September is Polycystic Ovarian Syndrome awareness month. PCOS is a very common disorder that affects how a woman’s ovaries function. We interviewed some people with the condition to get some insight as to how they got a diagnosis, manage their symptoms, and how it affects their lives today.
Worldwide, PCOS affects 6% to 10% of women, making it the most common endocrine disorder in women of childbearing age. Although many women only seek diagnosis when they are having trouble conceiving and so equates to long periods of undiagnosed PCOS with others never seeking treatment at all meaning the actual figures may be higher.
“I don’t know if I’m infertile, never tried to conceive. I’m on hormonal contraceptive so have no periods.” – Nat
There are 3 distinguishing factors of PCOS.
- You will most likely have irregular periods.
- There will be an excess of Androgens which are considered ‘male’ hormones although are present in both sexes, this can result in unwanted facial or body hair growth.
- Lastly, and it’s namesake, you will have polycystic ovaries.
The NHS would require you to have 2 of these 3 to be diagnosed. An early indication of PCOS is acne as it is a sign of elevated androgens in your system.
“It took 10 plus years to get a diagnosis.” – Victoria
Something that Mooncycles is prioritising is using our collected data to build a research database that could help to bring down these diagnosis times. In the small group of people interviewed for this article there have been answers from 1 month to 10+ years diagnosis time.
This is probably due to location and severity of symptoms in conjunction with other factors such as preexisting medical issues and whether you are aware of the symptoms yourself. By building a clearer picture of your symptoms, changes and excesses will become more evident to you and your healthcare providers and medical researchers.
What is PCOS?
The term cystic is slightly misleading as it refers to fluid-filled follicles that contain developing eggs not a new cyst structure. These follicles are present in all ovaries. Without the excess of androgens, 1 of the 20 or so eggs that start to mature each month would be released to be fertilized. However, with prolonged high levels of androgens, this process doesn’t occur because the hormones inhabit the growth and development of the eggs. Over time the follicles will become enlarged as they fail to burst.
This causes a knock on effect in the production of Luteinising hormone (LH) and then Progesterone which is released by a burst follicle called the Corpus Luteum. If ovulation doesn’t occur this has a negative effect on the chances of conceiving. The lack of progesterone is what causes a missed or late menstrual period.
As you get older your cycle is more likely to regulate and so there is a chance of conceiving later in life. People with the condition also tend to hit menopause later.
Unfortunately, PCOS isn’t just contained in the ovaries and affects overall health in a much bigger way. Researchers are learning there may be a lesser version where the ovaries still function and cycles are regular.
“[My] periods stopped, and had an internal exam which showed up cysts on ovaries. After I came off the pill they’re now back to normal. I’m not 100% convinced by the diagnosis as they say you have to have 2 out of 3 symptoms. I.E. diagnosis by process of elimination.” – Ceri
Diagnosis and Treatment of Polycystic Ovarian Syndrome
PCOS carries a fairly high risk of diabetes because it is related to high levels of insulin in the body. Insulin is the hormone that regulates blood sugar and sufferers are resistant to its action and so over-produce it. Obesity is linked to this resistance and can be a contributing factor in symptoms and treatment.
Diagnosis should take the form of a physical examination, blood tests to check your hormone levels, and a ovarian sonogram/ultrasound. After your diagnosis, check your blood glucose level, cholesterol levels, and insulin levels to plan for future complications.
“[Diagnosis took] less than a month from the time I went to the pediatrician’s office. They ordered ultrasounds due to severe abdominal pain and found cysts. Referred to the pediatric gynecologist for diagnosis.” – Lauren
There is currently no cure for Polycystic Ovarian Syndrome. Although with treatment most women can get pregnant. Tackling obesity is usually the first chance in easing symptoms as will maintaining a healthy, balanced diet.
How food impacts your Endocrine system.
The suggested diet focuses on balancing the Endocrine system: the chemical messenger feedback loop which sends hormones around the organs from glands.
This diet regulates insulin and so it is best to avoid refined carbohydrates completely like sugar and white flour products such as pasta, pastry, and bread. Boost your protein and good fat intake with nutrient-rich, preferably organic, produce. Try to avoid food that already contains hormones like meat and dairy. Soy products contain all essential amino acids and a wide range of vitamins and minerals, although these become less the more the product is processed: edamame (whole soy beans), soy milk, tofu, and tempeh contain whole soya. Eat vegetables, nuts, and seeds, flax/linseed, olive oil, fish, and seaweed. Half a teaspoon of cinnamon a day can restore insulin sensitivity.
A healthy gut is vital and the good bacteria in there need fiber to survive, soluble fiber from vegetables is the best for your microflora pals! A human-compatible strain of pro-biotic could really help to aid digestion and the removal of spent hormones. Avoid strep faecum as it isn’t easy to remove if it gets into the bloodstream.
“I take a prenatal, biotin, and turmeric as supplements, follow a low-carb diet and fill my meals with green leafy veggies and exercise 30 minutes a day. I believe if we take care of our body, it will one day return the favor.” – Courtney
Supporting liver function with herbs and nutrients can help with the breakdown and excretion of hormones. Milk thistle, dandelion root and the fringe tree can all aid the liver. Pair with artichokes, avocados, and beetroot but try and avoid using these herbs if planning a pregnancy or you are already pregnant.
“I cure my body through intuition. I lost 35 kg, changed my lifestyle and for example, 1 only have 1 cyst left and my period is every 28 days.” – Lingy
Medicine and Supplements to support anyone with Polycystic Ovarian Syndrome
Supplements for PCOS include Agnus castus to raise progesterone and Saw Palmetto which lowers estrogen receptors and discourages a form of testosterone that is known to exasperate symptoms of PCOS. These can also be found in combination supplements.
Medications can be used to combat specific symptoms such as hair growth, irregular periods or infertility. Hormonal contraception or progesterone is given to try and combat an irregular cycle and hair loss or excess growth.
“My doctor wants me on birth control. As a non-binary person, I’m not interested in introducing oestrogen into my system. Plus I don’t like the way birth control makes me feel. Otherwise they pretty much just offer weight loss as a solution – the fatphobia and queerphobia in the medical world is rough.” – Bee
Metformin is a diabetes drug that has the potential to increase ovulation and it improves insulin resistance. Clomifene is a fertility drug that balances hormones and increases ovulation, and is offered to those who are trying to conceive. Eflornithine is a cream that slows hair growth but doesn’t fully stop it so is recommended to be used with another hair removal treatment.
“I changed my lifestyle and currently use Arbonne’s nutrition program which taught me healthy, clean eating. I reduced my dairy & gluten intake. Prior to this I had anxiety, was overweight, no periods, migraines, acne, excess hair on upper lip, and constipation. I now have a normal period & no symptoms. I do not take medications.” – Lauren
Medical treatments to help with PCOS
There are two types of surgery doctors may suggest. An Ovarian Wedge Resection calls for the removal of a part of the ovary. This is a dated technique and has a high risk of complications and leaving scar tissue behind.Scar tissue can inhibit conception further, because of this it has been largely forgone for the second option.
These days if you have exhausted all other possibilities a surgery called Laparoscopic Ovarian Drilling (LOD) may be offered. Drilling sounds horrific, but it aims to return you to a regular cycle by using heat or laser. The drill destroys the tissue in the ovaries that’s producing androgens, such as testosterone. It is usually a last resort as its effects may only last for six months. None of the people we interviewed have been offered or undertaken surgery.
Light treatment helps synchronize the timing of estradiol and progesterone throughout the cycle to re-establish a period. There is some anecdotal evidence that moonlight plays a part in this {we would love more research on that!} so sleeping with your curtains open can help. To try: sleep with a low-intensity light {around 2-3 watts} at the foot of your bed 4 or 5 days before ovulation for 3-5 cycles. Using full-spectrum lights during the darker months can also boost mood and regulate the endocrine system.
Remember, you are not alone.
Going forward work with your doctor to manage symptoms, fertility if you try to conceive, and monitor any changes in your condition. Keep track of your symptoms and periods with the Agenda Period tracker to help you advocate for yourself.
“I’d like to get into a chiropractor, get massages or try acupuncture; but alternative treatments are expensive and come out of pocket. I’m a young professional who is barely making it by.” – Bee
Polycystic Ovarian Syndrome seems to be hereditary so if your sister or mother has it you are also at high risk. Diabetes can also be hereditary so this is a known connection that medical practitioners can factor into diagnosis and treatment.
If you take Metformin or oral contraceptives, take a B12 supplement as the drug can interfere with the absorption of the vitamin. A lack of B12 can cause permanent and serious problems.
Women with Polycystic Ovarian Syndrome are at a higher risk of developing obstructive sleep apnea. This is due to the influence of androgens affecting sleep receptors in the brain, the same reason men are more likely to snore than women.
PCOS is a complex condition. More research needs to be done to further our understanding of the causes and cures for hormonal imbalance and its implications.
Huge thank you to all the interviewees!
REFERENCES AND READING:
https://www.pcosnutrition.com/facts/
https://www.webmd.com/women/do-i-have-pcos#2
https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/
http://www.pcosnutrition.com/aging/
https://www.bda.uk.com/foodfacts/polycystic_ovary_syndrome_pcos
https://cks.nice.org.uk/polycystic-ovary-syndrome#!scenario