March 21, 2024

National Endometriosis Awareness Month

Lessons in Infertility and Resilience: We All Need to Start Asking, “Why?”

By: Emily Dobrzynski, DO

Director’s Note: March marks National Endometriosis Awareness month. Research shows this condition affects up to 10% of reproductive-aged women, and it occurs in up to 50% of women with infertility. Yet, the diagnosis is often delayed. In this poignant interview conducted by Dr. Emily Dobrzynski, a former FACTS elective student, we highlight the story of Isabel* who struggled with unexplained infertility until she encountered a doctor trained in NaProTechnology. This doctor asked: “Are your periods painful?” Isabel wondered how she was supposed to compare her pain to others, misled by the idea that periods are expected to be painful. It took years for her to finally receive a diagnosis of endometriosis. Now, Isabel shares her gratitude for the physician who finally started asking why and looking for the problem. As Dr. Dobrzynski notes, Isabel’s story serves as a valuable reminder of the importance of broadening a differential diagnosis to dig for the root cause.

 

As I chatted with Isabel* over the phone, I could hear a toddler in the background, occasionally asking to go outside and kick a ball around. Until this point, my experience learning about fertility awareness-based methods (FABMs) had been largely theoretical. The FACTS elective introduced me to the science underscoring these methods with information organized by goals and disease states and case studies of nameless, faceless patients.  By talking directly with Isabel, I had the privilege of connecting with a woman whose voice is kind, knowing, determined and self-assured. Her story sheds light on crucial flaws in mainstream gynecology, the poignant and painful experiences of infertility, and the importance of critical thinking for both patients and clinicians. We all need to start asking “why” to try to get to the root of infertility issues.

Journeying through Infertility

Isabel had heard about FABMs while growing up in her Catholic family. Her mother encouraged her to pay attention to her cycles beyond simply circling her menses on a calendar. A self-identified “data nerd,” Isabel began more detailed charting in her mid-late 20s. At the time, she had gone back to nursing school and started to become more interested in the science of charting. To track her own cycles, she utilized an app on her phone to record mucus patterns and basal body temperature — an unofficial form of the Sympto-Thermal Method. When she got married at 30 years old, she was seemingly healthy and had never used hormonal birth control. During her first year of marriage, she and her husband used this self-learned Sympto-Thermal Method to prevent pregnancy. She experienced constant cervical mucus, appropriate temperature changes, and ovulation pains — the whole gamut. With no family history of fertility issues, she did not expect to have any problems getting pregnant after that first year.

However, by the time she turned 33, Isabel had still yet to get a positive pregnancy test. She decided to consult a fertility specialist at the big university hospital where she worked as an ICU nurse. Familiar with complicated and detailed medical workups, Isabel similarly expected a thorough workup in the fertility clinic. However, after a basic evaluation, Isabel had been told that nothing was wrong with her; she passed the testing with “gold stars.” Rather, the couple’s infertility was attributed to her husband, whose semen testing had put him at low-normal ranges. The doctor simply said to her, “let me know when you’re ready for intrauterine insemination (IUI).” The couple did not want to pursue IUI, but Isabel was presented with no other option. As a medical professional herself, Isabel felt frustrated. She knew the extensive workups available to patients for other issues, and she was left with a diagnosis of unexplained infertility.”

An Unexpected Diagnosis

Isabel recalls that her mother mentioned NaProTechnology for further investigation into her infertility, but she dismissed it at first because her university doctor had cleared her of any problems. Two years later, she finally reached out to the only NaPro doctor in her state. He taught her to chart formally with the Creighton Model and used her charts to do a targeted laboratory evaluation. He assessed the previous workup the university doctor had done, but he also did serial pre- and post-peak hormonal labs. Isabel couldn’t recall whether she felt angry or laughed when she heard the results. She learned that her pre-peak progesterone and estradiol both started normal before dropping off. Her post-peak progesterone followed the same pattern. It also started high normal then “fell off a cliff.” Isabel thought back to the doctor that gave her gold stars. She realized if she had conceived, she may not have even made it to a missed period.

Melancholic sad woman looking through the window at home

“She learned that her pre-peak progesterone and estradiol both started normal before dropping off. Her post-peak progesterone followed the same pattern. It also started high normal then “fell off a cliff.”

Isabel was started on a regimen that included letrozole and bio-identical progesterone on post-peak day 3 for 10 days. During the initial workup, the NaPro doctor also ordered a repeat ultrasound. An ovarian cyst was noted on the ultrasound, and this was the first time Isabel ever heard the word “endometrioma.”

When the doctor asked, “Are your periods painful?” Isabel thought, “Compared to whom?” Between movies and advertising and friends who had it much worse, Isabel said that people “expect periods to be painful.” In retrospect, she believes that these comparisons misled her about the severity of her own symptoms. She later underwent an exploratory laparotomy, which revealed endometriosis and positively identified a mass on her left ovary as an endometrioma. In addition to that mass, several other spots were also removed. Luckily her adhesions were minimal. After surgery, she had additional workups, including serial ultrasounds to make sure her follicles were getting big enough — and they were. They also added hCG trigger injections to make sure the follicle ruptured. After three months of trying to conceive with no success, Isabel’s doctor ordered an endometrial biopsy as a “double check” in case endometrial cancer was a cause of her infertility. All surgery pathology returned negative. At the same time, life continued to move forward. Her husband received an offer for his dream job in a different area. The couple let go of their old home and also decided that they were ready to stop chasing their dream of pregnancy.

People “expect periods to be painful.” In retrospect, she believes that these comparisons misled her about the severity of her own symptoms. She later underwent an exploratory laparotomy, which revealed endometriosis.”

 Lessons in Resilience

After the move, the couple adopted their now 3-year-old daughter.

“Adoption is not a cure for infertility,” Isabel said. “It is a separate calling.”

Never getting a positive pregnancy test despite all their effort was disheartening. After a pause, I asked her: “After all this, are you satisfied with the outcome?”

She replied that, though it might sound odd, it was an important lesson in not letting one thing become so important as to take over one’s whole life.

“If not being able to get pregnant would ruin my life, I have some resiliency issues,” Isabel said.

Furthermore, Isabel noted that even if she had tried IUI, there was no guarantee it would work. She recalls early conversations at the first fertility clinic, where she was told not to worry about her unexplained problem, that everything could be bypassed with IUI, and that she could still get what she wanted. For Isabel, this was neither a true statement nor an acceptable solution. She wanted to know why she struggled to get pregnant and what the underlying cause was. Isabel was never taught about the role of FABMs in medical management during nursing school. When asked about barriers to learning FABMs as a patient with infertility, she explained that FABMs were simply not presented to her as an option at the beginning. She emphasized the need to think about how and why things work (or don’t work) and to have a critical thought process that doesn’t stop at “unexplained.”

For patients, it is important to recognize that doctors are not always going to be able to diagnose the problem or provide every possible solution. Sometimes physicians and other clinicians just don’t know because they have not been taught about identifying root causes of infertility themselves. As a future physician, I was moved by Isabel’s experience as a patient and more understand the importance of broadening a differential diagnosis. Isabel highlighted the potential harm in trying to circumvent a problem with conventional steps rather than getting at the root cause and approaching the problem holistically. Isabel encourages patients and medical professionals to think critically.

“People are smarter than they think they are,” she said.

“Isabel highlighted the potential harm in trying to circumvent a problem with conventional steps rather than getting at the root cause and approaching the problem holistically.”

Hope for the Future

For Isabel, consulting with the NaPro doctor was worth it.

“At least he looked,” Isabel said. “At least he found out what the problem was. I have endometriosis.”

She started her NaPro journey hoping to become pregnant and, although she never did, she is satisfied knowing the root cause of her problems. Isabel still charts and uses progesterone every cycle and reports that her periods are much improved. The severe pain and bleeding accompanying her periods have resolved, and she feels her overall health is better because of her workups and charting efforts. The information she has learned about her own body has empowered her, and she remarked that she feels more prepared to identify and address any issues that may arise once she enters perimenopause.

As I thanked her for her time and willingness to share her story, I heard the voice of her toddler in the background calling once more to go and play.

*Names have been changed to respect the privacy of the interviewee. All information is shared with permission.

ABOUT THE AUTHOR

Emily Dobrzynski, DO

Emily Dobrzynski, DO is a first year resident completing Medicine-Pediatrics combined residency training at Loyola University Medical Center. She participated in the FACTS electives during her final year of medical school while attending Des Moines University. As a Med-Peds physician, she has a wide range of interests, including adolescent medicine and women’s health.

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