PCOS and the Lack of Treatment Options

What is PCOS?

PCOS, meaning polycystic ovary syndrome, is a hormonal and metabolic disorder. PCOS affects people assigned female at birth (AFAB) and is caused when a person has higher than normal levels of androgen in their body. This disorder is a leading cause for infertility affecting around 10% of the world population. However, only 50% of the people who have PCOS are diagnosed. The criteria for PCOS diagnoses are that the person must have at least two symptoms of irregular periods, more than normal levels of androgen (which can be measured with a blood test), and polycystic ovaries which can be checked by an ultrasound. There is no known cause for this disorder, but experts do believe genetics does have some influence. Therefore, if a person has POCS, their biologically related family members will have a high possibility of also having PCOS. It is also believed to not be caused by the person’s life choices, but different diets and lifestyles will have impacts on the symptoms.

What are some of the symptoms and health complications of PCOS?

The symptoms of PCOS varies person-to-person. Some more common symptoms include missed periods, ovaries that are large or have many cysts, and due to these symptoms, they could also suffer from infertility. They can also have excess body hair, including the chest, stomach, and back; this is known as hirsutism. The overall cause of these symptoms and outcomes is abnormal androgen in their body which would give them more androgynous features. This means they might also have acne or oily skin, or male-pattern baldness or thinning hair. Around half of the PCOS population also suffers with obesity and weight gain, especially around their stomach. This is because most people who have PCOS also have insulin resistance, so they either produce too much insulin, or the insulin they produce is not functioning properly. Some of the health complications includes Type 2 Diabetes, high blood pressure, problems with the heart and blood vessels, uterine cancer, infertility, obesity, mood disorders, and inflammations.

The lack of diagnosis, information, and treatments

The diagnosis for PCOS can take a long time, although it only takes blood work and an ultrasound medically. This is due to the fact that many people do not seek the diagnosis, and some medical professionals do not have sufficient knowledge about PCOS which in turn makes the diagnosis longer. A study called “Delayed Diagnosis and a Lack of Information Associated with Dissatisfaction in Women with Polycystic Ovary Syndrome” by Bibson-Helm and others (2017) showed the lack of information regarding to PCOS. In the study, one third of the participants reported to have spent more than two years to get their diagnosis and more than 40% saw more than three health professionals before getting their diagnosis.

There are no available treatments that can cure PCOS, but there are some treatments to help manage the symptoms. The only two kinds of treatments that are available are medical therapy, usually birth control pills which would regulate their periods. Birth control pills are known to have many side effects which would sometimes worsen some of the other symptoms of PCOS, some examples are mood disorders and inflammations. Another kind of treatment is lifestyle management with different diets. It is important to note that lifestyle management is often not a given as a specific treatment by doctors, so it is expected that people would need to do their own research to find out this information. Lifestyle management also often involves a naturopathy which is not accessible to most people, especially with people of lower income.

“Delayed Diagnosis and a Lack of Information Associated with Dissatisfaction in Women with Polycystic Ovary Syndrome” also showed that overall, there was not sufficient information given to those who have PCOS from their health professionals. 43% of the survey participants claimed that they were dissatisfied with the information they got about lifestyle management, and 45% claimed that they did not even receive any information entirely. 54% were dissatisfied with information about medical therapy, and 29% were not given information about this treatment method. As well as this, 53% of survey participants claimed they were not given any information about the long-term complications of PCOS, while 40% were dissatisfied with it. Finally, results showed that 62% were not given any information about emotional support and counselling after diagnosis and 35% were dissatisfied with it.

What are some of the impacts of the difficulty and lack of diagnosis and lack of treatment options?

Since there is lack of information about PCOS, people will seek care for their presenting symptoms from different disciplines, sometimes instead of treating the root of their symptom. Thus, they might go to dermatologist for hirsutism or psychologists for mood swings and depression. This is certainly helpful and this is encouraged. However, it is better to know and treat the root of these symptoms, since some treatments from those disciplines might not be helpful. Early diagnosis and interventions are important because it helps with treatment options for acne, hirsutism, menstrual irregularity, anxiety, depression, and counselling for future fertility. These are important since the symptoms may not worsen with the correct treatments. Also, knowing the direct cause of symptoms, together rather than individually, can be better for the person’s mindset.

Due to the fact that there is lack of options in treatments, some people will also unfortunately choose to not treat their PCOS. This would have both short and long-term health impacts. They would have much higher chance of having the health complications mentioned previously. They might also have sleep apnea, which is disrupted breathing in sleep, non-alcoholic fatty liver disease, and depression.

How can people take action to manage their own PCOS?

It is unfortunate that even though there is a high percentage of the AFAB population who have PCOS, there are very few treatment options and information accessible to them. However, there are a few actions that they can bring to their own hands.

The first action is to research for themselves. As shown above, most medical professionals would not give the people with PCOS the sufficient knowledge they need about their disorder, but there is a lot of information online that could help people to gain more knowledge about it. They can learn about the different symptoms of PCOS, even with its uncommon symptoms. Since PCOS is a hormonal disorder, it does affect many parts of the body, and it is important for those who suffer from PCOS to consider associated complications.

Another thing they can do is to talk to their medical professionals for two main things: for the diagnosis for the complications of PCOS and for the best options of birth control pills. There are many complications for PCOS that people must be aware of, and they can also learn the best way to manage their own PCOS through the different checkups. They can ask for regular checkups for blood pressure, glucose tolerance, and cholesterol and triglyceride levels. They can ask for depression and anxiety disorder tests, and screening for obstructive sleep apnea. They can also talk to their medical professionals for what kind of birth control pills are the best option for them and whether they should take birth control pills. Birth control pills will regulate the hormones in the body and decrease the chance of uterine cancer. At the end of the day, it is up to the individuals and their discussion with their doctors to decide when to take birth control pills and the best options for them, if that is a treatment option chosen.

The last thing people with PCOS can try to do is to change their lifestyles. The focus of lifestyle that helps with PCOS symptoms are often related to weight loss in the medical world, but that should not be the goal of the individuals. They can try to reduce the sugars and carbohydrates in their daily lives. People with PCOS often also have insulin resistance which is when their body cannot use insulin properly and increase the production of androgen in their body. Meaning, if they ate too much sugars and carbohydrates, it would increase androgen, and worsen their symptoms. However, they should not completely cut from it as it is unrealistic to do, and it would affect most people’s mental wellness. Reducing these foods does seem to usually be the best option. It can also be helpful to focus on whole grains, fresh produce, and plant-based proteins while limiting on sugars, processed good, and trans-fat to manage the insulin levels in their body.

Conclusion

It is notably upsetting to see that there is not much information accessible for some disorders, especially with such a large percentage of the population suffering from PCOS. We certainly have to demand for more accessibility and more studies around these topics. The good news is that there are more studies about PCOS and other disorders than ever before. However, it will take a lot of energy and time to make those studies accessible to those need it. Therefore, we should help each other, by raising awareness and spreading helpful information, to make the lives of people suffering from PCOS easier than present day.

Written by Linda Adilai

Edited by Jaime White

References

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. J Clin Endocrinol Metab. 2017 Feb 1;102(2):604-612. doi: 10.1210/jc.2016-2963. PMID: 27906550; PMCID: PMC6283441.