When infertility treatments don’t work

We wanted two kids. Maybe more. But always at least two. That was always the dream.

My husband and I have dealt with infertility for about five years now; it’s something that about 10 percent of women in the US of child bearing age struggle with as well. We’ve tried IVF, and succeeded. It’s how we got our daughter. But then IVF failed to work a second time. We’ve tried intrauterine insemination, a less invasive but still costly process involving hormones, and a doctor putting sperm in your uterus with a catheter. It hasn’t worked, and it’s been deeply heartbreaking.

For a while now I’ve been trying to sort out just how I feel about this entire process, what exactly it means when infertility treatments fail. Is there a better way to get through it? Should I talk to more people? Join one of those Facebook groups? I am incredibly lucky to have a husband that I can lean on and who is 100 percent a partner in all of this. But still, is there a better way to cope than constantly putting myself together with some tape and old glue? And at what point will I know, will we know, that enough is enough and we should stop trying treatments?

For an episode of The Waves on infertility and IVF, I interviewed Pamela Mahoney Tsigdinos, the author of Silent Sorority: A Barren Woman Gets Busy, Angry, Lost and Found as well as a recent article published in the Journal of Marketing Management titled “An IVF Survivor Unravels ‘Fertility’ Industry Narratives.” Her work is devoted to shining light on the personal traumas caused by infertility and reproductive technology failures, which she has experienced herself.

I spoke to Tsigdinos about her advice to people like me, who are trying to figure out just how far to go to get a kid. Our conversation has been condensed and edited for clarity.

Cheyna Roth: In my experience, there’s a huge push to keep going with IVF once you start. It’s so easy for these clinics to just be like, “OK. This didn’t work. We’re just going to schedule for your next round, and your next round, and your next round.” And it becomes so hard to get out of that cycle.

Pamela Mahoney Tsigdinos: It is emotionally traumatizing, and in fact, the diagnosis of infertility is considered one of the top three stressors. When you have a really significant diagnosis like infertility, it’s a form of death. For the very first time you realize your reproductive organs may not operate as they’re supposed to and that may never get fixed. It’s a real stunning achievement. And unfortunately, the way the fertility clinics are set up is, they’re like a conveyor belt. They have a patient appointment right after another, and they compartmentalize a lot.

For them all this information is intuitive, but each patient is hearing this for the first time, and unfortunately there is such a medicalization of this very personal intimate condition that just gets overlooked. It may well be that it’s a level of protection for the staff that work there, because if they get emotionally involved, it is not necessarily easy for anybody. So unfortunately, the patients get the short end of the stick. They are literally handed stacks of papers, release forms. They do a total inspection of your finances to ensure that you have the money to pay for it, and then they push you to the next step. You do not have any time to digest this really traumatizing information.

For people who haven’t read your piece, “An IVF Survivor Unravels ‘Fertility’ Industry Narratives,” can you explain what your personal experience with IVF is?

We agreed to sit down and go through an IVF orientation out of a sense of desperation, because we had done everything else possible. We did go through it—at that point we really started to bond with the idea of ​​becoming parents. We were very successful at egg extraction. They were able to get quite a few from me. The eggs actually fertilized really nicely. They described our embryos as beautiful and said, “Your children will be gorgeous.” So in that sense, you really truly become attached. The bonding goes on at levels that I don’t think most people fully understand. We had multiple embryo transfers, and every single one of the embryo transfers felt like we were in an alpha pregnancy. Because your body begins to behave like it’s pregnant, and so everything about you is telling you you’re pregnant. So when the news comes in the form of a very cold and calculating phone call saying, “This procedure failed. We’ll need you to come in next week and schedule another appointment,” there is zero acknowledgment of the tremendous loss, grief, and sadness, the trauma of feeling like someone just called you to say, “Your child just died.” It’s overwhelming.

When we went through IVF, we had three embryos, and two of them did not work. After the second failed transfer, I felt so confused about how to feel because we knew it was a girl. We’d gotten attached to her. We gave her a nickname. We had the embryo picture up on the wall. And then she’s just not there anymore. It just felt so isolating, and so lonely, and just confusing to go through that.

The thing that gets missed in a lot of this is, all around you the world has no idea what you’re going through. So it can be something as simple as showing up at the grocery store just to pick up a few items, and bumping into a woman who’s pushing her baby in a stroller. And I would have to run out of the grocery store because it was so overwhelming I couldn’t stand it.

I don’t have a ton of memories of our IVF time. I think somehow my brain has kind of blocked out a lot of it. I’ve forgotten quite a bit of it. But I have a very vivid memory a few years ago of being in line in Meijer and seeing this little girl. She was wearing a little tutu, and it was kid dirty. She had these like cowboy boots on. She’s just like bopping along to the music in her head. I just started crying, and I had to move away, and I was just … It’s hard. People look at you and they’re like, “What happened?” It’s so lonely.

I think the thing that really makes it particularly difficult is that everyone continues to act like it’s on you to fix it. “Keep going. Don’t give up.” There is no off-ramp. So you feel the loss and the pain at the same time that people are making the assumption that you’ve failed and that it’s your problem. So again, I struggle to find the words because unless you’ve lived it … I know a number of women around the world who’ve all helped ourselves with sharing stories and making sure that we acknowledge each other and what we’ve lived through , because right now there’s nothing.

We are trying to figure out what our off-ramp is. That’s a good term for it. We have been trying to have a second child and we are uncomfortable with the idea of ​​going through IVF again. I was pregnant for a week, and then I had a miscarriage on one of our IUIs. And I’m curious, as someone who’s been through all of this and has done IVF multiple times, what advice do you have for people who are trying to figure out their off-ramp? And I guess do you regret any of the IVF and other treatment that you did?

First, I want to acknowledge your loss because I know it meant a lot to me when people would give me the support and the validation of knowing that I was going through something difficult. So I want to say I really truly do feel for you. I know that it is probably going to be different for every individual who goes through IVF how far they’re willing to take it. I know that a lot of it comes back to your own emotional, and to some extent, kind of rational understanding of where the pain threshold lives. If you feel that you have a fairly good doctor who understands what your biological challenge is, then certainly you want to have a conversation either with your primary care physician or your OB-GYN to try to just understand, where are the milestones for you? Is it worth one more laparoscopy, or have you really truly identified that there is nothing?

We were in the unexplained category. And then you and your partner, or if you’re doing it on your own, you just have to understand where your limits are. Put some place-markers out there for, “I’m willing to try one more time. Or if this is not going to get me where I want to go, maybe the difficulty of the process itself has overwhelmed to such a degree that I don’t think that I can manage any further.” But everyone arrives at that position for different reasons and on a different timeline. So I can’t be totally prescriptive other than to say it was one of the most agonizing processes my husband and I ever went through.

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