedures and medication, there are some tests that may not be covered by provincial health-care plans. Ask if every test that is not covered is needed and proceed armed with knowledge that you are doing only the medically necessary tests.
A little-known bonus of infertility treatment is that the costs can be claimed as non-refundable tax credits. Most procedural and drug costs are eligible medical expenses. The amount you get will depend on what province you live in.
Cycle monitoring – schedules and convenience
While infertility can seem to put a pause on your life, the majority of patients are still working, taking care of their families or have other commitments. If you're going through a fertility cycle like IVF or IUI, it may involve going to a clinic 3-4 times a week or more. Most cycle monitoring (ultrasound, blood work) is from 7 a.m. - 9 a.m., on a first-come, first-serve basis, and you can usually expect to be in and out in 45 minutes or less. After your tests, you may meet with your nurse or doctor to review next steps and medication. Sometimes, they will communicate with you via email, which can save time. This process varies, so before committing, review how timing works to see how it can fit with your schedule.
Be an active participant in your care at a clinic you trust
It is not uncommon for people to change clinics at some point for any number of reasons, from dissatisfaction with the care to not wanting to be at a clinic where there has been a failed cycle. This initially made me uncomfortable, until we also decided to leave the clinic we started at. We had a different nurse every day, and we rarely saw our doctor. Errors, although minor, were made with our prescriptions. When we attempted to address these concerns, I was met with "Well, Sheila, you're a doctor – you know that mistakes happen." In the infertility journey, when every step you take to prepare your body feels like it has to be properly done to ensure optimal results, one error, regardless of how small, can feel like you've lost a month of trying.
Going through fertility treatment is a vulnerable process and you have to trust the clinic you go to. If you do not, ask for a new referral. If this is not possible, it is your right to ask for clarification on your treatment protocol and voice your concerns. Keep a file of your medical information that includes records of your cycles, medications, monitoring results and any tests, especially those that you pay for out-of-pocket. This record is also helpful if you change clinics.
Minimize errors by knowing your protocols and medication doses. Not all pharmacies know that fertility clinics use higher-than-normal doses of hormonal therapy. Some of my medications had their doses "corrected" at the pharmacy to about half the amount in the actual prescription. We were able to reach our nurse via e-mail to confirm and correct, but this was a fortunate catch. If its easier, just have it dispensed from the clinic and submit receipts to insurance if you have coverage.
When most aspects of fertility care can feel out of your control, it can be helpful to state how you'd like to be informed of your results, especially pregnancy tests. If you know that you're not going to be sitting with your partner or support when the phone rings, ask your clinic to leave a message so you can be together for the news.
Take care of yourself
Since going through our own journey, I realize now that I did not do a good enough job of supporting my patients and emphasizing the importance of self-care. Despite my medical background, I still threw my legs up in the air after sex (no evidence), ate a lot of supplements (some evidence) and stopped exercising (despite evidence to the contrary), all to try to control a seemingly uncontrollable situation.
There are ways, however, to regain some of yourself even if you feel like your body and mind are no longer working for you. We were able to find balance by returning to exercise, starting with acupuncture and working with a naturopath to help clarify the complexities of supplements. I also saw a therapist for support that was invaluable, especially when I was feeling at my lowest. These additional activities add extra cost, so consider what is within your budget and what will give you the most support.
Lean on others
The topic of infertility treatment is sensitive enough without having to navigate conversations with people who mean well but can cause distress with unsolicited advice. Limit your discussions about fertility to individuals who will support and nurture you. One of my girlfriends introduced me to a neighbour who was going through a similar process and we've been anonymous IVF pen pals since. It has been incredibly helpful. An excellent Canadian resource is www.fertilitymatters.ca; it has several blogs, online forums and information on local support groups that can be found across the country.
Find someone (or something) to nurture
I now counsel my patients that if their wish is to grow their family, they could consider opportunities that allow them to take care of something or someone. My husband and I adopted a puppy who has been a saving grace through our journey. With her, I started running again and she gave us a source of comfort with each failed cycle. Or consider buying a plant and watching it grow – something you can nurture that brings you some joy. Try to keep up the activities you enjoy participating in, even if you have to schedule them. This way, you can keep infertility as a part of your life but not allow it to be all-consuming.
Being both a patient and a member of our health-care system, I know there is more we can do for our patients who struggle with infertility. I am extending this conversation to colleagues to help them understand the patients' perspective. Fertility clinics should provide better support in the form of groups and workshops that are low- to no-cost to ease the emotional and financial burden of treatment. Systemically, we should be finding ways to increase access to fertility treatments that are out-of-reach for so many, due to cost.
If you are trying for pregnancy and it hasn't happened yet, know that you are not alone. I encourage you to reach out for support. Speak to your family doctor about getting the right referral, where you feel you are being heard and cared for. Stay strong, arm yourself by doing your research, make your wishes clear and surround yourself with people who will nurture and support you in this journey.
Sheila Wijayasinghe is a family doctor at St. Michael's Hospital and the medical director of primary care outreach at Women's College Hospital in Toronto. She is also expecting a baby in August.