Given that primary ovarian insufficiency (POI) affects a small percentage of women, it’s no surprise that it often takes years, as well as visits to several clinicians, to get a proper diagnosis. Yet, beyond getting the right diagnosis and needed hormonal care, it’s important to note something else that goes untreated for far too long — emotional and mental health.
Women with POI often need support to navigate the diagnosis and take care of their mental and emotional health. At My 28 Days, part of our mission is to provide a comprehensive community of care for women seeking knowledge about their own bodies and reproductive health. The goal is to help women with POI have everything they need to embark on the path to resilience and recovery.
“It’s a well-known fact that many clinicians remain unfamiliar with POI and that many women go undiagnosed for too long. But on top of that discouragement is the fact that there’s really no established and effective support system once women are diagnosed,” said Dr. Lawrence “Doc” Nelson. Dr. Nelson is founder of My 28 Days and a former leading POI researcher at The National Institutes of Health (NIH) for 30 years. He added that even family members struggle with how best to support women with POI.
As a result, our experience shows that many women with POI emotionally cope by avoiding the issue altogether — a primary defense mechanism, he said. We want to change that.
POI is defined as a loss of ovarian activity before the age of 40 and is characterized by irregular or absent periods and reduced fertility. Previously known as “premature ovarian failure” (POF), POI is most commonly idiopathic and can occur either with an abrupt halt of menstrual periods or gradually, with months of menstrual irregularity before periods stop altogether. POI is most commonly accompanied by symptoms of estradiol deficiency that occur during perimenopause and menopause, including hot flashes, night sweats, mood changes, memory problems, vaginal dryness, dyspareunia, and low libido.
Acknowledgment, Validation, Action
Although most women with infertility learn of their diagnosis over several months, usually after failed attempts at conception, most women with POI usually uncover their infertility after a series of other presenting symptoms, often even before conception has been considered. In a 2011 NIH study, “From Victim to Survivor to Thriver: Helping Women with POI Integrate Recovery, Self Management, and Wellness,” women described their feelings in the hours after getting diagnosed with POI as “devastated,” “shocked,” and even “confused,”. The diagnosis can send them on a difficult journey of trying to comprehend what it’s like to have a serious and incurable chronic condition. It’s important to keep in mind that not only does the disease greatly reduce the odds of pregnancy, but a POI diagnosis also affects a woman’s physical and emotional health and well-being — so care management must address both.
According to the study, patients are faced with:
- The acute shock of the diagnosis
- The associated stigma of infertility
- Grief from the death of dreams
- Anxiety from the disruption of life plans
- Confusion around the cause
- Symptoms of estradiol deficiency
- Worry over the associated potential medical consequences, such as reduced bone density and cardiovascular risk
- The uncertain future that all of these factors create
“It’s important to acknowledge and validate a woman’s feelings when she’s trying to accept a life-changing diagnosis,” said Dr. Nelson. In fact, living with a chronic condition involves all sorts of challenges, from controlling symptoms, social anxiety, impaired self-esteem, and organizing the time needed to manage treatment regimens. “Many women with POI report experiencing social distress and urgently feel the need for more guidance on how to cope.”
Research shows that an evidence-based, health-centered approach can assist women navigating the transitions that come with acceptance of the diagnosis and the ongoing management of the condition. This health-centered approach — vs. a disease-centered approach — can put patients in partnerships with professional physical and mental practitioners that can help a woman with POI transition from seeing herself as a victim, to a survivor, to a woman who is resilient and thriving.
“There’s a corresponding effect between the mind and the body,” said Dr. Suzanne Nixon, a licensed professional counselor and certified mindfulness meditation teacher with more than 25 years’ experience. “If you have a physical condition, there’s no doubt it’s going to affect your state of mind, and vice-versa … If you have a mental health condition, it’s going to affect how you feel physically,” she added. “After a POI diagnosis, you may feel fatigued, drained, or even hyper. It’s vital to address the mental health component in tandem with medical treatment.”
The World Health Organization (WHO) defines health as a “state of physical, mental, and social well-being and not merely the absence of disease or infirmary” and includes three specific yet related concepts — recovery, self-management, and wellness.
“It’s important to note that women can continue to maintain wellness — even in the midst of disease — when in partnership with the right clinicians,” said Dr. Nelson. “This starts by encouraging women with POI on the road to recovery to shift the mindset to one that centers on health rather than disease.”
Knowledge is Power
Based on Dr. Lawrence’s published NIH research, women with POI as a group score adversely on validated measures of anxiety, depression, positive affect, and negative affect, with the underlying contributors to the adverse scores being: 1) illness uncertainty, 2) stigma, 3) goal re-engagement (flexibility), 4) and purpose in life. Purpose in life was the most powerful factor in determining mood. It’s essential that clinicians address this compelling data.
“Our findings are consistent with the hypothesis that clinicians could improve the emotional well-being of their patients with POI by informing them better about their condition, helping them to feel less stigmatized by the disorder, and assisting them in developing alternative goals with regard to family planning and well-being,” Dr. Lawrence said. “Our best hope is to give these women agency through both education and advocacy. Knowledge provides the fuel to power resilience and recovery.”
According to Ava Vanderstarren, an actor, author, and activist who has had POI for more than a decade and has become an outspoken champion for helping others feel less alone, advocating for yourself is essential. “First … even though it’s frustrating and exhausting, it is really important to keep advocating for yourself until you find a doctor who does know and who can be supportive,” she said. “Second … Self-care and health is most important … because if you’re not healthy, then you can’t do anything and you can’t also do anything to help anyone else, either. And then I think the third thing might be, don’t underestimate the impact of hormones on your health and on your mental health,” she said.
Here are some practical tips as you begin your journey:
- Optimize your brain power. Get on the NIH P-HRT regimen to improve sleep and cognition.
- Educate yourself about POI.
- Advocate for yourself with your clinician. Find one who understands POI and takes your symptoms and concerns seriously. You can find a downloadable list of questions to ask your doctor here.
- Find a POI friend who has a positive attitude. You can request to join the My 28 Days private Facebook group (which has upwards of 3,000 members) here.
- Take online screening tests to determine if you are at risk for depression, anxiety, post traumatic stress disorder, or an eating disorder.
- Get professional help if the screening test suggests a mental health disorder.
Building Resiliency
Resiliency is the ability to adapt successfully in the face of stress and adversity while maintaining normal psychological and physical functioning. Every individual experiences stressful events and the majority are exposed to trauma at some point during life. To boost your resiliency, consider these tips from The Mayo Clinic:
- Get and stay socially connected. Having strong relationships with loved ones and friends and having a supportive network can help you get through both good times and bad. It’s also true that volunteering, joining a spiritual community, or local organization can help you have purpose.
- Make each day meaningful. Wake up with the aim of doing something purposeful and personally fulfilling every day. Set clear goals, keep a gratitude journal, and do things that help you look toward the future with hope and meaning.
- Learn from challenging experiences. Use the experience you’ve gained from past hardships in your favor. Reflect upon the skills, strategies, and tools that helped you through difficult times. Track your feelings and progress in a journal as a way to incentivize future behavior.
- Have hope! Although you can’t change the past, you can embrace the future. Having a positive mindset, even in difficult situations, helps us overcome.
- Take care of yourself. Tend to your own physical and emotional needs through daily physical activity and hobbies you enjoy. Eat a healthy diet, prioritize sleep, and practice stress management and relaxation techniques. Schedule fun in your day!
- Be proactive. Don’t resort to the primary defense mechanism of hiding from the situation at hand. Instead, figure out what needs to be done, make a plan, and take action. Although recovering from a tough diagnosis takes time and can be challenging, know that you have the power to steer your recovery journey.
