Doctor, Can’t You Fix It?

My story and experience of infertility treatment.

*Disclaimer: I am not a doctor and this is not medical advice just me telling my husband and I’s story of infertility treatment.

Our Treatment Story

After about 7 months of trying to conceive on our own, I met with my family Doctor. I asked if there was anything I should be doing in order to help with the process, and asked at what point we should be concerned about infertility.

At this point I wasn’t worried, just trying to be proactive. She began to explain that because of our age (being 24 & 27), it wasn’t a bad idea to start the referral process as it could take up to 6 months or more to see the fertility specialist, but that in all likelihood we would get pregnant before the referral ever went through.

Well that was the first disappointment of many. The months went by as we moved closer to our first appointment with the infertility clinic and throughout these months we were met with negative test after negative test. Eventually that first appointment came and went. I remember being in shock that we had made it this far without even one slightly positive test, could we really be infertile?

After our first consultation, we began a course of tests to help determine what might be going wrong. I won’t go into detail about the process for testing, you can google all of the medical information about the typical tests for infertility diagnosis, but I can say they were invasive, intrusive, and painful. I was assured they would just be “somewhat uncomfortable” but I can say for me at least they were outright painful. You can get through it (if you are looking ahead to potential testing) but they are not fun at all. I recommend Tylenol, heating pads, comfortable clothes (I always wore loose dresses and leggings), and plan to relax afterwards. The diagnostic and testing process took about 2 months with various different tests done on both of us.

After all of the testing was completed, my husband and I were diagnosed with Unexplained Infertility. Yes, google it, it is a real diagnosis. It’s almost an oxymoron really, being diagnosed with the unknown.

We want to let you know that we officially do not know what is wrong, possibly nothing is wrong at all. Except of course…something is obviously wrong”.

I didn’t even know it was possible to be diagnosed with something unexplained, didn’t we know more about this by now?

After our diagnosis, we were given the option of starting treatment. There were 2 options for treatment: Option 1, Intra-Uterine Insemination with Super-Ovulation (IUI), and Option 2, In Vitro Fertilization (IVF). We chose IUI, which is what most people start with.

We did 4 rounds of IUI; 2 failed rounds that were cancelled part way through the cycle, and 2 successful (complete) rounds that did not result in pregnancy. Who knew you could succeed in fertility treatments and still end up not pregnant?

Each IUI cycle is a full month process and then 1 month off in between to let your body recover. So in total to do 4 rounds of treatment is a minimum of 8 months. We took some longer breaks along the way, but it was still an exhausting process.

For each round of treatment, the woman takes hormones to help stimulate follicle (egg) growth as well as to increase the number of eggs released. In a typical cycle, a woman usually ovulates a single follicle however in fertility treatment multiple eggs are matured and released to increase the likelihood of pregnancy. In IUI treatments, the goal is for 3-4 mature eggs (at least at our clinic). The medications are taken by injections which you do yourself at home, another skill I never thought I would need to master but I guess it might come in handy in the future? So every round we would set up a needle station in the kitchen: alcohol swabs, sharps container, needle, hand sanitizer, and a candy to eat once the injection was over – a little reward to help with motivation (Jolly Ranchers were my choice).

We took a photo together for each round of treatment hoping that this would be the first photo of Mom and Dad.

And it was after those 4 rounds that we decided to end our treatments. We were in active treatment for something like a year including diagnosis and then 4 rounds of IUI. We could have kept going, the clinic would have allowed us to do 4 full rounds which would have meant 2 additional rounds than what we did. But the rounds we did, 2 cancelled partway and 2 full rounds, were so difficult that we knew we couldn’t do any more.

We knew we couldn’t take more early morning appointments and stress filled medication routines. I couldn’t take more of the side effects: nausea, anxiety, pelvic and ovary pain, back pain, hair loss, bloating, headaches and dizziness to name a few. I didn’t want the disruption to our life anymore. And we couldn’t take going through all of that only to be disappointed with another negative pregnancy test.

I should mention this was made even harder by the pandemic. I did every single procedure except the final one by myself as my partner was not allowed in. This made the procedures even more difficult to go through especially the painful ones. It was an incredibly lonely experience.

My Thoughts on Our Fertility Treatment Experiences

I’ll be the first to admit that I definitely thought prior to going through treatment that fertility treatment meant basically a guaranteed baby. When I had briefly encountered fertility treatments – most often portrayed as Invitro-fertilization (IVF) – I knew it was difficult but I figured that it worked most of the time.

Well, surprise, that is not the case at all. In fact in many treatments you are more likely to not get pregnant than to get pregnant, even IVF only has a 50% success rate. And that’s if you are even able to pursue IVF as a treatment option. There are many different complications that can happen in treatment, even if you have no diagnosed problems.

I think the many outcomes with fertility treatments are not well explained, especially what the statistics really mean. 1 in 8 couples, 12.5% of couples, are infertile. Some sources report as high as 1 in 6, which would be 16%. Take time to think about 6 couples you know, chances are 1 of those 6 are infertile. 50% of IVF transfers, or half, do not result in pregnancy. Rates of miscarriage are reported at 10-20% (depending on what stage of pregnancy you are looking at and what is considered as miscarriage). It’s all a lot less certain than how it is often portrayed, even by medical professionals.

In our case, each round of treatment, only had about a 25% chance of success and we were in the highest category because of our age and no obvious problems. That’s a 1 in 4 chance of getting pregnant in each round of treatment.

There is also little discussion about costs and how inaccessible these treatments are for many, many people. Not only are the medications extremely expensive (and not always covered by insurance) but you have to take significant time off work in order to go to all of the appointments and there is no compensation for that.

I think doctors are hesitant to be up front with the statistics as it is not motivating for patients but I think that patients need to know what they are getting into and set their expectations accordingly.

I did feel like throughout the process of treatment there is a lot of pressure to keep going. Doctors will push you to keep going because of course “you want to have a baby”. There is little sympathy for the intensity of the treatments, the physical discomfort in going through them and how it might impact your mental health. I was once promised by a Doctor after a failed cycle that “one day you will have a baby in you arms” as I was a “perfect candidate for treatment”. The doctors and nurses could not really understand and were confused as to why we would not want to pursue more treatments when we decided to stop after our 4th IUI.

Why we did not pursue IVF

I feel obligated to explain why we did not, and won’t be, pursuing IVF as that would be the next step in treatment. After everything, the stress, the medications, the injections, the procedures, I knew that IVF was not for us. I knew I could not put myself through another year of treatments, that are even more intensive and painful. This in addition to an average 1 year wait list to even start treatment, spending $10-15,000 (in Canada), all for a 50% chance. A coin toss for a baby. And that’s if you don’t end up with complications that mean you can’t continue or have to restart the whole process over.

The waiting, the needles, and all the potential for things to go wrong it just wasn’t something I was willing to put myself through, and my husband didn’t want to watch me go through it either. And so, together, we drew our line in the sand. That was that, we we’re not going to do IVF. Even if that meant we would never conceive and never hold a baby in our arms.

Conclusions

In the end, I am satisfied with our decision to stop treatment, but I am also glad that we did try treatment. It doesn’t mean I want a child any less, but I know that more treatment wasn’t necessarily going to get us there and was going to continue to cause us a lot of pain and stress. Not to mention more costs moving forward. But I can also tell myself I tried which brings me some strange sense of comfort and closure.

Ultimately, staying in treatment felt like putting our whole life on hold and I wasn’t willing to do that anymore, we are more than an infertility diagnosis, our life is about more than this. Ultimately, our life is about more than having children if it comes down to that.

I won’t sugar coat it, fertility treatments were some of the hardest things I have ever had to go through in my life. They were painful, stressful, lonely, deeply isolating, and profoundly sad. I would never want to do them again and I wouldn’t wish them on anyone.

I want others to know that there is no shame in saying no to treatments. It is your journey, your choice, you are in control of when is enough. You are not alone, you are not the only woman (or couple, or man) to say “enough is enough, I’m done”. And making that decision is between you and your partner only. Sometimes saying “no” is the bravest thing you can do. Don’t be afraid to advocate for yourself. And your reason for not pursuing treatment is valid whether that is for financial reasons, mental health, physical health, or any other reason.

I also want people to know that you can do all of the treatment correctly, do everything right, and still not get pregnant. In the end, treatment didn’t work for us. We didn’t get our miracle baby that way.

I don’t think enough people talk about all the times treatment doesn’t work. And I think it’s only fair that people fully understand what they are getting themselves into. We’re 3 years in, and we have never been pregnant and we may never be.

Write soon,

Hannah B.L.

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