Part 3: Polycystic Ovarian Syndrome (PCOS) or Hypothalamic Amenorrhea (HA)?
I had my first amenorrhea-related OBGYN appointment this week. In hindsight, I’m wondering why I wasn’t referred sooner. Twenty-two months without a period, one Pap smear, two physical exams, two pelvic ultrasounds, and an MRI later – I’m referred to an obstetrician-gynecologist for a disorder of my reproductive system.
My primary care provider is awesome, so I feel like I should have advocated for myself and asked for a referral sooner.
Even more ironic is that I started my first period in nearly two years on the exact day of the OBGYN appointment – what?! Since I was beginning to doubt I’d ever have another menstrual cycle, I was actually excited about this. 😛
In preparation for this long-awaited appointment, I printed out all my labs from the last three years, just in case my general practitioner didn’t send them over. I was mentally prepared for the OBGYN to suggest that I go on birth control or other synthetic hormone(s) to regulate my cycle, to which I would politely decline. Now that I’ve:
- Resigned from work and de-stressed for a two months,
- Been on “full feed” (that’s at least 2500 calories/day) for a few weeks,
- Stopped exercising like a fanatic – yoga, low-exertion weights, walking only – and
- Had a bona-fide period,
I’m cautiously optimistic that my body will do what it’s been designed to do – have regular cycles.
Overview of appointment:
- The doctor was very professional, courteous, and understanding. I liked her a lot.
- She recommended that I have a blood draw on the 3rd day of my cycle to run tests on hormone levels, including luteinizing hormone (LH), testosterone, progesterone, and dehydroepiandrosterone sulfate (DHEAS), which weren’t measured in my previous labs and will help determine the cause of amenorrhea.
- She suggested that I should go on progesterone to have a “forced bleed” in the future.
- When I suggested hypothalamic amenorrhea (HA) as a diagnosis, and explained the last two years of my life to give context, I felt like she was dismissive and reinforced a Polycystic Ovarian Syndrome (PCOS) diagnosis. She told me (paraphrasing), ” … I’ve seen a lot of lean women with PCOS.”
Two questions I keep asking myself:
Why are my healthcare providers focused on PCOS diagnosis, when I don’t have obvious clinical or any biochemical characteristics of the disorder?
Why did my (female) OBGYN seem unaware or dismissive of a HA diagnosis?
Let’s do a quick overview of PCOS and HA:
What is polycystic ovary syndrome (PCOS)?
- PCOS is the most common endocrine abnormality (hormone imbalance) in women of reproductive age and carries with it significant health risks, including infertility, endometrial hyperplasia, diabetes, and cardiovascular disease.
- Characterized and diagnosed by observing two out of the three of:
- polycystic ovaries viewed on ultrasound
- oligomenorrhea (long time between periods) or amenorrhea (no period)
- excess androgens (“male” hormones like testosterone)
- Most common symptoms:
- Physical side effects of hyperandrogenism like acne and male pattern hair growth (or loss)
- Insulin resistance (which increases risk of diabetes)
- Ovulation disturbances – high levels of androgens can suppress or prevent release of egg, which can cause infertility
What is Hypothalamic Amenorrhea (HA)?
- HA is a type of secondary amenorrhea/chronic anovulation that can impact both developing and sexually mature women (also referred to as hypogonadotropic hypogonadism).
- HA results from a functional reduction or disruption in GnRH release due to chronic negative energy balance, metabolism, body composition, and stress.
- Caused when the hypothalamus shuts down the reproductive system via decreased release of gonadotropin releasing hormone (GnRH). GnRH causes the synthesis and release of hormones that control egg production and release.
- Characterized by the following:
- Amenorrhea/lack of menstrual cycle (not caused by pregnancy, pituitary disorder, or PCOS)
- Inadequate nutrition, over-exercise, or extreme psychological stress
- Low levels of the FSH, LH, and estrogen hormones
- Most common risk factors:
- Emotional stress
- Excessive exercise
- Nutrient starvation
In my doctor’s defense, my latest ultrasound did show multiple small cysts on my ovaries; however, my ovarian volume is still below the 10 mL standard threshold for a PCOS diagnosis.
Long-story-short: I have all the characteristics and risk factors of HA; however, I only have one (maybe two) of those for PCOS.
My lab results from the latest appointment are not in yet. These – especially the LH and testosterone values – will hopefully confirm that I do not have PCOS.
In the meantime, I’ve gained another pound, been sleeping about eight hours per night, and feeling fabulous – even without running thirty miles per week, doing hundreds of burpees, etc, etc. Who knew??
I’ve come to terms with the notion that our culture promotes disordered eating through unrealistic expectations. But what to do about it? Any ideas?
Gordon, Catherine M., et al. “Functional Hypothalamic Amenorrhea: An Endocrine Society Clinical Practice Guideline.” The Journal of Clinical Endocrinology & Metabolism, vol. 102, no. 5, 2017, pp. 1413–1439., doi:10.1210/jc.2017-00131.
“Hypothalamic Amenorrhea.” Az, www.azfertility.com/your-miracle/fertility-basics/causes-of-infertility/hypothalamic-amenorrhea/.
Lee, Tony T., and Mary E. Rausch. “Polycystic Ovarian Syndrome: Role of Imaging in Diagnosis.” RadioGraphics, vol. 32, no. 6, 2012, pp. 1643–1657., doi:10.1148/rg.326125503.
Rinaldi, Nicola J., et al. No Period. Now What?: a Guide to Regaining Your Cycles and Improving Your Fertility. Antica Press, 2016.
Watson, Stephanie. “Polycystic Ovary Syndrome (PCOS): Symptoms, Causes, and Treatment.” Healthline, Healthline Media, 29 Mar. 2019, www.healthline.com/health/polycystic-ovary-disease.