Before writing this, I found myself asking, what is the best way to write an informational piece about a chronic condition that is unique to every body, manifests itself in different ways, displays a wide range of symptoms, and doesn’t have a specific cause or cure?
Do you start with googling “What is polycystic ovary syndrome”, just to get the “facts”? Do you drag yourself through WedMD, Mayo Clinic, and Hopkins Medicine, moving through cold, abstract medical jargon that tells you that what you are experiencing doesn’t have a cause or a cure?
I felt like the only place to start from someone’s lived experience. Here’s an excerpt from writer Tiana Clarks “PCOS. POC. Poetry and Pilates” where she describes her entry to having PCOS:
“My period stopped. My panic attacks flared. My hair fell out and I couldn’t sleep. I gained 40 immovable pounds in three months. I was stuck in a seemingly endless loop of salt and sugar and sadness, punctuated by migraines, brain fog, and weird body pains. My jumbled hormones made me manic one day and depressed the next. I could not control my rage. Language was my life, yet I did not possess the words to know what was wrong with me.”
So, let's begin our discussion with PCOS here, prompted by Tiana’s words, and remind whoever is reading, that chronic conditions like this, bleed over into all realms of existence.
They affect our emotions, our day to day interactions, our relationships and sometimes we are at a loss with how to describe the condition and how it makes us feel. So, wherever you can, be gentle.
The Down Low
So what is happening in someone’s body who has PCOS?
PCOS is a common endocrine syndrome, meaning that it relates to the glands that secrete hormones directly in the blood. It affects people with uteruses predominantly of childbearing age. Someone with PCOS is experiencing a hormone imbalance that occurs when the ovaries produce more androgens (the male sex hormone) than considered normal. This then affects the endocrine and metabolic systems in someone’s body.
Fact: Individuals with PCOS have a harder time producing insulin.
Fact: PCOS can be genetic, so check out that family health history if you can.
How Common is PCOS?
Very common. PCOS affects about 8 % to 13% of women worldwide according to a 2021 study completed by University of Windsor). In Canada, it is estimated that 1.4 million women have PCOS. So, nearly one in 10, or sometimes as high as one in five, uterus holders live with PCOS, which has many physical, and emotional impacts, which can shift and hinder the quality of someone's daily life.
What Are The Symptoms of PCOS?
We understand that everyone’s body holds this condition in different ways and so it’s near impossible to list all the symptoms here. If you don’t see your symptoms here but feel or know you have PCOS, we see you.
To keep it simple, individuals with this condition usually experience symptoms that fall into three main groups: Reproductive, Metabolic/Endocrine and Psychological/Mental Health.
Reproductive symptoms include irregular or absent periods, fertility related concerns, or polycystic ovarian morphology.
Metabolic/Endocrine Symptoms include elevated testosterone which directly links to hirsutism, a condition in women that results in excessive growth of dark or coarse hair on face, chest and back. It also can mean oily skin, acne and alopecia, which is loss of clumps of hair.
The psychological/mental health symptoms are ranging and unique to each individual, however, the condition affects mental health on both a situational and chemical level. On a situational level, a PCOS patient has symptoms that may make them feel uncomfortable with their body and appearance, which can lead to anxiety, depressing and body image issues.
In addition to that, the hormonal imbalances that PCOS creates in someone’s body, have a neurobiological affect on the brain. Those excess androgens have been proven to cause and be linked to depression.
An important reminder that with PCOS, it’s rarely just one or the other but a complex combination of symptoms and affects.
Why is Diagnosing PCOS so difficult?
While the list of symptoms is extensive, how each individual displays their PCOS symptoms is unique and impossible to compartmentalise. For the former NFL cheerleader Natalie Nirchi, as she describes in the article “When Missed Periods are a Metabolic Problem”, she was diagnosed with PCOS after she stopped menstruating at age 17.
Initially, she did not show any physical symptoms, and all of the signs showed up through blood work and ultrasounds. However, when she attended college, she entered a new phase of her PCOS which included shooting pains in her pelvis, mood swings and rapid weight gain despite her rigorous exercise routine.
Aside from the complexity of the condition, just like so many chronic conditions which affect uterus holders, PCOS doesn’t get the adequate research support and funding it needs.
Which directly affects the process of getting diagnosed. Only a small number of researchers receive funding to study PCOS and even when funding is given, it is given to study the infertility side of the disorder, which only benefits individuals with PCOS who are concerned about conceiving.
Daniel Dumesic, a reproductive endocrinologist, believes that due to the complex metabolic, hypothalamic, pituitary, ovarian and adrenal interactions that define the condition, it’s hard to find researchers and specialists who study PCOS.
Dumesic explains, “When any condition crosses disciplines and doesn't have a full investment, it often falls through the cracks. There are elements of reproduction in PCOS, but most reproductive endocrinologists mostly do in-vitro fertilization and are not necessarily interested in metabolism. Medical endocrinologists, who are mostly interested in metabolism, aren’t usually interested in reproduction and ovarian function”.
Dumesic point is crucial. In western medicine practices, which isn’t at it’s core holistic and interdisciplinary, diagnosing and informing patients about their PCOS in a well-rounded way that is informative and supportive, just isn’t happening.
So then how does someone who is experiencing symptoms get diagnosed with PCOS? And if I am diagnosed, how do I find continual support in and outside of the medical community?
We understand that getting diagnosed, as described above, can be nightmarish. Doctors may dismiss your symptoms or misdiagnose you due to lack of research and knowledge around PCOS.
You may be experiencing symptoms that are less common for PCOS, and due to the lack of information, you might not feel confident to pursue getting diagnosed. You may just be tired of your body. You may, for a variety of reasons, feel like you can’t trust the medical system.
We hear you and see you.
Supportive and sustainable things you can do to move through your PCOS diagnosis
1.Lean On Fellow PCOS’ers
If anyone knows best about PCOS, it’s people who have it. Reach out to people you know who may have PCOS. They may have advice about specialists to see, remedies to relieve pain and just be someone to lean on when your symptoms are overwhelming or you are hitting obstacles in your ongoing treatment.
A great resource is the PCOS Awareness Association’s MY PCOS Team, which is a free social network that allows you to connect with other people with PCOS, and share experiences and support.
From there, you find that reproductive endocrinologist or other specialist in your area who finally knows what they are doing.
What are some things I can add into my lifestyle to help move through my PCOS?
There is no one thing that is going to work for everyone, and somedays, we may not have the energy to shift our lifestyle upside down (which is okay!) But there are definitely lifestyle adjustments and additions to try to ease PCOS symptoms in our body. But most importantly, find what works best for you. The word is ANTI-INFLAMMATORY.
PCOS havers can experience chronic inflammation on a variety of levels.
On a topical level, somedays cramp cream is packed with calendula, and arnica, as well as castor oil which promotes circulation to the ovaries and decrease inflammation often associated with PCOS.
2. Get Radical Rest
This is a loaded suggestion, as we know it’s hard for people with chronic pain conditions to feel entitled to rest. However, we are just here to gently remind you that you deserve rest whenever YOU feel you need it and only you. Quality rest and sleep help regulate cortisol levels to balance your hormones. With a condition that impacts so many areas of your health, in addition to all the amazing things you are accomplishing in your life and community, your rest is vital to your health and to your community.
With all that said, there’s a lot to PCOS that we are still discovering, still trying to battle with, and still trying to understand.
So whether you have PCOS, are in the process of getting diagnosed, or just trying to educate yourself on chronic conditions, give and find support where you can because you are so worth it.
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