I’m writing this newsletter, during September’s “Focus on PCOS Month” so that women living with Polycystic Ovary Syndrome (PCOS) will know about our PCOS Therapy Survey that is now live on the Centre for Menstrual Cycle and Ovulation Research (CeMCOR) website (www.cemcor.ubc.ca).
Physicians have treating PCOS/AAE with “band-aids” for at least five decades. The standard of therapy for PCOS is still combined hormonal contraception (CHC, “The Pill”) as it was in the 1980s when I began to see patients in Vancouver. CHC does not fundamentally improve the problems that women living with PCOS or AAE care about: weight gain and trouble getting pregnant1. The Pill does, however, give regular Pill periods (instead of lack of flow or only half a dozen periods a year) and helps a little with unwanted facial hair and pimples/acne. But, all of the Pill’s PCOS benefits disappear when it has been stopped for six months.
In the last decade Medicine has made many scientific advancements leading to new therapies; however, PCOS therapy has remained unchanged. Only recently has PCOS become better diagnosed2, especially during adolescence when the process of normal youth maturation may resemble it3. Another advance is finally appreciating the strong association of PCOS with depression and anxiety4,5. But, perhaps because there is no clear cause for PCOS, there has been no real therapy advancement. PCOS is women’s most common reproductive problem; it affects about 10 million women worldwide. The higher-than-normal men’s hormone levels associated with PCOS (androgen excess) is the most common type and occurs for 10% of all menstrual-aged women in the population6.
CeMCOR has committed, over the next five years, to focus on women living with PCOS/AAE. Our goal is to improve PCOS treatment and understanding/education. We began by submitting a blog as a “trial balloon.” The blog was published online by Clue® (one of the most common menstrual cycle apps) and proposed progesterone, estrogen’s partner hormone, as an effective PCOS therapy7. That blog was accessed by over 30,000 in the first six months! Many women subsequently emailed CeMCOR’s Ask Us feature seeking PCOS help. Thus, women living with PCOS are experiencing a real therapy need.
Our fundamental idea is that PCOS is caused by a brain that is sending too-fast bursts to the pituitary to make luteinizing hormone (LH) pulses that, in turn, are too rapid. The higher/more rapid LH pulses make the ovary produce too much testosterone and at the same time block development and release of an egg (ovulation). Only following ovulation is progesterone produced. The neat thing is that one of progesterone’s normal “menstrual cycle jobs” is to slow those LH pulses that are normally rapid at the middle of the menstrual cycle. If testosterone levels are high, an androgen-blocking medicine, often used for acne, called spironolactone may need to be added.
The insufficiency or lack of ovulation (called “anovulatory”) and progesterone are a key part of PCOS. We’ve already talked about the “androgen excess” PCOS part that is visible with skin and hair changes (hence, our name for PCOS = Anovulatory Androgen Excess).
I began giving progesterone to my patients with PCOS because I knew that they had low or absent progesterone levels and normal or high estrogen levels (so why give more and high dose estrogen in The Pill?). I gave progesterone for 14 days on and 14 days off (cyclically) as a way to provide regular and predictable menstrual flow for women with PCOS. I also knew that women with PCOS were at increased risk for cancer of the lining of the uterus and that progesterone therapy would prevent endometrial cancer. I didn’t know, in the 1980s, about the fast brain pulse origin of PCOS. But during cyclic progesterone therapy the remarkable improvements women reported, and I saw, said that this new therapy was doing something right.
We are now seeking, with a PCOS Therapy Survey (www.cemcor.ubc.ca), to better understand how women living with androgenic PCOS view The Pill, to learn what bothers them most, and then introduce the idea of progesterone as a new therapy. We need to know if women with PCOS would be willing to take cyclic progesterone and spironolactone for six months so we could get a better idea of how women respond, how LH and testosterone change and if there are any problems. Our eventual goal is to learn, from a random study, whether The Pill or cyclic progesterone/spironolactone is better for treatment of women living with PCOS.
Please widely share information about the PCOS Therapy Survey (www.cemcor.ubc.ca). We need to hear from women living with PCOS.
- Jerilynn C. Prior BA, MD, FRCPC
1. 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. Journal of Clinical Endocrinology and Metabolism 2017;102:604-12.
2. Teede HJ, Misso ML, Costello MF, et al. Recommendations from the international evidence-based guideline for the assessment and management of polycystic ovary syndrome. Clin Endocrinol (Oxf) 2018;89:251-68.
3. Ibanez L, Oberfield SE, Witchel S, et al. An International Consortium Update: Pathophysiology, Diagnosis, and Treatment of Polycystic Ovarian Syndrome in Adolescence. HormRes Paediatr 2017;88:371-95.
4. Dokras A, Stener-Victorin E, Yildiz BO, et al. Androgen Excess- Polycystic Ovary Syndrome Society: position statement on depression, anxiety, quality of life, and eating disorders in polycystic ovary syndrome. Fertil Steril 2018;109:888-99.
5. Brutocao C, Zaiem F, Alsawas M, Morrow AS, Murad MH, Javed A. Psychiatric disorders in women with polycystic ovary syndrome: a systematic review and meta-analysis. Endocrine 2018;62:318-25.
6. Bozdag G, Mumusoglu S, Zengin D, Karabulut E, Yildiz BO. The prevalence and phenotypic features of polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod 2016;31:2841-55.
7. Prior JC. The case for a new PCOS therapy. I’ve been treating patients with PCOS for 40 years. Here is my approach. https://helloclue.com/articles/cycle-a-z/the-case-for-a-new-pcos-therapy 2018.