Infertility Out Loud
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S, 40

2/22/2017

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​How did you first know you were dealing with infertility?

Early on, my husband and I got pregnant very quickly, but it turned into a blighted ovum. So, I had to have a D&C. We were 34 years old. After that, I started having pain every month that I had never had before. I saw several different OB/GYNs before I moved on to an infertility specialist. Whenever I raised my concerns that things didn't seem right, I was told, "You got pregnant once, you'll get pregnant again." Your typical, "Don't worry," pat on the head sort of a thing. I felt a little crazy like I was just being obsessive for no reason. Then, after about a year of trying to find an answer, I did find out that I had endometriosis. That started the long journey towards trying to have a child through IVF. First, I had surgery for endometriosis. Then, several IUIs. I was traveling to the Midwest a lot for work, so I started seeing a physician in Chicago and trying to do a lot of it long distance. Which was quite stressful. I then moved on to IVF and had several cycles that didn’t even make it to egg retrieval. The ones that did, I had a chemical pregnancy on one and the other I woke up to find out that no eggs were retrieved. It was just a constant stream of bad news. The issue really came down to the endometriosis and how it had affected my body. I had very low AMH and over the years my FSH started going up. At some point it became very clear that, if this is going to happen, I'm going to have to do donor eggs. It was total of about five years by the time we were pregnant with our son through donor eggs. And he's just everything I could have ever hoped for. It was a hard process getting to the place of first accepting my own infertility, in addition to the financial burden and everything else that goes along with it. Then, having to accept that I was going to have to go a route that I would have never expected. When I was growing up, have a child via egg donation was not something that I was aware was even a possibility. So there was a lot of grieving and learning during this journey.
​

Did you try anything beyond medical interventions?

I went to acupuncture for years. She was a huge support through the process. A lovely woman and it was helpful in gaining a sense of calm. And to feel like I was doing something when I didn't have control over the medical process. It was an enjoyable experience. I also took many, many supplements. Drank a lot of wheat grass. I was willing to (and did!) try everything I came across in hopes of having a child.

What about the medical process? What was that like?

That was tough. I felt such a lack of control and the process felt like I was on some type of assembly line. Then add to that the financial implications of it. Insurance didn't cover any of this. Which meant that my professional life was suddenly being dictated by what would make me the most money vs. what would be the most rewarding. The medical process was an overwhelming time for me. So much of your life feels like it's out of your control anyways when you're going through infertility, and then you feel like you have these medical professionals that hold all the keys to you getting what you so desperately want yet you have limited time with them and they are so busy that you question if they really are paying attention to your situation and whether or not you are getting the best care possible. I did have a really positive experience with my doctor in Chicago, even though I ultimately wasn’t able to continue working her long distance. When we first sat down, she listened to my story, and then she got out a piece of paper and started drawing. She said, "These are all the paths to becoming a mom." It was so meaningful to me because up to that point, every conversation with medical professionals was strictly about the next step. The next test. The next procedure. She took the time to acknowledge my heart’s desire and showed me the big picture – I could become a mom one way or another. Even if it wasn’t the way I was originally planning. And then we got down to the next step.

What was helpful during this time?

The biggest help was having a group of women that I could share and go through the journey with. When you go through the medical process there are so many tests, so many acronyms that you have to keep track of. Hormone levels. Follicle size. Uterine lining thickness. Unless I was talking with someone going through or who had gone through the same thing, I just spent a lot of time explaining stuff that went over people's head. You’d watch their eyes gloss over from information overload and it only added to the feeling of loneliness. It was so very helpful to have a group of people that you could say, "So, my estrogen came back at this today," and they knew exactly what that meant and they knew how important it was to me and how it impacted my next step. Then there’s, of course, the emotional aspect of it as well, - I could vent and share my frustrations with women who understood. That was a huge help. Also, having a medical professional that knew how important my end goal was. To help me step back, understand the process better and give me the big picture. I think that's a piece that's just sadly missing a lot of the time.

What was the hardest part for you during that time?

Watching life go on with everybody else. No one in my current circle of friends and family had gone through or was going through what I was experiencing. There were all kinds of births that were happening during this time and you watch those kids grow up over time and you think, "Any minute now I'm going to have a child that's going to add to this picture." Then the calendar pages fly off like in a movie. That was probably the toughest piece, because I think, for my husband and me, there was always a feeling of, "Success is going to be right around the corner." You don't prepare yourself for how long of a journey it ends up being.

How did he deal with the process?

At the beginning it was, "Next time, next time. No worries. We're okay. We're young." Then, as the time drug on, it became more of a reality of how hard it was going to be. For him the hardest part, I think, was not being able to do anything about it. Eventually, my doctor in Chicago said, "You know, your husband hasn't really been run through a lot of tests. You have and we know you've got some stuff, but we need to see what is on his end." I was dreading sharing this with him. I thought for sure he was going to say, "Ugh, I don't want to go through all of this." But he was actually thrilled because he finally felt involved!  Until then, he was watching it be done to me. It was a very frustrating experience because there was nothing he could actually “do”.

What was the least helpful thing someone said to you?

The least helpful was, "You need to relax." That phrase, in some variation or another, gets thrown around a lot. It’s about as helpful as telling someone who is upset to calm down. Yes, managing stress and relaxing is a good thing to practice. But, no, that will not in and of itself result in a baby. Going on vacation, or forgetting about getting pregnant for a while might be good things to do at some point in the journey, but it’s not THE fix. I take a lot of issue whenever I hear someone say, "If you would just relax. If you would just learn to cope with it better." That doesn't mean that you're going to have the end result that you want. It's not keeping you from getting pregnant, the fact that you're stressed out. And it makes you feel like it’s one more thing you are failing at!

What's the most helpful or supportive thing someone said to you or did for you?

I had so many wonderful people on the journey. I think probably the most helpful was hearing that when the time came, I was going to make a wonderful mom. I think that helped to ground me and remind me why I was doing this. Because sometimes I just felt like I was going through the motions and I stopped even expecting something good to come out of all of the interventions. After a while it just felt like I was attending doctor appointments and doing all these things just for the hell of it. To be able to hear that my goal was a worthy one and that I would make a good mom would help remind me of the why I was doing all of this.

What would you like others to know about your experience?

That even if things don't go the way that you dreamed that they would, the love that you experience makes it all worth it. It doesn't have to be that perfect route. In fact, the imperfect route makes it infinitely more meaningful.

What advice would you give to someone about to begin the process of infertility intervention?
​

Prepare yourself that the journey could be a longer one than you expect. You can easily get to that place where you think, "Well this will be the magic bullet." You're living life from one treatment to the next and you never fully have time to grieve something not working because you're jumping right back into the next cycle. Then you find that time has passed. Start with the clear understanding that it could be a lot of interventions until you get to where you need to be, and prepare for that marathon versus a sprint. You want to get your support system in place and definitely learn from other people’s stories and journeys. Begin with the end in mind, so to speak. If you want to be a mom, figure out why you want to be a mom and that will help you to keep going and to make the right choices. ​
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