Guest Writer Wednesday: Stephanie says, "Team up!"

My guest writer and great friend, Stephanie, shares her story about her unexplained secondary infertility resulting in infertility treatments (IUI) and multiple miscarriages. Let's warmly welcome Stephanie to Embrace Your Unicorn!

 

I’m Stephanie, and I have unexplained secondary infertility.

That’s an actual diagnosis for around 25% of those who have issues getting pregnant and staying pregnant--unexplained infertility, aka “We don’t know what’s happening.” It is just another bullet point on my long list of grievances for the current state of women’s healthcare, but I will get back to that. “Secondary” is because I managed to have a living daughter, though there were losses even before her. Now, secondary infertility, that is where everyone really starts to get confused (“Well, you have had a baby before! We know you can get pregnant!”). As of today, I have been pregnant 8 times. I am 1 for 8.

Artist Fríða Dís Gudmundsdóttir displays her work, "Próf/Tests" (translation: Exhibition/Tests) in Ljósanótt, Iceland. This exhibit depicts Fríða's journey through infertility. It took her and her husband 56 months and 56 negative pregnancy tests (i.e., one pink line) before becoming pregnant.  http://www.visir.is/g/2017170909511

Artist Fríða Dís Gudmundsdóttir displays her work, "Próf/Tests" (translation: Exhibition/Tests) in Ljósanótt, Iceland. This exhibit depicts Fríða's journey through infertility. It took her and her husband 56 months and 56 negative pregnancy tests (i.e., one pink line) before becoming pregnant.

http://www.visir.is/g/2017170909511

My good friend, Kristen, asked me to write a guest blog post. I was not sure that I could. After 4+ years of being completely engrossed in the world of fertility, I am not sure I know how to even focus my writing. How do I narrow it down so that it isn’t never-ending rambling? Do I talk about the losses? My grief process? My support groups? Resources I recommend? The actual fertility procedures and drugs? What doctors suspect is going on with me? The crazy things they have said to me? My journey through alternative and supportive treatments like acupuncture, fertility yoga, and the ketogenic diet?  Or, what it feels like to have every waking moment consumed by trying to get and stay pregnant? I should have started writing from the onset. It would have been useful for future research about how infertility can fundamentally change one’s personality.  

The added layer on top of that is my deep anger from current political events.  Not only do I have to struggle with the daily burden of infertility, but I get to do it under the national spotlight, with people calling me a “baby-killer” when I try to share that 1 in 4 pregnancies do not go well and that abortion is there to help women. Given the recent retirement of Supreme Court Justice Kennedy, there is the added fear that I may soon live in a country where my fellow Americans have decided for me that I don’t deserve to have any more children, that is acceptable to waste my time waiting around for a terminal fetus to die inside of me, or that it is okay to risk my life to sepsis. I wasn’t sure I could write about my experiences without treating readers as hostile and just yelling at them.  

I loved Kristen’s upbeat posts about embracing her body. I am not nearly as inspiring. I am tired and cynical. In the past, I did feel betrayed by my body’s inability to do what it was supposed to do. As I have learned more about fertility and have gone deeper into the process, I have embraced my body and I love it. It has taught me more about taking care of myself in a meaningful, healthy way.

While I have embraced my body and the lessons it has given me, I now thoroughly reject the way society treats it.

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"I now thoroughly reject the way society treats it (my body)."

Society was the one telling me that I should be angry with my body, when in fact, it is the one who shouldn’t be trying to shove it into the box it created as the “norm.”  It was the one saying that I should not be covered by insurance. It was the one that was woefully ignorant at a basic level (Women shouldn’t have to work their way through primary care doctors, to OBGYNs, to then a reproductive endocrinologist to be told, “Actually, TSH should be below 2.5 for fertility.” Why is that considered specialty information? ).

My list of specific grievances is long and includes other offences such when I was given no information of what to expect as I went through my first miscarriage.

I tried to go to work.

While miscarrying.

No one told me how awful it was going to be.

I look back at that naive Stephanie, and I just want to hug her and give her the information that I now have after fighting so hard for it every step of the way. Society is the one who failed me.

My body and I have now teamed up. It is us against the world--against insurance companies, uninformed medical practitioners, politicians, male bias, lack of women’s reproductive research, outdated nutritional information, internet trolls, and an ignorant populace. No one knows my body better than me, and no one cares about it more than I do. I am now a super advocate for all things “Team Stephanie.”

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Us against the world

"It is us against the world--against insurance companies, uninformed medical practitioners, politicians, male bias, lack of women’s reproductive research, outdated nutritional information, internet trolls, and an ignorant populace."

Team Stephanie’s fertility journey is a slow one. I have been systematically working my way up the specialty ladder and broadening out to supportive, alternative treatments. It involves at least over a thousand hours of study through fertility books, articles, internet sleuthing, consultations with professionals, and double checking information and brainstorming with support group members. I often think about how this energy could have been put into perfecting my skills in my profession, but instead I have the second job of trying to get pregnant, regularly pulling me away for long lunch breaks to attend appointments on cycle days that are non-negotiable (I am spending a chunk of my 4th of July in the clinic this year).

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We are going into our last IUI cycle this month. For the fertility nerds out there, we have been doing letrozole CD3 to CD7 for ovarian stimulation, with CD12 monitoring, an HCG trigger shot, next day IUI, and then progesterone. I have also been taking levothyroxine for subclinical hypothyroidism and eating ketogenic to promote hormone balance and stable blood sugar levels. I am currently working on going dairy-free as well. I have played around with supplements like Ubiquinol. I have asked my doctor to consider Metformin, but honestly, I have already started taking it due to having some leftover pills from before I was ketogenic. At our next appointment, I’ll ask about baby aspirin, though my tests came back negative for Factor V Leiden, perhaps I have other hidden thrombophilia issues. Checking for MTHFR and exploring autoimmune influences (my psoriasis have been in a flare up since my daughter’s birth) are on my list of questions, as well. My HSG and pelvic ultrasounds showed that everything is fine structurally. My bloodwork for FSH, estradiol, AMH, etc. are all typical. Prior to intervention, I had regular cycles with clear OPKs and temp shifts, so ovulation appeared to be fine. I am just in that large, mysterious “unexplained infertility” club.  

After this cycle, we meet with the doctor again to discuss next steps. I am assuming that she will allow us to keep trying IUIs, but that she strongly will be recommending IVF if we can make it happen financially. I have high hopes for IVF given that you can physically see and test viability as the cells become a blastocyst. We can choose a healthy blastocyst instead of crossing our fingers every month that a healthy egg was released and met up with a healthy sperm. I am getting older, and that is taking years to happen, one agonizing month at a time.

We have always wanted three children. I am already mourning the loss of the third child we always thought we would have. I am not quite ready to mourn the second.  

So much of me is different now, or not how I ever pictured my life to go.  I have no idea what it is like to be excited about those pink lines on a positive pregnancy test. Instead, I start making plans for taking off work to make sure that I can miscarry at home.

I am quickly annoyed and angered anytime someone tries to act as the moral authority on fertility and abortion.

I dread surprise in-person pregnancy announcements (If you have someone in your life struggling, and you probably do given that 1 in 8 couples suffer from infertility, send them a text message or email before an in-person announcement. We are definitely happy for you, but there are some initial emotions that we have to work through privately first).

Little cuts of “When are you having more kids?” or “You just need to relax and it will happen” and “Try having sex every other day around ovulation” (That one was from an OBGYN even after I had shared about trying for one year and having three consecutive losses--the criteria for infertility and unlocking the door to get help) add up day after day, making my patience thinner for the next person who makes the same oblivious comment.

I am also more superstitious now that science does not have all the answers for me. I search for the knowledge that women continue to pass onto each other, now in the form of fertility message boards--discussing maca root, evening primrose oil, Vitex, and other supplements. I try to tempt the universe--How about I buy a whole new wardrobe? Join a wine club? Book an exotic vacation? Will you let me get pregnant then, universe? I dare you to ruin my plans…no seriously, please ruin them.

I am recognizing that I do not have a hopeful tone to my writing, but I have embraced those emotions along with my body. Just like I wanted to share all the information I now have to the past, naive Stephanie, the information I now hold may help someone else shorten their fertility journey so that they can still find excitement in a positive pregnancy test. Or, at least I can help someone understand that this is not their fault. We live in a world where we have sent people to space, created mind-controlled prosthetic limbs, developed life-saving vaccines, and we still do not have infertility completely figured out? Is it just a burden us women need to bear?

I don’t think so.

Love that body of yours that they say is broken and unworthy of “fixing” with insurance coverage. It is not your body’s fault. Your body deserves more than what the world is currently giving it. “Unexplained infertility” should be “Actually you have the MTHFR gene, switch from folic acid to folate” or “insert future diagnosis and solution here.” Befriend your body. Do not blame it for telling you something that society has not bothered to interpret, yet. 

Team up.

-Stephanie

*I am four years into my fertility journey, so there is no way to possibly share everything all at once. This is only a short summary to all things Team Stephanie. I would be honored to elaborate on other topics that the community finds beneficial.