I was formally diagnosed with PCOS when I was 18 years old. I shared my PCOS story once I realized that there are many people facing the same struggles as I do and that do not have a support system. There is also a serious lack of knowledge on PCOS and other chronic illnesses, and this knowledge is especially crucial in making legislation dealing with the healthcare system, medical insurance, and the interaction of the two, acquiring access to the appropriate healthcare facilities, and acquiring access to medical insurance. My first post gained a lot of attention and I got a lot of encouraging comments (thank you <3) as well as questions concerning the condition, all of which I am very grateful for. This post is dedicated to answering the top 12 questions that I have been frequently asked about PCOS. Don't forget to tell a friend. Sharing is caring.
NB. Mentions of male/female refer to biological sex and not gender identity. Sex and gender identity are different things. Male/female here is in reference to male/female human sexes.
1. What is PCOS?
PCOS stands for polycystic ovarian syndrome. It is a serious endocrine disorder among female persons of reproductive age. 1 in every 10-15 females suffers from PCOS, so it is pretty common, but it still remains to largely be undiagnosed/misdiagnosed. It is a multisystem disorder. There is a genetic and an autoimmune component to PCOS, and the disorder has some aspects of a metabolic disorder. The Rotterdam criteria divided PCOS into four types:
i) classic polycystic ovary PCOS (chronic anovulation, hyperandrogenism, and polycystic ovaries).
ii) classic nonpolycistic ovary PCOS (chronic anovulation, hyperandrogenism, and normal ovaries).
iii) non-classic ovulatory PCOS (regular menstrual cycles, hyperandrogenism, and polycystic ovaries).
iv) non-classic mild or normoandrogenic PCOS (chronic anovulation, normal androgens, and polycystic ovaries).
Some people divide PCOS into different types depending on the perceived cause. These are: insulin-resistant, inflammatory, adrenal, pill-induced and hidden cause PCOS, depending on the perceived cause of the condition. Insulin-resistant PCOS is cited as the most common one of these.
PCOS has also been described in males (pdf), especially males related to females with PCOS. Not much about this is known, and research into this is still ongoing. PCOS was originally known as Syndrome of Stein or Stein-Leventhal Syndrome, and that is what it is called when it is found in males because PCOS denotes people who have ovaries.
2. What are the common symptoms of PCOS?
These are: ovarian cysts, weight gain, irregular periods, heavy periods, painful periods, severe acne, bloating, excess facial and bodily hair, male pattern hair loss even on females, infertility, anxiety, depression, and insulin resistance.
3. Why do females with PCOS have irregular periods?
To understand why this is, one must first understand how the menstrual cycle happens. The brain is responsible for triggering and regulating the menstrual cycle through the actions of the hypothalamus and the pituitary gland.
The hypothalamus is a structure in the brain that controls a lot of important functions such as thirst, sleep, hunger, temperature, and mood. It's like the "control room" of the body, and it adjusts the body's homeostasis i.e. internal balance. The hypothalamus also regulates the pituitary gland – a pea-sized structure in the brain known as the "master gland" because it controls several other hormones in the body. The hypothalamus releases the gonadotropin releasing hormone (GnRH) which triggers the pituitary gland to release luteinizing hormone (LH) and follicle stimulating hormone (FSH). LH and FSH stimulate the ovaries to produce progesterone and oestrogen.
The menstrual cycle starts when the brain sends LH and FSH to the ovaries. A big surge of LH causes the ovaries to release an egg (ovulate). The egg goes down the fallopian tube to the uterus. Progesterone causes the uterine lining to thicken in preparation for pregnancy. Oestrogen controls the growth of the uterine lining. If the egg is not fertilized, it is expelled together with the uterine lining. This is menstruation.
When something goes wrong anywhere along the way, there will be a problem. If GnRH is not released, LH and FSH will not be produced properly and menstruation will not happen. In females with PCOS, LH levels are often high when the menstrual cycle starts. Because the levels are already high, there is no LH surge. Without the surge, ovulation does not occur. No ovulation = no period. When the egg is not released, it is held in the ovary, leading to the cysts in this condition (the cysts are not actual cysts but follicles which failed to mature; "cysts" here is a misnomer). Females with PCOS may miss their periods for months at a time.
4. How does testosterone come about in PCOS?
Both males and females have testosterone, though society insists on calling it a "male hormone" because it is typically found in higher levels in males. "Female hormones" are also found in both males and females. In females, testosterone is made in the ovaries by cells supported by LH. Majority of the testosterone produced in females ends up being converted to oestrogen. In males, it is produced in the testes in a process triggered and regulated by GnRH from the hypothalamus and LH from the pituitary gland. A small amount is also produced by the adrenal glands in both sexes.
One feature of PCOS is insulin resistance which means that your cells are not responding to insulin. Insulin is a hormone made in the pancreas. Carbohydrates are the body's main source of energy, whereby they are digested to glucose, and insulin signals your cells to respond to and intake glucose. When your cells don't respond to insulin, the pancreas responds by producing more insulin. In females, high levels of insulin cause the ovaries to make more testosterone. High testosterone in females causes symptoms such as severe acne, increased facial and bodily hair, and male pattern baldness, amongst others. High insulin also interferes with GnHR production and it affects LH and FSH as well, amongst other numerous effects. In males, it is low testosterone that is linked to insulin resistance.
5. What leads to weight gain amongst people suffering from PCOS?
Insulin resistance is mostly blamed for this. As previously mentioned, carbohydrates are digested into glucose and absorbed into cells by the action of insulin. Being insulin resistant means that your cells are not responding to insulin so the glucose remains in circulation and is eventually stored as fat in the adipose tissue. Insulin resistance, if not treated, can progress to prediabetes then to diabetes because the pancreas will keep on making more and more insulin as the cells become more and more resistant, and more and more glucose will remain in circulation in the blood (high blood sugar) because it is not entering the cells. Insulin resistance is also a predisposing factor of obesity. Insulin resistance can be found in both "overweight" and "normal weight" women with PCOS.
6. What health complications result from PCOS?
Prediabetes/diabetes, abnormal cholesterol and triglyceride levels, heart diseases, stroke, infertility, endometrial and ovarian cancers, obesity, and sleep apnea.
7. Is there a cure for PCOS?
Not yet. It's a chronic illness. You live with it while managing it through medication and other means. In some lucky few, the condition leaves after a while. In most though, that doesn't happen. In some, surgical intervention may be needed.
8. How do I know if I have PCOS?
If you're experiencing any of the symptoms mentioned, you should see a gynaecologist for diagnosis. Despite PCOS being a multisystem disorder affecting many different organs, it is often left to gynaecologists and the information they have may often be inadequate. There are many PCOS advocacy groups working towards solving this issue so that PCOS patients can have adequate care but the current situation is highly wanting.
9. Does everyone who suffers from PCOS have ovarian cysts?
No. Although some PCOS symptoms may arise from the cysts, there's a significant portion of people who experience all this but do not have the cysts. Also, remember that ovaries are victims themselves, i.e cysts are a symptom, not the reason.
10. What tests should I anticipate when getting checked for PCOS?
Hormone tests, specifically for reproductive hormones and insulin. A ultrasound may also be done to check for cysts. If seeing a gynaecologist, be sure to insist that they check your insulin and glucose profile (glucose tolerance test, fasting blood sugar, random blood sugar, HbA1c, etc) because they'll often overlook/ignore that aspect of the disease and focus on the reproductive side only. Be prepared to answer questions about your periods, weight, eating habits, hair, and medical history, to name a few.
11. I have been diagnosed with PCOS. What next?
A treatment plan. Ideally, this plan should involve you, your general doctor, the gynaecologist that diagnosed you, an endocrinologist, and a nutritionist (depending on other arising issues/complications, other doctors can come in). The plan should be suited to your needs, so don't be afraid to speak up and ask questions. PCOS treatment plans revolve around medication and nutrition, as well as some form of exercise.
12. How do you deal with your PCOS?
I take Glucophage, also known as Metformin, for my insulin resistance and hyperandrogenism, and I try to maintain good nutritional habits. Good nutritional habits means not skipping meals, regularly eating foods that your body agrees with (e.g. if a food causes you to bloat excessively, just avoid it), not eating too little or too much, and eating nutritious meals. Because I had relatively good eating habits before the diagnosis, this part hasn't been that hard for me. Some have fallen into eating disorders as they try to achieve good nutritional habits, which is why it is important to lias with the nutritionist/dietitian and to have support from people going through the same thing as you. I also keep fit. Contrary to popular opinion, it takes very little to keep fit. In fact, a 30-minute walk each day is enough to keep you fit. So, if you can, walk. Additionally, I take birth control pills to maintain my regular hormone levels and my regular period cycle, and to help alleviate heavy, painful periods. N.B. Consult with your doctors before taking any medical action.
Update 2018: I no longer take Glucophage as I currently no longer have insulin resistance or hyperandrogenism ("remission"). I had undiagnosed migraines with aura and so I had to stop taking the combined pill when the migraines were diagnosed because of the increased risk of stroke (read about this here). Luckily, I am back to my regular cycle, even without the pill.
Update 2019: Uh-oh, remission's over. It's back.
PS: You may need to do liver function tests and B12 level tests while on Glucophage. B12 and folic acid supplementation may be needed as Glucophage may interfere with your B12 levels. Consult with your doctor on this.
To find out more about PCOS, visit the PCOS Awareness Association.