As I read these words, written by a fellow Endo Sister, I felt guilty and hurt. Here I was, expressing my feelings and experiences regarding infertility, and suddenly what I was willing to do wasn't good enough.
Some might say I didn't try hard enough. Some may say I didn't give it enough time. In theory, I suppose we are all supposed to leave the door wide open, and subject ourselves to the emotional and physical assault of fighting against our bodies to try to have a baby. But even world class fighters know when to tap out.
It's a serious injustice in our society that trying to have a baby plays such a huge role in who we are as individuals. I literally turn into one of those cartoon characters every time I read about how giving birth is the ultimate expression of womanhood. I suppose in a society where we sexualize women for entertainment and have to justify ourselves in every corner of our lives, where the major milestones revolve around sexual maturity (our first periods, losing our virginity, our first child, "the change"), we never really stand a chance. For those of us who most likely will never conceive, it feels like we are stuck in some kind of sexual limbo. Our bodies will never be changed by giving life. Any stretch marks on my body are the mark of my own making: puberty, the freshman 15, or in my case, weight gain brought on by medically induced menopause.
For years, I believed that I was preserving my fertility by not having my period. Hormonal suppression destroyed both my body and my spirit, but once I went off the progesterone-only pills, my cycle returned. I ovulated. I had extremely painful periods. I expected to be able to get pregnant, and why not? I was/am young, a mere 29 years old at the moment, but soon to be 30. I was once told by a gynecologist when I was first diagnosed with endometriosis that 30 was the magic number. A screwed up Cinderella story, get pregnant by 30 or risk never getting pregnant at all!
Two years ago, my husband and I began our journey to start a family. Frantic at first, driven by uneducated doctors who believed getting pregnant would treat my disease. Two surgeries, a miscarriage, and likely two more very early losses later, we made the unbelievable decision to stop fighting my body. While on a weekend getaway celebrating two years of marriage, and two years trying for a child, I said no more. No more blood tests. No more drugs. No more anxious "two week wait." I'm tapping out.
It's not that I'm giving into defeat, beaten down by life, or tired of heartbreak. My body is done. This year alone, I've had three surgeries for various reasons, but it's more than just feeling sick and tired. I actually feel pretty good, in comparison to where I was two years ago. What is really driving this decision is both what my body has been through, and what might await it if I don't stop.
Let me tell you a little about where my body is today. I've had two excision surgeries for endometriosis, and plan to have one more to remove my uterus for suspected adenomyosis, a disease which causes endometrial-like tissue to grow inside the uterine wall, causing severe cramping, bleeding, anemia, fatigue, and leg and back pain. It is also associated with several pregnancy complications, including placental abruption and early labor. I have bone loss in my spine from taking drugs I was told would "treat" my disease, but which just masked symptoms as my disease continued to grow. I have an extra 40lbs I have been unable to lose since my medical menopause. My joints hurt ever since I took one round of a fertility drug this cycle. I have 12 scars from surgeries that gave me back my quality of life, and in one case, saved my life. I have some fatigue and brain fog from who knows which cause, whether it be my disease directly or long term side effects from suppression drugs. I have a couple kidney diseases, countless aches and pains, headaches, allergies, all somewhat secondary and mostly managed well. And lastly, I have hormonal imbalances.
We've done a lot of work over the past year with our NaPro doctors to supplement and regulate my hormone imbalances. When we started, my estradiol was too low at ovulation and too high after. My progesterone was low, but close enough to normal that we actually got pregnant! After we miscarried, I continued supplementing my progesterone while we avoided conceiving until my surgery to check for blockages in my Fallopian tubes, since it would be risking life threatening ectopic pregnancy. The day I went into surgery, I found out my estradiol was perfect! Our efforts were successful, and we were given the green light to try again when I woke up with two healthy Fallopian tubes.
We began again with fresh hope, on the road to our "rainbow baby," and it wasn't long before my period was late again. Yet, something wasn't right. I saw a shadow on my pregnancy test, just enough to get my hopes up, but the next was stark white. For days, I peed on every test strip I had in my house, but that shadow never returned. Although four days late, my period eventually showed.
Bloodwork came back showing my progesterone was just 6.5, dangerously below the recommended 20 for a healthy pregnancy. Lower than my previous cycle, which was lower than the one before that, and the one before that. This cycle, I went against my gut feeling and took a fertility drug meant to improve egg quality and support my luteal phase by raising my progesterone. Despite that drug, and bioidentical vaginal suppositories, I opened my lab results the second day of our anniversary vacation to find my progesterone was at an all time low...and so was my estradiol. Now, both results were abnormally low, but this time, I also had severe joint pain that made it nearly impossible to use my right hand and arm for weeks. It was all for naught.
I know many people will question why I didn't try IVF. Our decision was complex, a mixture of contraindications and gut feelings. Risk of ovarian torsion and overstimulation, risk of going under anesthesia for a fourth time in a year, a deep, gut wrenching instinct that it just wasn't the right choice for us, and something else.
A feeling of being called to adopt.
I've always wanted to be a mother. My husband asked me years ago, while I sat in tears discussing why I wanted so badly to try for a baby, "What about your career? Don't you want to work on that first?" No...I'd give up my career in a heartbeat to be a mom. I went to college and received my masters degree because everyone has a place in society, and I loved working with children, but my heart's true desire was to have children of my own.
It is devastating to not have that wish filled by a biological child. I'll never feel a kick inside my body, or know what it's like to be utterly uncomfortable and exhausted at the same time as complete joy and fulfillment. I'll never push through 36 hours of labor and struggle to guide my child toward my breast for the first time, desperate that she latch on and learn to nurse. I'll never sit in the middle of my friends and family, tying ribbons around my belly and opening precious little baby socks and diaper cakes. I do so very much want those things. But there's something I want even more.
A healthy body. One that is able to care for my children, whom I will have someday. Born in my heart, carried home perhaps at six months or two years old, cherished and nurtured and loved. I will raise my children with the knowledge that I put their needs above my own desires. They need a mom, whole and happy, and not beaten down by life and medical procedures. Not pushed to the brink by miscarriage after miscarriage because the pregnancies just wouldn't stick.
When you go through parenting preparation courses, you discuss legal risk and the potential emotional roller coaster of adoption. Building a family when you have infertility isn't easy, no matter how you end up doing it. I know one thing, though.
This is the risk I AM willing to take.
I'm not willing to risk more bone loss. I'm not willing to risk the progression of my disease by increasing my estradiol via supplementation. I'm not willing to risk the breaking of my heart when I tried so hard to achieve a pregnancy only to lose it again. I'm not willing to push myself past what my spirit can endure. I know in my heart that something is telling me it's time to let go. My body cannot do it, not right now. Not after what it has been through. My body needs rest. My body needs pampering. My body needs me to focus on something outside of itself.
My body needs hope. My spirit needs hope. And somewhere, there is a child or two who need that hope as well.
I will be that hope. Every step in my life has led me to this moment. The moment when my husband held me in his arms and let me say no. "I'm all done. It's time to stop."
It's ok to say no. It's ok not to take the next step. If your body is telling you, no more, it's ok to listen.