I Was Diagnosed With Infertility as a High School Student
For as long as I can remember, my two answers to the question “What do you want to be when you grow up?” were always the same: a nurse and a mother. For Molly, a certified K through 6th grade teacher, her two answers have always been, similarly, a teacher and a mother. Molly and I both accomplished our first goal by completing the necessary schooling and diving headfirst into our careers. Ignorantly, until recently, I never considered the number of barriers that can impede women like us from reaching that second dream. However, Molly had.
Premature Ovarian Failure with Infertility. Molly received that diagnosis one week after her 16th birthday. Two weeks leading up to the day, she went to her pediatrician for her annual physical. Prior to her visit, Molly already knew that she was going to emphasize the fact that at age 15 (nearly 16), she still had not gone through puberty yet. In the back of her mind, Molly knew that her doctor was going to tell her that she is simply a late bloomer and to stop rushing (I mean, who actually likes getting their period? Not me.) Nevertheless, Molly wanted reassurance that everything was okay.
Molly’s primary care physician referred her to a gynecologist. She had lab work drawn, a uterine ultrasound completed, and the words, “This is just to make sure there’s nothing there,” calmly spoken to her. Seven days after her 16th birthday, Molly returned for a follow-up appointment. The purpose of this visit was to explain any findings and answer any questions. “I remember this part clear as day…” Molly said to me as she recounted the emotional moment. “The gynecologist said, ‘I have good news and bad news. What do you want to hear first?’ And I chose the bad.”
That’s when Molly’s doctor gave her the P.O.F. diagnosis. The doctor continued by saying, “But the good news is that it’s treatable,” and introduced the topic of hormone therapy. Molly wasn’t listening; she was too busy insisting that there was a mistake. She thought, “It had to be.” There was no family history of reproductive disorders, she had never received chemotherapy, and had rarely been exposed to radiation. Molly admitted that it took her a long time to get out of the denial stage.
Her gynecologist referred Molly to an endocrinologist. Two months later, she began hormone therapy. She started by wearing an estrogen patch, then taking a progesterone pill. There is a very specific and individualized course that it is imperative to follow. Molly is currently on year seven of hormone therapy, and has about 27 years remaining.
The cause of Molly’s infertility diagnosis is still unknown. Her doctors estimate that she had been in ovarian failure since she was approximately 10 years old, which is likely when she went through menopause. They were able to estimate that timeline based on bone density scans, which revealed the extent of her osteoporosis, and subjective history, which is when Molly and her mother recalled the frequent hot flashes Molly suffered during her elementary school years. Some doctors speculate that the extreme earliness of her condition could even have an autoimmune etiology. “Who knows,” Molly sighed, “There probably will never be any concrete explanation for why this happened.”
I asked Molly what she considers to be the most challengings aspects of her diagnosis. First, she explained the side effects of the hormone therapy. As previously mentioned, Molly’s osteoporosis has progressed over the years to affect her arms, back, neck, and hip; loss of bone density is an expected finding. She regularly takes supplements to promote bone health. Additionally, metabolic counseling is necessary with long-term hormone therapy use and low libido is an unfortunate, not to mention wrongfully taboo, side effect.
However, without hormone therapy, Molly’s doctors say she is at an increased risk for a variety of health problems, such as heart disease secondary to low estrogen levels. Most importantly to her, Molly also would not be able to have children using other methods without a menstrual cycle (which she needs hormone therapy to have.) And because she has always wanted to be a mother, Molly feels the side effects are a small price to pay in exchange for that happening one day.
In Molly’s case, her diagnosis of infertility means she cannot conceive a child naturally, nor using her own eggs. Instead, she can do in vitro fertilization (IVF) using donor eggs. Reproductive options have been one of the more recent discussions that Molly’s physician has had with her. Molly said, “They [the doctors] understood when I was diagnosed that I had just turned sixteen and having kids wasn’t something I was thinking about in that moment. But we have been talking about it more over the past two years.”
This conversation with Molly was not the first time I’ve heard her story. Though, from the first time I had, I noticed the way she spoke with hope in her voice. She advocates frequently for individuals with reproductive disorders and always tells her story loudly with her head held high. However, Molly noted that she didn’t always speak of her experience in this way.
Molly admitted:
“It took about five years for me to really come to terms with it between going to therapy, my doctor informing me of my reproductive options like using donor eggs, and my own personal support systems. But those five years were really hard to deal with. I pushed it off. I was depressed and felt really lonely. I was blaming myself and I was blaming God because I didn’t know who to blame. I needed to put the blame on someone even though it’s nobody’s fault, it’s nobody’s doing.”
As someone whose life is intertwined with her faith in God the same way Molly’s is, the part about blaming herself and blaming God spoke to me. When you don’t know who to blame for what is happening to you and how you feel, so you pick anyone just to simply grant yourself some answers.
Molly continued:
“I made myself feel worthless because I felt like I failed as a woman at only 16. That I wasn’t going to be deserving of any kind of love because of this flaw. And that’s how I thought of it as – a flaw. Not going to lie, one of my underlying fears still is that someone won’t accept me for it. Most couples don’t find out about their infertility until they’re already trying. I have to have the conversation beforehand and say ‘Look, this is what’s going on.’ I know the right person won’t let this affect him, but I’ll cross that bridge when I get there.”
I asked Molly if she has encountered any triggers, or situations that perpetuate her feelings towards her diagnosis. Personally, I imagined the way they call it ovarian failure would hurt me. How can someone feel like they didn’t fail as a woman when the word failure is literally in the name of the condition?
Molly shared:
“I remember when my mom’s coworker got pregnant and my mom said to her, ‘This will be the best experience you’re ever going to have.’ The realization that I was never going to have that for myself the same way other people do. Also, people always say to me, ‘You look just like your mom!’ and ‘You are your mom’s clone!” and I’ll never have that. The worst part of those moments was that I felt like I couldn’t talk to anyone about it because I was sixteen and this isn’t something 16-year-olds worry about or know how to talk about. As for now, I think as my friends start having kids a lot of those feelings will resurface, but I think I’ll have a better grip on coping with it.”
Once Molly began coping in a healthy way, it became easier to accept the diagnosis. Seeing a therapist and leaning on friends and family is what she says helped the most. Molly also delved into research on Premature Ovarian Failure. While in college, she created a qualitative research study measuring people’s empathy towards women with reproductive disorders.
Molly asked her gynecologist to write up a case study similar to hers. Then, Molly created a survey with questions such as, ‘How would you respond to the patient who just received this diagnosis?’ and they had to choose the answer that most closely represented what their response would be. The correct choice was the one that exhibited the most empathy. After the participants completed the survey, they received two written resources about reproductive disorders. Molly noted, “Many people commented that they walked away learning something about it. For most, it was that they didn’t know how common these disorders were and how much pain, physically and emotionally, they could cause.”
The biggest question I had for Molly was what she would say to someone who just received the same or similar diagnosis. She took a deep breath and said, “Medicine and treatments make a huge difference. You have more options than you may initially think as far as being treated overall and also starting a family. This doesn’t define you or who you are as a woman.” Molly quickly added, “Or man, because yes—male reproductive disorders do exist.” She concluded by firmly stating, “You are not your diagnosis.”
And she’s right, you aren’t. No one is. There is no such thing as a walking, talking DSM-V classification or ICD-10 code. You are a person. You might have a diagnosis, but your diagnosis does not have you.
If Molly’s story inspired you to share one of your own, please email anothersunrisestories@gmail.com and include a brief summary. I will respond back as soon as possible to plan a time for us to speak. I want to hear what it has been like for you to have another sunrise.