Endometriosis Vs. PCOS: Similarities, Differences, and Support
By: Charlotte Myers
September is Polycystic Ovary Syndrome (PCOS) awareness month. It is a U.S. federally designated event that promotes awareness and education about PCOS among the general public, those affected by the condition, and healthcare professionals. It ultimately seeks to improve the quality of life for people with PCOS, to help them overcome their symptoms, and to reduce and prevent their risks of developing related life-threatening diseases, including diabetes, cardiovascular disease, nonalcoholic fatty liver disease, and cancer.
This month, we not only want to define what PCOS is, we want to explore, how it relates to and differs from endometriosis. We also want to promote different people and organizations that offer support to the PCOS community.
PCOS Explained
PCOS is a genetic, hormone, metabolic, and reproductive disorder that affects 5-10% of uterus carriers, and it is the leading cause of infertility. PCOS is caused by an imbalance in the reproductive hormones, which leads to problems in the ovaries. The ovaries are crucial to a healthy menstrual cycle, so PCOS is connected to complications with ovulation and irregular menstruation. With irregular and even missed periods caused by PCOS comes other problems like potential infertility and the development of cysts.
The cause of PCOS is unknown, and various factors play a role in the development of it. There are some consistencies between the presence of certain hormones and PCOS. Those with PCOS tend to have heightened levels of androgens, which control the development of male traits like male-pattern baldness. Although all uterus carriers produce small amounts of androgens, including the hormone testosterone, those with PCOS have more than average. Increased androgens can prevent ovulation, thus causing PCOS symptoms.
People with PCOS also tend to have insulin resistance. Insulin is a hormone that turns food into energy, and insulin resistance occurs when the cells in the body do not correctly respond to insulin. When a person has insulin resistance, their insulin blood levels increase, and they may have a heightened risk of developing type 2 diabetes.
PCOS Symptoms
Symptoms of PCOS often begin in adolescents. They include irregular periods, excess facial and body hair, severe acne, small cysts in the ovaries, insulin resistance, anxiety and depression, infertility, weight gain, and male pattern hair loss. Those with excessive hair growth may see it grow on the face or unexpected parts of the body. This is called hirsutism, and it affects around 70% of people living with PCOS. PCOS can make it more difficult to lose weight and can cause darkening of the skin along neck creases, near the groin, and underneath the breasts. Sometimes people with PCOS may develop small flaps of excess skin in their armpits or near their neck, called skin tags.
Although PCOS is among the most common causes of infertility, it is still possible to become pregnant. People with PCOS can discuss methods that help with ovulation and increase the chances of becoming pregnant with their chosen reproductive healthcare provider.
Who gets PCOS?
PCOS directly affects about 10% of uterus carriers within their reproductive years. It often gets diagnosed among uterus carriers who struggle to conceive during their 20s and 30s, though it is possible to develop PCOS at menarche (first period). The risk of PCOS impacts all races and ethnicities, but those who are obese or have a family history of PCOS may be at a greater risk of developing the condition. Some research also suggests that environmental endocrine-disrupting chemicals (EDCs) can play a role in causing PCOS.
Diagnosing PCOS
About half of people with PCOS go undiagnosed, which may have to do with it not having one single method of diagnosis or clear diagnostic criteria. Diagnosing PCOS may come down to a process of elimination of why symptoms are occurring. Doctors tend to use various physical exams like physical exams, pelvic exams, pelvic ultrasounds, or blood tests in addition to discussing medical history to reach a diagnosis of PCOS.
To be diagnosed for PCOS, other conditions need to be ruled out and a person needs to have two or more of the following symptoms:
Irregular or no periods
Physical indications of heightened levels of androgens (extra hair growth on the face, chin, or body; acne; or hair loss or thinning)
Increased blood levels of androgens
Multiple cysts on one or both ovaries
The Differences Between PCOS and Endometriosis
While there is overlap among the main symptoms of endometriosis and PCOS, the conditions are not the same, and they affect people differently. Endometriosis and PCOS present symptoms related to menstruation - with heavy, irregular, and sometimes painful periods being the most common. A major complication, and often a giveaway of potential overlap between the two conditions is infertility. It is not uncommon for either to be considered when seeking infertility treatment.
Also, the two conditions affect different parts of the reproductive system. Endometriosis is a condition where tissues similar to the endometrium lining begin to grow throughout the body, typically concentrating within the pelvic region, while PCOS is a hormonal disorder where excess androgens like testosterone are present.
Overlap Between PCOS and Endometriosis
There is little research on the likelihood of endometriosis and PCOS occurring comorbidly. However, according to the 2019 study The Prevalence of Incidental Endometriosis in Women Undergoing Laparoscopic Ovarian Drilling for Clomiphene-Resistant Polycystic Ovary Syndrome, 16% of PCOS patients who did not have any endometriosis symptoms were found to have incidental endometriosis after undergoing laparoscopic ovarian drilling
Additional Comorbidities of PCOS
People with PCOS develop an increased risk of various other conditions, although experts have been unable to confirm whether PCOS causes these problems, or if these problems cause PCOS. Insulin resistance is a common trait among those living with PCOS, which also leads to type 2 diabetes over time. Before turning 40, over half of the people with PCOS will be diabetic or pre-diabetic.
Those with PCOS also tend to have higher rates of eating disorder behaviors. Compared to those without PCOS, people with PCOS also have an increased risk of high blood pressure, which is the leading cause of heart disease and stroke.
Sleep apnea is another common comorbidity of PCOS, meaning while sleeping, people experience repetitive momentary interruptions to their breathing. It is common for those with PCOS to also be overweight or obese which can cause sleep apnea. Sleep apnea is also a risk factor for heart disease and diabetes.
People with PCOS also commonly suffer from mental health challenges like depression and anxiety. Many of these comorbidities further increase the risk of endometrial cancer among those with PCOS. One population-based cohort study based in Taiwan found that people with PCOS were 17.7 times more likely to develop endometrial cancer.
Treating PCOS
Currently, there is not a cure for PCOS, though there are ways to help manage its symptoms. The treatments for symptom management are individual and vary based on the symptoms a person experiences, their risk for long-term health problems, and their intentions to have children. Usually, people with PCOS need to combine medication with lifestyle methods like nutrition to effectively alleviate their symptoms.
Research About PCOS Causes and Treatments
While we know a lot about who is susceptible to PCOS and what types of symptoms they experience, there is still no concrete explanation as to what causes it. Researchers continue to explore PCOS to better understand the condition, its potential causes, and its potential treatments. Currently, there is research about PCOS that considers genetics, environmental exposures, ethnic and racial factors, medication and supplementation to restart ovulation, a link to obesity, and health risks of children of people with PCOS.
Clue collaborator and PCOS researcher Shruthi Mahalingaiah, MD, MS’s has published recent research focusing on environmental exposure and polycystic ovary syndrome (PCOS) incidence, severity, metabolic sequelae, and risk modification.
Organizations Providing Support and Treatment for PCOS
The leading nonprofit for support of people with PCOS is PCOS Challenge: The National Polycystic Ovary Syndrome Association. They advocate and organize support on a global scale, and they serve over 52,000 members. PCOS Challenge is engaged in supporting those with PCOS through their website, online support network, events, grants, their PCOS Challenge television and radio shows, their PCOS Challenge Expert Series, local support groups, and health screening.
Startups like Irregular Cycles have created unconventional digital tools to fight PCOS symptoms. With infertility being the most common result of PCOS, it is an area where supporters have rallied to find a solution. The Irregular Cycles app helps people who have PCOS get pregnant through symptom and sex tracking, as well as mood, medication, and sleep monitoring. The app is available to people in and outside of Sweden, and they are currently testing their beta version, which can be downloaded on their website.
This month, different organizations are hosting all kinds of virtual events to support the PCOS community. For those interested in learning more about PCOS in general or finding support online, here are some Instagram accounts that are worth checking out:
@cystersgroup is a UK-based charity that strives to change the narrative on reproductive and mental wellbeing while also increasing healthcare equality and accessibility for marginalized groups. For PCOS Awareness Month, they are sharing inspirational first-hand experiences with PCOS from their Cysters all over the world.
@endoandpcosbb is a Barbadian charity that seeks to increase awareness about endometriosis and PCOS. This month, their ambassadors are sharing their own personal experiences with PCOS while empowering people with suspected or confirmed PCOS to trust their instincts and keep fighting for adequate care.
@nutrafemmerx is run by Dr. Anna who is a PCOS hormone coach sharing tips, information, and encouragement.
@the.pcos.nutritionist is run by registered nurse and university-qualified nutritionist Shahzeen Baig. She provides a refreshing and realistic perspective on holistic techniques that people can use to manage their PCOS symptoms while also raising awareness about PCOS and offering support.
@thepcosgirls is run by Brigitte and Mel who share all things from their experiences and tips about PCOS, to reminders of how we can support one another. This account also has a corresponding podcast called PCOS to Wellness.