For women, nonbinary people, and trans men, PCOS symptoms can be distressing, confusing, and painful – and, unfortunately, so can the healthcare meant to treat it. PCOS is a difficult condition to diagnose and manage, but its characterisation as a women’s reproductive issue, as well as confusion with the unrelated term ‘polycystic ovaries’ has presented additional barriers.
To standardise care and guide best practice, health experts have developed a set of internationally-recognised clinical guidelines for PCOS. Over 1000 people worldwide contributed to the development of the new guidelines, including healthcare professionals, researchers and academics experts, doctors and patients.
Guideline Areas of Recommendation
Diagnosis and screening
Nailing down a set of standard diagnostic criteria for PCOS has been controversial to say the least.
Irregular periods have been acknowledged as an indicator of PCOS, but given that menstrual cycles fluctuate naturally during puberty and menopause, ascertaining the boundary between normal and abnormal has proven to be a challenge. The use of contraceptives and HRT can also mask symptoms or make it difficult to test for PCOS, especially when prescribed to youth.
For adults, the guidelines state that two of the below criteria are sufficient for diagnosis:
- Menstrual cycles that are either shorter than 21 days or longer than 35 days, fewer than 8 a year, or nonexistent.
- High testosterone levels observable though visible symptoms like excessive body hair, thinning head hair, acne, or enlarged genitals.
- High testosterone levels determined through a blood test.
- Abnormal levels of anti-mullerian hormone determined through a blood test.
- An ultrasound of the ovaries showing abnormalities.
If an adult shows up to a doctor with both of the first two criteria, the guidelines state no further testing is necessary to make a diagnosis. If they only meet one of the first two criteria, the guidelines recommend the doctor order a blood test for high testosterone, a blood test for anti-mullerian hormone, or a pelvic ultrasound for abnormal ovaries (though not all three at once).
For adolescents, ultrasounds are not recommended, and hormones can be all over the place, so diagnosis really depends on having both irregular periods and visible signs of high testosterone. This unfortunately means that it can take a long time, even years, for teens to be diagnosed.
The guidelines note that PCOS can increase the risk of developing a number of other conditions: cardiovascular disease, type 2 diabetes, sleep apnea, endometrial cancer, depression, anxiety, and eating disorders. They recommend healthcare workers keep an eye on their patients for signs of these disorders.
As PCOS has a genetic component, the guidelines state that relatives of those with PCOS might also have a higher risk of hormonal disorders like type 2 diabetes and cardiovascular conditions like high blood pressure.
PCOS takes a toll on mental health. Its effects on weight and body hair, as well as its impacts on fertility mean that people can find their own bodies distressing and their life goals harder to reach. Treatment can be expensive, ongoing, and wreak hormonal havoc.
The guidelines propose that healthcare workers recognise patients’ quality of life as an important aspect of living with PCOS, screen patients for depression and anxiety, and offer referrals to psychological support if needed. The guidelines emphasise the importance of shared decision-making and patient agency in this treatment.
The guidelines also advise caution when prescribing antidepressants; many of the difficulties of PCOS are social rather than biochemical in nature, and some antidepressants can even exacerbate PCOS symptoms like weight gain.
Higher weight is a symptom of PCOS, which can be immiserating as well as a risk factor for further health problems.
The guidelines strongly emphasise that weight stigma only compounds the difficulties PCOS patients already face. While support should be given for people who want to lose weight, the guidelines state that no one specific diet or exercise plan is better than any other and that patient preferences must take precedent.
Managing hormonal symptoms
Contraceptive pills, metformin, anti-androgens and anti-obesity treatments can help ease the symptoms of PCOS, but are usually prescribed off-label. ‘Off-label’ means that a drug has been designed and approved to treat another condition, like diabetes or birth control, but doctors will prescribe it for PCOS anyway. However, whether a drug is legally able to be prescribed off-label is down to a nation’s drug regulators.
There is a good level of evidence that these medications can work well for some people. Where it is allowed, the guidelines recommend that health professionals should discuss the evidence with their patients, and talk though possible benefits, concerns and side-effects.
The guidelines state that there is no one contraceptive that works best for PCOS. While there are many studies, most of them had a significant risk of bias and the evidence base is low for the use of any one contraception over any other.
When oral contraceptives are going to be prescribed, the guidelines recommend that doctors follow a formula: considering a low hormonal dose first, considering natural estrogen preparations, following general population guidelines, offering anti-androgens only when oral contraceptives haven’t made a difference after 6 months, and considering specific PCOS risk factors like weight gain, high blood pressure, and water retention when deciding which contraceptive to try.
People with PCOS have higher risk pregnancies, and the guidelines state that healthcare professionals should ensure that PCOS status is identified during antenatal care, and appropriate monitoring and support is provided.
The risks of pregnancy with PCOS include significantly higher odds of miscarriage, gestational diabetes, gestational hypertension, pre-eclampsia, preterm birth, low birth weight, intrauterine growth restriction, and caesarean section.
Studies into metformin during pregnancy have shown it does little to help most of the above issues, but might theoretically reduce preterm birth.
In cases of infertility, the guidelines emphasise that patients should be reassured that pregnancy can often be successfully achieved either naturally or with assistance.
They set out a formula for fertility treatment, starting with Letrozole as a first-line medication (with the possibility of clomiphene citrate + metformin or gonadotrophins as alternatives), then checking for ovulation. If ovulation has occurred, this cycle can be repeated until pregnancy is achieved.
If this line of treatment didn’t result in ovulation, the guidelines recommend starting on gonadotrophins (or considering laparoscopic ovarian surgery as an alternative). If this works to induce ovulation, this cycle can be repeated until pregnancy is achieved.
Otherwise, the guidelines recommend patients be referred for In-Vitro Fertilisation (IVF).
Making the guidelines accessible and understandable for people with PCOS was a priority for this project.
The PCOS smartphone app, available for free though Android’s Google Play and Apple’s App Store as well as a website, is designed for people diagnosed with PCOS, people who suspect they might have PCOS, and people who support those with PCOS. The app already boasts 35,000 users in 184 countries and is available in 4 languages (English, Spanish, Arabic, and Simplified Chinese), with plans underway to add another 7.
The app provides an evidence-based and plain-language guide to understanding and living with PCOS. It also includes a symptoms tracker and analysis tool to help people monitor and manage the ways it affects their own body, as well as a discussion forum to connect to others with the condition.
As clinicians tend to be under-informed about PCOS, and patients have long been dissatisfied with the standard of care they receive, the authors of the guidelines acknowledge that shared decision making and a self-empowerment are fundamental to living well with PCOS. As such, the app also includes a question prompt list to help patients prepare for appointments, take control of conversations, and advocate for themselves when talking to health professionals.
Not ova yet
Like PCOS itself, the guidelines operate according to their own cycles. Unless there are any regulatory changes to PCOS drugs or groundbreaking new research, the guidelines are set to be reviewed every five years. Integrating new discoveries and research, the societies and organisations will be reengaged, the guideline panels revised and reconvened and the guidelines updated once more.