Hormonal Contraceptives , PCOS, and Misinformation
Polycystic ovarian syndrome (PCOS) is an endocrine and metabolic disorder that affects 7-10% of women in the global population. That’s about 1 out of every 10 women in our lives. PCOS can be associated with increased risk of cardiovascular disease, diabetes, and endometrial cancer.
Hormonal methods of birth control (like the oral contraceptive pill, vaginal rings, devices, and implants) are commonly prescribed for PCOS. A surprising number of patients have arrived at my office for the first time having been given a prescription for one of these forms of birth control and have had lots of questions. Most of those questions involve a very similar scenario: with very little time to receive in-visit counseling on their treatment plan, patients look for information online and find discussions declaring these medications to be “bad.” No one wants to take something that might be “bad,” so this has led them to feeling distressed and nervous about starting their prescribed medications. This is a hard place to be as a patient- both aware you need care and also unsure what to trust.
It turns out this is not an uncommon situation for PCOS patients. Surveys were conducted at locations in multiple countries asking people with PCOS how they felt about their medical experience. A striking majority were dissatisfied with both the diagnostic process and the educational counseling they received. To follow up on this, another set of investigators found that people with PCOS were more likely to distrust their primary care provider, or have had an argument with a healthcare provider, than those without PCOS. What I take from this is that: 1) having a chronic disorder is really tough and stressful and this goes unacknowledged in healthcare visits, 2) PCOS is complex and requires a lot of patient education for which there isn’t enough time, 3) the healthcare system is not really set up to address chronic conditions well in general, 4) misinformation can take advantage of these gaps and further hurt relationships patients have with their doctors-which may already be tense, 5) patients may be delaying treatment or missing out on treatment because they can’t get the information they feel they need.
Hormone based birth control seems to be a flashpoint for this frustration with the healthcare system in general, likely because these medications are frequently prescribed and with a minimum of patient education, often due to short visit times. So, many patients read this as, “hormonal contraceptive prescriptions are more arbitrary than specific in my case and I am not being seen,” when in fact they may have been prescribed for very specific reasons. Misinformation preys on this type of scenario and this is unfortunate. Hormonal methods of birth control are neither good nor bad and it doesn’t help us to define them in those terms. These medications are tools with risks and benefits. For people who are candidates for hormone based birth control, they can be useful for managing other symptoms of PCOS, beyond simply menstrual cycles. And in some people with PCOS who are at risk of endometrial cancer, they can be a critical asset in preventing that type of cancer.
Are hormonal methods of birth control right for everyone? No. Can they useful in many cases? Yes. Is it worth asking your provider for more education about what you have been offered if you are unsure? YES! Many providers aren’t aware that their patients would like to know more about their treatment plan, and many patients aren’t sure how to follow up if they feel things were not clear. We know time is limited in these visits, which is likely why we see the dissatisfaction responses in those PCOS surveys mentioned above. If you need more information, the first thing to try is a follow up appointment. You CAN go back and ask more questions. To make the most of that kind of follow up, write a list of questions you have about your treatment or condition and keep it with you. Another good idea is to write down just what you hope to accomplish in being treated. Sometimes your goals and the provider goals are different! This is often critical information for decision making and so important to know.
References:
Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome. J Clin Endocrinol Metab. 2017 Feb 1;102(2):604-612. doi: 10.1210/jc.2016-2963. PMID: 27906550; PMCID: PMC6283441.
Lin AW, Bergomi EJ, Dollahite JS, Sobal J, Hoeger KM, Lujan ME. Trust in Physicians and Medical Experience Beliefs Differ Between Women With and Without Polycystic Ovary Syndrome. J Endocr Soc. 2018 Aug 1;2(9):1001-1009. doi: 10.1210/js.2018-00181. PMID: 30140785; PMCID: PMC6101505.