By the age of 20 years approximately 1 in 10,000 girls and young women will develop primary ovarian insufficiency (POI) (1
). The condition, also known as premature menopause and premature ovarian failure, is characterized by the presence of menopausal level gonadotropins and estrogen deficiency in association with oligo-amenorrhea (2
). There are metabolic sequelae related to the sex hormone deficiency that are of paramount importance as well as potential emotional sequelae related to the threat to parenthood that need to be addressed (3
When communicating information to adolescents it is important that parents and clinicians realize that this time of life encompasses a broad range of emotional maturity. For most girls and young women a threat to parenthood is a threat to self-identity. This threat presents a challenge to existential well-being for both the girl’s parents (their threat to grandparenthood) and to the girl herself. All societies value childbearing and parenthood and generally childlessness is stigmatized in most cultures (6
). There is historical evidence suggesting that in the United States reproductive conformity has been manufactured, promoted, and at times even coerced (9
). When an adolescent and her family are faced with a health crisis that impacts her reproductive capacity, and introduces associated stigma, the family must adapt to the disruption of the normal state and the associated unknowns and uncertainties (10
). This requires approaching the situation from a family systems perspective. The nuclear family rather than one individual is the emotional unit (11
). A health crisis impacting reproduction will reverberate through the family and the issues must be addressed in this context.
Clinicians must integrate many factors into their approach. How best to deliver the news? How much should be disclosed, to whom, at what time, and in what order in the family? Is there merit for “just in time information” for the child? How do we know we are not manufacturing and promoting reproductive conformity and possibly even being coercive in ways we don’t even appreciate with regard to the child’s reproductive future? How can we hope to know what the child’s unencumbered future dreams around reproduction would have been as a fully mature adult absent this disorder? How can we as clinicians and parents approach this? How can we avoid sending the message to the child in a subliminal manner that “in order to be normal as an adult woman you need to have a child and be a parent”?
Getting the diagnosis of primary ovarian insufficiency is emotionally traumatic for most women. The most common words they use to describe how they feel after getting the diagnosis are “devastated,” “shocked,” and “confused” (4
). The diagnosis embarks women on what is perhaps best termed a psychosocial transition to find their new identity (5
). As a group (), we have come to the conclusion that adult women with this condition would benefit from having access to a “POI Recovery Program.” This would be a structured psychosocial intervention based on evidence. The goal of the program would be to not only facilitate recovery of emotional well-being in this specific population, but also the maintenance of good physical and emotional health over the long term. At this point the nature of this program has not been formulated. As members of the POI Recovery Group we take this opportunity to bring awareness to this need. In many ways, in view of the multiple parameters, helping adolescents and their parents navigate this psychosocial transition is expected to be the most challenging situation. The dilemma is that there are teens and their families in our clinics right now who need guidance on how to approach this, and there are no evidence based methods currently available.
Primary Ovarian Insufficiency Recovery Group
One of the authors (LMN) had a mother request written guidance on how to discuss the elements of primary ovarian insufficiency with her 14 year old daughter as she matured and naturally wanted more information. This particular mother was vehement that she did not want to discuss the reproductive issues related to the diagnosis until the daughter raised the question, an “information just in time” approach. She wanted her daughter to develop in her peer group without having potentially stigmatizing information before she needed it. The daughter at the time was concerned only about developing breasts and having menstrual periods as her friends were doing. Her main question was, “Can I still play soccer?” This mother’s request for guidance was the stimulus for developing a trial document for this one mother. We call it, “TIPS AND TOOLS FOR TALKING: Helping Your Daughter Understand Primary Ovarian Insufficiency.”
Our intent with this communication is to bring these issues out into the light of day, and to share an example of one such document. As a group we have concerns that these tips may cause more harm than good if used improperly. We view the tips at this point along the lines of a prescription drug. The clinician needs to decide when and how to provide this guidance. We as a group have some reservations about making this guidance available outside of a clinician-family relationship. Clinical judgment is required here. For example, for families that already have major dysfunctional communication dynamics it would be best to address this aspect of the clinical situation first before tackling how to best provide more detailed clinical information about the primary ovarian insufficiency to the child.
Our purpose is to start a dialogue around these issues. Each clinician will need to assess the proposed tips and adapt to their own clinical situation. We hope this is a first step toward developing an evidence-based recovery program for families that have teens with primary ovarian insufficiency.
Here is the document as currently configured by our POI Recovery Group: