Let’s Talk Menopause spoke with expert Dr. Lawrence Nelson about primary ovarian insufficiency (POI).
POI is an insufficiency of ovarian hormones, notably estradiol (estrogen). Primary ovarian insufficiency is a deficiency issue – the patient is deficient in estradiol. If you are vitamin D deficient, you take vitamin D to restore your body to normal levels. It makes sense. The same is true for POI. The treatment for POI is to replace the estradiol that is too low or too deficient to keep bones healthy, the heart healthy, and even the brain healthy.
It is essential to note that POI is an entirely separate issue from menopause. POI is not premature menopause. It is important that those diagnosed with POI get the healthcare that is specific to their condition as there are a lot of myths and misconceptions about primary ovarian insufficiency. It is a problem of intermittent, unpredictable, ovarian function that can go on for decades. To lump POI in a menopause basket creates confusion.
In 90% of POI cases, we don’t know the cause. In about 4% cases, it can be linked to an autoimmune issue with the adrenal glands. In those cases, it’s important that the root cause be determined to assure proper treatment. Another 4% of cases are due to a genetic cause related to fragile x syndrome. In roughly 2% of cases it’s due to a chromosome problem.
First, patients will need to advocate for themselves to get a proper diagnosis. If your cycles are not normal, get tested, and don’t take no for an answer! If you are tested and diagnosed with POI, advocate for the cause to be determined, or at least to rule out some possible causes. You will want your doctor to test your adrenal antibodies, your FMR1 gene (to see if your condition stems from fragile x), and your chromosomes to ensure the normal 46XX.
The next step, and this is critical, is to be prescribed physiologic hormone replacement therapy.
Many doctors are quick to prescribe birth control pills or even hormone pills to be taken orally. This is not the right answer. Your ovaries make estradiol (estrogen) and put it directly into your bloodstream; if you take estradiol through your mouth, your liver breaks down most of it, and this process has a bad effect on the liver. Physiologic estradiol comes either through a skin patch or through a vaginal ring—both methods deliver the estradiol directly to the blood, just as the ovaries do.
Next, I would encourage newly-diagnosed patients to get a bone density/DEXA scan right away to determine their current bone density. Our three-year prospective study at NIH research found that on average, in patients who take physiologic HRT, their bone density levels came back to normal range. In addition to HRT, patients should get exercise, take calcium and vitamin D, eat more healthfully, and exercise. If these changes are implemented, we tell our patients they do not need to be tested again until the standard age of 65. However, if at the time of your first scan you have low bone density, get on the HRT and have your bone density tested again in three years’ time.
Lastly, I would urge women diagnosed with POI to keep an open mind when it comes to building a family. This is a very delicate issue. As a doctor, I need to wait for patients to ask about it because what we hear from a lot of women is they go to see their gynecologist who then refers them to a reproductive endocrinologist. Unfortunately, these doctors are not specialists in preventative medicine. They don’t have much training in treating POI, such as keeping your bones and your heart healthy, or ensuring you have the right levels of hormones that your body needs. The focus is less on overall patient health and wellness. The most common story we hear is that patients leave these appointments being told, “If you want to do egg donation, come back to us; otherwise, there’s not much we can do for you.” The analogy we hear from women is that they feel that stepping into the office of reproductive endocrinologists is a lot like being on an assembly line. There are even some unethical practitioners who encourage women to do IVF even though their FSH (follicular stimulant hormone) levels are in the menopausal range, which costs patients lot of money and the chances it will work are near zero.
Our recommendation now for women is to search out a doctor specializing in preventative medicine first.* A woman’s long-term health should be the first thing addressed. The best way to improve one’s fertility is to get healthy. She needs to start off with a preventative medicine approach: begin the physiological HRT, get exercise, eat healthier, etc. Once those issues have been addressed, patients are better able to investigate egg donation, adoption, and/or embryo donation.
Research shows that women diagnosed with POI have a higher incidence of anxiety and depression. POI has a major impact on some women’s meaning and purpose in life. And if you undermine someone’s meaning in life, it can be life altering.
The reason I created My Family Cares about Primary Ovarian Insufficiency and Early Perimenopause facebook page, is that women diagnosed with POI cannot find doctors to give them the care they need. There is no effective care distribution process. Zero. How do we give women diagnosed with POI the care they need based on evidence?
I encourage patients to move away from expecting that care to come from ob/gyns and, instead, work with preventative medicine doctors. Medicine has grown so specialized. Women with POI need a doctor who will look at the wider picture. If you go to a muffler shop, you’re going to leave with a muffler but for patients diagnosed with POI, they want someone to look at the whole car, to deal with their overall health.
I encourage women diagnosed with POI to check out the Facebook page. It is a private group whose primary objective is to create a repository of knowledge about POI. Your care must be based on evidence. Sadly, many women cope with their diagnoses by avoiding the problem. When they hear their sister is pregnant, they cry. After getting baby shower invitations, they stay home. If a person copes by avoiding, things get worse and worse. Our Facebook page is meant to help women face the realities of a POI diagnosis, find credible answers, and get research-based care.
The most important thing I can tell women who have been diagnosed is do not take no for an answer. You must advocate for yourself. This is a rare disease that doesn’t get the attention it needs – you must fight for your health.
* The Conover Foundation suggests women with POI take a stand with regard to the importance of a preventative medicine approach to POI. Evidence has demonstrated POI is associated with a shorter life expectancy if not managed appropriately. The shorter life expectancy is related to the long term effects of estradiol deficiency.
“Fertility specialists are generally not adept at a preventive medicine approach as this is not the focus of their training and experience.
The aim of preventive medicine is the absence of disease, either by preventing the occurrence of a disease or by halting a disease and averting resulting complications after its onset. Preventive medicine can be practiced by governmental agencies, primary care physicians and the individual person.
Most medical schools have a department of Family and Preventive Medicine. This is a good place for women with POI to find such a clinician. As having a rare disorder, women with POI need to be prepared to educate the clinician about their needs and about the disorder in general. Preventive medicine clinicians are generally very open to learning about new evidence in their field.”
Dr. Lawrence M. Nelson is the leading authority on primary ovarian insufficiency (POI). For 30 years, Dr. Nelson, a gynecologist who specializes in women's health, conducted POI research at the US National Institutes of Health (NIH) Clinical Center in Bethesda, MD. His passion has been to help understand POI and its causes and to develop more effective treatments. “Doc” approaches both research and well-being in an integrated manner with the goal of helping women touched by POI achieve balance in body, mind, spirit, and emotion.
He now serves as president of the nonprofit Mary Elizabeth Conover Foundation and is developing social enterprise healthcare-related initiatives to elevate care and conversations around POI and women’s health. His latest project is My28Days.org, an initiative and website set to launch in February of 2023 that will serve as a gathering place for women to find credible, evidence-based answers about POI and menstrual and ovarian health.