We wanted two children. Maybe more. But always at least two. It has always been the dream.
My husband and I have been dealing with infertility for about five years now. it is something that about 10 percent women in the United States of childbearing age also struggle with it. We tried IVF and succeeded. That’s how we got our daughter. But then IVF didn’t work a second time. We tried intrauterine insemination, a less invasive but still expensive process involving hormones, and a doctor injecting sperm into your uterus with a catheter. It didn’t work and it was deeply heartbreaking.
For a while I have been trying to figure out how I feel about this whole process, what exactly it means when infertility treatments fail. Is there a better way out? Should I talk to more people? Join one of these Facebook groups? I am incredibly lucky to have a husband I can lean on and who is a 100% partner in all of this. But still, is there a better way to cope than constantly putting myself back together with tape and old glue? And when will we know, will we know that enough is enough and that we have to stop trying treatments?
For an episode of The Waves on infertility and IVF, I interviewed Pamela Mahoney Tsigdinos, the author of Silent Sorority: Barren Woman Becomes Busy, Angry, Lost and Found as well as a recent article published in the Journal of Marketing Management entitled “IVF Survivor Unveils ‘Fertility’ Industry Tales.” Her work is dedicated to shedding light on the personal trauma caused by infertility and reproductive technology failures, which she herself has experienced.
I spoke to Tsigdinos about his advice to people like me who are trying to figure out how far to go to have a child. Our conversation has been condensed and edited for clarity.
Cheyna Roth: In my experience, there’s tremendous pressure to continue with IVF once you’ve started. It’s so easy for these clinics to say, “OK. It did not work. We’re just going to plan your next trick, and your next trick, and your next trick. And it becomes so difficult to break out of this cycle.
Pamela Mahoney Tsigdinos: It’s emotionally traumatic, and in fact, the diagnosis of infertility is considered one of the top three stressors. When you have a really significant diagnosis like infertility, that’s a form of death. For the very first time, you realize that your reproductive organs may not be working the way they’re supposed to, and it may never be fixed. It is a truly breathtaking achievement. And unfortunately, the way fertility clinics are run is like a treadmill. They have one patient appointment after another, and they compartmentalize a lot.
For them, all this information is intuitive, but every patient hears this for the first time, and unfortunately, there is such a medicalization of this very personal intimate condition that goes unnoticed. It may well be a level of protection for the staff working there, because if they get emotionally involved, it’s not necessarily easy for anyone. So, unfortunately, patients have the short end of the stick. They are literally handed stacks of papers, release forms. They do a total inspection of your finances to make sure you have the money to pay it, then they push you to the next step. You don’t have time to digest this truly traumatic information.
For those who haven’t read your article, “IVF Survivor Exposes the ‘Fertility’ Industry’s Tales”, can you explain your personal experience with IVF?
We agreed to sit down and go through an IVF orientation out of desperation, as we had done everything else we could. We went through that – at that point we really started to bond with the idea of becoming parents. We had great success extracting the eggs. They managed to get several from me. The eggs actually fertilized very well. They described our embryos as beautiful and said, “Your children will be beautiful. So in that sense, you become really really attached. The bonding continues on levels that I don’t think most people fully understand. We had several embryo transfers, and each of the embryo transfers felt like an alpha pregnancy. Because your body starts acting like it’s pregnant, and so everything about you tells you you’re pregnant. So when the news comes in the form of a very cold and calculating phone call saying, “This procedure has failed. We will need you to come next week and set up another appointment”, there is no acknowledgment of the enormous loss, of the grief and sadness, of the trauma of feeling like someone had just called you to say: “Your child has just died. It’s overwhelming.
When we went through IVF, we had three embryos, and two of them didn’t work. After the second failed transfer, I felt so confused about how I felt because we knew it was a girl. We had become attached to her. We gave him a nickname. We had the picture of the embryo on the wall. And then she’s gone. It was just so isolating, and so lonely, and just confusing to walk through.
The thing that goes unnoticed in a lot of things is that 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 buy a few items and running into a woman pushing her baby in a stroller. And I had to run out of the grocery store because it was so overwhelming I couldn’t take it.
I don’t have a ton of memories of our IVF period. I think somehow my brain kind of blocked out a lot of it. I forgot quite a few. But I have a very vivid memory a few years ago of standing in line at Meijer and seeing this little girl. She was wearing a little tutu, and it was dirty. She had it like cowboy boots. She’s just like skipping along to the music in her head. I just started crying, and I had to pull away, and I was just… It’s hard. People are looking at you and they’re like, “What happened? It’s so lonely.
I think what really makes it particularly difficult is that everyone keeps acting like it’s up to you to fix it. “Keep going. Don’t give up. There’s no exit ramp. So you feel the loss and the pain at the same time people assume you’ve failed and that’s your problem. So again , I struggle to find the words because unless you have experienced it… I know a number of women around the world who have all helped each other share stories and make sure we recognize each other and what we have experienced, because for the moment there is nothing.
We’re trying to figure out what our exit ramp is. That’s a good term for that. We tried to have a second child and we are uncomfortable with the idea of redoing IVF. I was pregnant for a week and then miscarried on one of our IUIs. And I’m curious, as someone who’s been through all of this and done IVF multiple times, what advice do you have for people trying to figure out their exit? And I take it you regret IVF and the other treatments you went through?
First of all, I want to acknowledge your loss because I know it meant a lot to me when people gave me the support and validation of knowing that I was going through something difficult. So I mean I really really feel for you. I know it will probably be different for each person who goes through IVF how far they are willing to go. I know a lot of it comes down to your own emotional and, to some extent, rational understanding of where the pain threshold is. If you think you have a good enough doctor who understands what your biological challenge is, then you definitely want to have a conversation with your primary care doctor or OB-GYN to try to figure out, where are the milestones for you? Is it worth another laparoscopy, or have you really really identified that there’s nothing?
We were in the unexplained category. And then you and your partner, or if you’re doing it alone, you just have to understand where your limits are. Put some markers there for, “I’m ready to try one more time.” Or if this isn’t going to get me where I want to go, maybe the difficulty of the process itself has overwhelmed me to such a degree that I don’t think I can make it any further. But everyone gets to 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 nerve-wracking processes my husband and I have ever been through.