Thirty-Two With the Ovaries of a Forty-Two-Year Old: Renée Long’s Battle with Infertility

“It is hard to believe how little research there actually is related to infertility, considering that one in six people battle infertility. While I don’t call myself a researcher, I do consider myself an academic. I have a degree in computer science and commerce and an MBA. I’ve always loved research so of course when I was diagnosed with infertility, I was immediately on PubMed, trying to find articles and trying to find people with similar numbers to mine. I found there was very little published information available, and I learned mostly from talking to people on the Instagram community.”

Renée always had a feeling she was going to go through infertility even though there was no known reason and no family history of infertility. When Renée’s partner and her started to try to and get pregnant naturally, she went off birth control and her cycle came back like clockwork. She knew when she was ovulating within a two-day window, and there were no other reasons that gave her or her doctor suspicion they were going to struggle. It wasn’t until she had her first ultrasound scan that they discovered Renée was a 32-year-old with ovaries acting like a 42- or 43-year-old. It was the shock of her life when the doctor said how terrible her ovarian reserve was. 

“Because building families is seen as optional, the treatment to build that family with IVF is also viewed as optional. But for me, my desire to be a mom is a need and not a want.”

RUSHED STRAIGHT TO IVF

“We were rushed straight to IVF because my diminished ovarian reserve was so severe. The first month they checked me, I had six antral follicles, which is extremely low for 32 years old and below the average. I thought maybe it was an off month but the next month I had three follicles, and the month after that I only had two follicles. Turns out that the six follicles were pretty good for me!

Starting our fourth month with the fertility clinic, we were supposed to start priming for our first IVF cycle. We thought we had 30 days to learn how to give myself a needle; 30 days to remortgage our house to pay for treatments; and 30 days to figure out how I was going to get time off work. When I went into the clinic for my baseline, I was called up to the counter after my assessment and there was a stack of medications and needles waiting for me. I had 10 antral follicles and I had to start needles that night. 

It was the shock of our lives. I came home from what was supposed to be a standard baseline visit to then tell my partner we had to watch a needle training and sign papers deciding what we would do with our embryo(s) if one of us passed away. We were being forced to make important decisions on the spot, under pressure.  

We also had to pay $20,000 CAD within three days of the appointment and within three days of starting the needles. There was so much stress trying to figure out the financial portion and we had to have another $10,000 CAD ready in our personal bank account to dispense for medications. On that first day, they also needed $4,000 CAD for the medications they sent me home with and I had to just put it on my credit card and hope my credit limit would cover it.

We used intracytoplasmic sperm injection (ICSI) for our first cycle and got five eggs. Out of those five eggs, only one fertilized and we were really disheartened but that one turned into an embryo. We implanted the one embryo and unfortunately, it resulted in a miscarriage. We thought we’d surpassed whatever barrier was keeping us from getting pregnant and the one embryo was all we’d need to finally be pregnant. But we lost the baby at nine weeks, and it was awful.”

YOU CAN’T GIVE UP ON ME…I’VE TRIED LONGER THAN YOU

“After our miscarriage, my body needed to heal and mentally we needed a break. We took a few months off treatment and when we came back, it was terrifying thinking we’d potentially used our only good egg.

“I came home from what was supposed to be a standard baseline visit to then tell my partner we had to watch a needle training and sign papers deciding what we would do with our embryo(s) if one of us passed away.”

We went for a second round of IVF and only got three eggs, none of which fertilized. Our doctor called and told us our IVF success rates were abysmal. That was the actual word she used. She told us we needed to accept that IVF was probably never going to work for us. It had only been six months since I was told I needed to be concerned about my fertility and that was after a year and a half. of my first doctor saying I had to try to get pregnant on my own for 12 months, not worried at all, and waiting months for an appointment at a fertility clinic. Now all the sudden, it felt like I was being told I was completely out of time. It felt like the doctor was ready to give up on me.

I convinced the doctor to let us try one more round of IVF. We’d gotten pregnant after our first IVF cycle, and even though we did miscarry, it was still a win. I wasn’t ready to let go, and our doctor agreed to one more round and then she was cutting me off. If we didn’t have success, she’d only move forward with additional treatment if we used donor eggs.”

FINDING A NEW FERTILITY DOCTOR AND TRYING MINIMAL STIMULATION IVF

“It was too much pressure knowing it was our last cycle and when I started doing research on different clinics, I learned that there were more economical options in Ontario. People say we don’t have private health care in Canada, but we do for infertility!  

During my research, I listened to a discussion with Dr. Garcia from the Markham Fertility Centre, and I felt an instant connection. She talked about how people sometimes go to her after they have been blasted with the highest possible doses of IVF medications and their eggs are fried and those individuals have done better on minimal stimulation IVF (Mini IVF).   

We met with Dr. Garcia and started developing a new plan forward. Dr. Garcia noted that Mini IVF isn’t scientifically proven yet and is still considered experimental, but she had seen it work better for some patients. Our plan for the first IVF cycle with her was to include the lowest possible dose of medications and it ended up being my best cycle. We had four eggs retrieved and two of those eggs fertilized. One embryo made it to day five, we transferred it, and again, we unfortunately miscarried. However, it seemed that we found a formula that worked for my body.”

“Our doctor called and told us our IVF success rates were abysmal…all the sudden, it felt like I was being told I was completely out of time. It felt like the doctor was ready to give up on me.”

WHAT A GOVERNMENT FUNDED CYCLE REALLY COVERS

“I had been on the waitlist for a government funded cycle for a year and half and I finally got the call that it was our turn. Because we were doing Mini IVF, they said that instead of the $7,500 CAD needed upfront, they would only need $4,000 CAD for the funded cycle. This is an example of how a funded cycle truly only covers half the cost and that doesn’t include coverage of your medications, genetic testing, or the cost of freezing your embryo(s).

There are also rules with the funded cycle that don’t make sense. For instance, you’re allowed one cancellation but if you cancel two cycles, you lose the government funding forever and receive nothing. So, on my funded cycle I ended up growing one follicle, which was different from my previous cycles with Dr. Garcia. Had I been paying for this round out of pocket, I would have cancelled the cycle, but I didn’t want to lose my one chance for financial help. Dr. Garcia thought it was too risky to cancel, not knowing what could happen in my next cycle.

We went forward with that fourth retrieval and the one egg didn’t fertilize.”

TRYING A DOUBLE STIMULATION CYCLE

“After the fourth retrieval, I brought a new idea to Dr. Garcia and asked about a double stimulation cycle (DuoStim) where we would do two retrievals in one cycle, within a single month. Dr. Garcia noted a 50% chance that it would work because for some individuals, their bodies don’t respond to the medications in that particular phase of the cycle, which can result in no follicular growth.

For the first half of the cycle, we had a great result and retrieved four eggs. Out of those four, two fertilized and both made it to day five embryos. We sent both embryos off for genetic testing and one came back genetically normal, which we froze for a later cycle. We tried another DuoStim cycle, but I unfortunately ovulated before retrieval and my doctor thought my body was getting used to the medications. I had done six cycles in a row and two of those months were two retrievals in the same month. We decided we were done with IVF and would walk away with our one frozen embryo.

“I had done six cycles in a row and two of those months were two retrievals in the same month. We decided we were done with IVF and would walk away with our one frozen embryo.”

I’m now focusing on my mental health, happiness, and the surgery that I recently had done. We’re going to do reproductive immunology testing, which is considered experimental, but we want to put our best shot forward with the one embryo that we spent over $100,000 CAD to create.”

THE VALUE OF COMMUNITY

“It was during my first miscarriage I started my Instagram account and was able to start connecting with other people going through infertility. That connection changed my whole mindset around what we were experiencing and all the sudden I felt safe to talk to others and not keep it a secret. Sometimes, I just want to talk about hard this journey is for five minutes and I’m not looking for advice. That’s the support this community can give me.”

ADVOCATING FOR WORKPLACE SUPPORT

“Because people aren’t talking about infertility, we don’t have much advancement in the public funding space and the policy space, to include workplace benefits. It took a lot of courage and time before I was able to go to my boss and explain why I was asking for last minute time off and was going to need to ask for more last-minute time off after starting IVF. When I did open to my boss, he was amazingly supportive, and I still call him one of my biggest supporters. I don’t think I could have done this many IVF cycles had I not had his support and wasn’t able to build such a safe space within my workplace.  

We’re now using our conversations and the support he’s been able to provide to advocate for changes to the workplace that can better support others going through this in future. I’m working to advocate for better funding at the provincial government level here in my province of Ontario, Canada. Currently, in Ontario the government covers one cycle per person that really ends up being approximately half of one cycle. When I first put my name on the waitlist for this support, it was a two year wait and my doctor said I probably wouldn’t be able to do IVF in two years. That long of wait and the limited coverage made it feel like we didn’t have a choice but to pay out of pocket.  

“If I knew for sure that I could spend $100, 000 CAD, suffer for four years, take hundreds of needles, go through six egg retrieval procedures, endure countless 3am drives to Toronto for an 8am ultrasound, all to have a guaranteed baby at the end, I’d have a different ability to cope with everything.”

We had 11 IVF attempts, with only six rounds making it to retrieval. That was 11 months where we did all the needles, all the side effects, all the tears, all the upfront payments, all the drives to and from Toronto for our monitoring visits, which is four hours from our house, all the gas, all the hotels, and all the stress wondering if it was going to work. Even though we didn’t make it to retrieval for all 11 attempts, each of those cycles counted for something and each of those cycles impacted my personal and professional life.”

THE UNKNOWN OF INFERTILITY IS TRAUMATIC

“Going through infertility and treatments is traumatic because no one knows how it is going to end. If I knew for sure that I could spend $100, 000 CAD, suffer for four years, take hundreds of needles, go through six egg retrieval procedures, endure countless 3am drives to Toronto for an 8am ultrasound, all to have a guaranteed baby at the end, I’d have a different ability to cope with everything. The unknown of infertility is unreal.  

I remember being stressed by the first needle and having to mix the medicine. I was trained by the clinic for five minutes and next thing you know, you’re at home with the needle and it is high pressure. You must do the shot within a specific time frame and you, or your partner can’t chicken out because it must be done. By the third night, the needles were easier, not as stressful, and our focus turned to the ultrasound results to see how many follicles were growing to make for a successful cycle.

After the first one miscarriage, we thought maybe it was bad luck. When it happened the second time, that’s when we really started to worry that there was a problem. The emotional stress I felt was hard to explain to others. There are other major griefs cycles, that often get better with time but with infertility, you never get that time to recover or to reset. You feel grief and start to feel better, when grief hits again and that cycle doesn’t have an end date. It can draw out for years and for me, it’s been four years of battling the grief that comes along with infertility.”

“It’s not jealousy that we feel at a baby shower…it’s an unmet need that is tied to deep grief.” 

INFERTILE AND HOLDING GRIEF

“There’s a stigma about women going through infertility and if we cry at a baby shower, people think it’s because we’re jealous. I’ve struggled with this for a long time because I don’t feel jealousy. I tear up at a baby shower because it’s a reminder of my grief that I try not to think about. I focus on being a productive, happy person as much as I can through infertility but occasionally, there are triggers that remind me of the thing I’m trying to suppress for my mental health. It’s like being the thirstiest person in a room and everyone’s talking about how amazing the water is and you haven’t had a drink of water in a week.

It’s not jealousy that we feel at a baby shower…it’s an unmet need that is tied to deep grief.” 

NEED FOR MORE FERTILITY POLICY, AWARENESS, AND ACCESS

“There’s so much more we can do as a society to help people going through infertility. There is the perception that IVF is an elective medical treatment and it’s handled differently than most other medical treatments available. Because building families is seen as optional, the treatment to build that family with IVF is also viewed as optional. But for me, my desire to be a mom is a need and not a want.

There is a lack of public awareness, policy, and funding and it’s motivated me to become active in infertility advocacy work. Talking about infertility and IVF has become a normalized part of my life and talking about it publicly allows me the potential to help alleviate the shock for the next person who walks the path of infertility.

There is also a lack of physical access to fertility clinics. We don’t have an IVF clinic here in northern Ontario and it’s a relatively big city. I have had to travel so much for treatment, waking up at 3am to drive four hours one way to my clinic in Toronto. You never know when there is going to be bad weather, traffic, construction, etc. and to avoid taking last minute days off work, I would sometime work my eight-hour shift from a coffee shop near my clinic and then drive home another four hours.”

FOR THOSE WALKING THE PATH OF INFERTILITY  

“It’s important to build a support system…You need people because this journey is incredibly hard.”

“It’s important to build a support system and find your person who’s already been through infertility, because you are going to have a million questions. Even if you’re just doing monitoring or taking Letrozole, it’s so helpful to have someone you can turn to for information and advice. While family is well meaning and well intentioned, they often have not been through infertility and don’t always say the best things to someone who is in such a deep space of grief.   

Build your community…I wish I had done it earlier. It doesn’t mean you have to start a public account on Instagram. You can start a private account, follow 50 people, and maybe connect with 10 of them. You need people though because this journey is incredibly hard.”

You can continue to follow Renée’s journey, see how she continues to support others battling infertility, and advocate for improved infertility-related policies on Instagram @the.baby.plan.