It’s weird to be thinking about something other than the immediate: my job, our wonderful congregations, my husband, what I’m going to cook for dinner… ‘rona. So much of my time is spent on these “right now” things, and praying desperately for a future we know will be so much better. But today, as I mindlessly scrolled through Instagram, I saw photos and a hashtag that made me stop scrolling. NIAW… National Infertility Awareness Week… and today, April 25, 2020, is the last day. And suddenly, I’m not thinking about the right now, I’m thinking about the what was and what could have been.
Just a warning, I try not to be graphic, but I do mention things like periods, menopause, and surgery. So, if any of that is gross to you, you may want to stop reading now.
Infertility is such a weird thing, because everyone experiences it differently. So here’s my story.
I always had heavy periods, but when I was 16 or 17 they became unbearable. Just excruciating. I was tired all the time. And it just seemed to get worse and worse and the pain would have me curled into a ball on our couch crying.
Finally, it got so bad that I couldn’t move, it was like my insides were being stabbed with a fiery hot poker, so my mom took me to the doctor, concerned it might be my appendix or some other organ had an infection. The doctor said it was unlikely, and honestly, it couldn’t really be that bad, but she would do an ultrasound and let me know if there were any problems. We never heard from her, and she didn’t return our phone calls when we left her messages.
The next month, when I was doubled over in pain, and I passed out from what felt like a hemorrhage, my mom found a different doctor to take me to.
Dr. Cynthia Morris. She was amazing. She was kind, and gentle, and she actually listened to my mom and me.
And after hearing everything I was going through she said, “You’re so young, I don’t want to give you this diagnosis, but I think I know what’s wrong.”
She asked the other doctor for the results from my first ultrasound, and sent me for a second. She was furious when she got the results. She said I had at least one cyst on my ovaries, with evidence of others that had burst. She said she was still concerned and wanted to schedule me for a laparoscopy.
After the surgery she held my hand and told me that I had endometriosis. So far the damage to my organs was pretty limited, and she was able to clean up most of the lesions, but she was cautious because she didn’t want to cause scar tissue.
She prescribed lupron depot for six months as a treatment. Lupron sends you into menopause. The theory being, if you don’t have a cycle the endometriosis quits growing. And it helped! I had hot flashes and gained 10 pounds (at that point in my life I was underweight so the increase was welcomed), but I had energy and I wasn’t in pain. It was wonderful. And expensive. When the six months ended we hoped that it was long enough to keep the endometriosis from returning.
Within months the excruciating pain was back. So back to Dr. Morris. This time she recommended Depo-Provera, theoretically it would be less traumatizing to my body, it was a shot every three months, so also less expensive.
It was also terrible.
I gained 50 pounds in the first three months, I spotted every single day. When I went in for my next injection I told the nurse I’d like to speak to the doctor, that I was having some issues, she just waived her hand, told me they couldn’t be that bad, gave me the injection and walked out.
I was 19, scared, and flustered. Looking back I get annoyed with myself for not being more assertive. When the doctor came in she was sympathetic about the side affects, but she thought they should clear up with this second injection. They did not. I refused to get another, and we decided to “wait and see.”
Within two months I was back in her office doubled over in pain. She scheduled another laparoscopy to see how things had changed in the last year.
And boy, had they changed.
After the surgery Dr. Morris informed me that I was in stage 4 endometriosis. A lesion the size of a grapefruit had caused significant damage to my peritoneum and the backside of my uterus.
I was 19, and I was told I likely would not have children. For some people, they know exactly who they are and what they want out of life. I was not one of those people. I thought I wanted to be an attorney. Then I tried to join the military, then I thought I’d be a teacher, but I never really gave being a mother much of a thought, it was a given. I’m one of six children. My older sister had six children. My niece already had a baby. Women just have children… not getting pregnant seemed more of a problem than getting pregnant.
And yet, here I was, 19 being told I couldn’t have children. I told myself it was fine, I didn’t really want kids anyway, right? Who needs to be responsible for another human being their whole lives anyway? Not me.
And thus began eight years of off and on chemically induced menopause to keep the pain at bay. There was a brief period after I moved when I had to find a new doctor who didn’t believe me when I told him my symptoms, so he refused to treat me with lupron and instead gave me birth control, while he waited for my records to arrive from my previous doctor. Birth control was terrible. Mood swings, weight gain, food cravings, nausea. Finally he prescribed the lupron.
And then I met Lewis. And we were great friends, and I liked him so much. And then we decided to start dating, but when do you tell a person you can’t have children? It’s weird to tell them too soon, but you don’t want to wait until you’re too attached because you want them to have an out if no kids is a deal-breaker.
I decided to be weird and tell him right away. And he said he didn’t care. We both knew when we started dating that we were going to get married some day.
And nine months later we did. And then, with this wonderful human being by my side, I was devastated that I couldn’t have his children. I thought that I had processed it, dealt with it, and come to terms with it. But really, until I was married, the idea of children was abstract, it didn’t matter while I was unmarried. Being unmarried felt like a choice, not being sexually active was a choice. I was choosing to not get pregnant and have children. After getting married, it was starkly and painfully and humiliatingly not a choice. I didn’t have children because I couldn’t have children…
Three years after we got married we had insurance again and I found a doctor and he prescribed lupron again. After about six months the lupron quit working. I was miserable and in pain, so I went back to my doctor. And he asked me, “what are you holding on to?”
He reminded me of the damage, and that the possibility of having children was gone. He asked me how I was feeling physically (which was terrible at the time), and if I was so miserable, what was the point? I’d been through several surgeries, pretty much every treatment option there was. Clearly things weren’t going to get better. Again, what was I holding on to? And I didn’t have an answer.
So, he recommended a total hysterectomy with a bilateral oophorectomy (a removal of the uterus, fallopian tubes, and ovaries). I need to be clear, it sounds harsh, but he wasn’t being harsh when he asked. He was being blunt, sure, but sincere, and kind. Why endure pain and misery when you don’t have to?
At thirty years old I was officially, and irreversibly menopausal. I would never be pregnant.
And, in some ways, it’s one of the best things I’ve ever done. Never having a period? Glorious! Before this, my life was an endless repeat of the same thing every 25 days, like clock work. Day one through three, changing a pad (or later a menstrual cup) every hour on the hour. Day four through five, change every four hours. Day six every eight hours or so, until day seven when it was just spotting. For the next seven days (day 7-14) I’d be sluggish and low on energy, just trying to recover. Day 15 I’d feel like a normal human being, until day 20 or so, when I would get tired, sluggish, nauseated, with intestinal distress until day 25, when it would start all over again. A week. Each month for a week I would feel like a normal human being. But now, post surgery, I feel normal all the time. Granted the hot flashes and mood swings weren’t great, but they leveled out, and after a year I started hormone therapy. The weight gain has been a bummer, But I feel good!
Most of the time, emotionally, I’m fine, and don’t even think about it, but it hits me sometimes. I cry at tv shows where someone struggles with fertility. Mother’s Day is a hit or miss dumpster fire of emotions. Sometimes my friends and family will acknowledge me on that day and I’m torn between feeling touched and being annoyed, like being an aunt is some kind of consolation prize. I’m torn between wanting people to see me and acknowledge me and just wanting to disappear.
Infertility is a result that is the same for everyone: the inability to conceive and carry a child of your own. But how we get there is different for everyone. I don’t know what it’s like to miscarry, I’ve never felt the joy of having a baby inside of me, or the devastation when that baby is gone. I don’t know what it’s like to try and try and try and try, disappointed time and again. I don’t know what it’s like to have secondary infertility, when you have one perfect child and can never have another no matter what you do. I don’t know what it’s like to have a rainbow baby, the fear and anxiety as each day goes by, not knowing what will happen.
But we should be able to talk about it. About our fears, about our grief, about the joys in the midst of it all. Because even though our journey through infertility is singular, we don’t have to be alone.