About My 28 Days
My 28 Days has its roots in curiosity, seeking knowledge, finding answers, and helping patients. Dr. Lawrence M. Nelson is a global leader in primary ovarian insufficiency (POI). Beginning in 1986, he organized and directed a research program on women’s health at the National Institutes of Health (NIH) Clinical Center in Bethesda, Md,, USA. He saw a need to further investigate this menstrual cycle disorder that has a profound effect on the lives of young women. During his nearly 30 years at NIH, he convened and inspired a team of dedicated physicians and scientists from many disciplines who shared his passion. Working together, his team developed both clinical and laboratory POI research programs. According to two separate published academic reports, this NIH POI research team would later be recognized as the global leader in POI. The reports came to this conclusion based on the number of citations from other researchers in the field, also known as the impact factor.
Despite Dr. Nelson’s efforts to build a global coalition on POI while working at the NIH, this integrated team of experts and the associated research program was dismantled when he retired in 2017. Concerned that women with POI felt abandoned, he then teamed with the Conover Foundation with the goal of providing women with POI the necessary resources they need to find answers on menstrual and ovarian health and to be empowered to make decisions and get care based on evidence and scientific research.
Beginning in 2017, seeing the undeniable benefits of providing education, scientific research, support, and community to a growing number of women, he organized a private Facebook group to help women advocate for crucial — and, in some cases even life-saving — patient care. The Facebook group became a success and now has more than 3,000 members.
With Dr. Nelson’s leadership, the Conover Foundation started My 28 Days™, a program to replicate the NIH model. My 28 Days™ is a forum where women with POI can find answers based on science and feel supported to advocate for their own health and well-being. Welcome!
What is Primary Ovarian Insufficiency?
Primary ovarian insufficiency, or POI, is a rare condition in which the ovaries stop functioning as they should before age 40. When this happens, the ovaries fail to produce the typical amounts of the hormone estrogen or release eggs regularly. This condition, also called premature ovarian failure, can often lead to infertility. Although POI is sometimes confused with premature menopause, these conditions are not the same. The key difference is women with POI can have irregular or occasional periods for years and might even get pregnant. But women with menopause stop having periods permanently and never become pregnant. Restoring estradiol levels in women with POI to mimic their natural state helps prevent some complications that occur as a result of low estradiol, such as osteoporosis, cardiovascular disease, impaired sexual function, and brain health.
Although primary ovarian insufficiency (POI) is not fully understood by the medical community, we continue to bring to light what the research uncovers. We do know POI is a rare disorder caused by an issue within the ovaries’ follicles. In addition to being tiny pouches where eggs are held, the follicles are also responsible for producing estradiol, a critical chemical message in the blood of young women. In women with POI, these follicles don’t work normally, which causes estradiol hormonal deficiency, ultimately affecting the normal patterns of menstrual cycles and fertility.
Primary ovarian insufficiency is not premature menopause, though it’s often confused with menopause considering the similarity in symptoms. In POI, ovaries may periodically function, and then stop; and then start and stop again, whereas menopause occurs when a woman’s body stops producing the hormones that cause a menstrual period entirely. It’s important to understand that there are effective treatments for POI and that it’s not a permanent obstacle to pregnancy or quality of life.
What’s in a name?
It’s important to understand the background on the term “primary ovarian insufficiency.” Previously referred to as “premature menopause” or “premature ovarian failure,” primary ovarian insufficiency was first used by Fuller Albright, a Harvard physician and scientist, in The American Journal of Medical Science in 1942. Primary ovarian insufficiency is the accurate scientific term in America today.
The Europeans recently decided to create the new term “premature ovarian insufficiency.” In our view, this term is scientifically problematic because it implies the condition is a premature development of menopause, a condition caused by depletion of ovarian follicles. This is a problem scientifically because, in most cases of primary ovarian insufficiency, there are follicles remaining in the ovary which are prevented from functioning properly.
It is important to remember this: some women with POI will get pregnant after the diagnosis. We do these women and their families a disservice if we indirectly relate this to an early menopause, a condition in which pregnancy is not possible.
The ovarian hormones estradiol and progesterone play an important role in a woman’s life, such as breast development, body shape, and body hair. They are also involved in the menstrual cycle, fertility, and pregnancy. Estradiol production is typically highest in the first half of your menstrual cycle before ovulation, while progesterone rises during the second half of your cycle to prepare your uterus to nourish an embryo (if conception occurs).
If you have a persistent change of seven days or more in the length of your cycle interval before age 40, you may be in POI. If this happens between the age of 40 and 45, you may be in early perimenopause. In addition to being marked by changes in menstrual flow and in the length of the cycle, many women with POI or in early perimenopause also experience hot flashes, sleep problems, vaginal dryness, and mood swings. Women with these conditions are also at greater risk for heart disease, osteoporosis, and depression due to an earlier-than-normal decrease in estradiol levels.
Although there‘s currently no proven treatment to restore normal function to a woman’s ovaries, there are remedies and behaviors that can reduce the symptoms and health risks associated with POI. It should also be noted that between 5 and 10 percent of women with POI get pregnant without medical intervention post-diagnosis. Research suggests these women go into “spontaneous remission,” wherein the ovaries begin to function normally on their own. In most cases, however, the recommended management includes physiologic hormone replacement therapy (P-HRP), calcium and vitamin D supplementation, weight-bearing physical activity, and exercise and diet to support maintaining a healthy weight.
