PCOS affects 1 in 10 women. Why then is it still shrouded in mystery and misinformation?

PCOS (Polycystic Ovarian Syndrome) is a hormonal disorder that affects women of reproductive age that not only takes a toll on their physical health but their mental health as well. Once unheard of, PCOS is slowly but surely entering mainstream discourse, offering countless women hope and support.

The Clinical Snapshot
So what exactly are Polycystic Ovaries? Typically, a woman’s ovaries hold immature eggs. These eggs are contained in follicles, and once they mature, are released mid-cycle in the hopes of being fertilised. In the case of women with PCOS, the eggs remain underdeveloped and are not released and the follicles remain in the ovaries as cysts. “There are two different entities: one is Polycystic Ovaries and the other one is Polycystic Ovarian Syndrome. Just because a woman has polycystic ovaries does not mean that the woman has Polycystic Syndrome. A syndrome is a collection of symptoms of which the polycystic ovary is one part” explains Dr Dhammike Silva, Consultant Obstetrician and Gynaecologist, and Senior Lecturer, Faculty of Medical Sciences, University of Sri Jayawardenenpura. 

Photo: Dr Dhammike Silva

“A woman can go through life not knowing that she has polycystic ovaries and without any symptoms presenting, but some will have physical symptoms, which will make them seek medical advice” Dr Silva expounds, adding that these include reasons such as menstrual disturbances, increase in androgens (male hormones) leading to hirsutism (excessive hair growth in the face and body), oily skin, acne, thinning hair on the scalp, and weight gain, as well as mood swings and infertility. While these are some of the presenting problems for PCOS, there are certain criteria to be met in order to diagnose PCOS: Polycystic ovaries, menstrual disturbances and excess androgens.

Studies have posited that PCOS can also lead to increased insulin production. “It has been found that polycystic ovaries produce factors which antagonise insulin. So drugs used for diabetes such as Metformin can be used for these women. Lots of studies have been done, but they have not shown a significant benefit. However, they do increase the chances of pregnancy for women with PCOS and continuing Metformin up to 12 weeks of pregnancy will reduce the risk of miscarriage. So it is very widely used in symptomatic polycystic syndrome”. 

Treating the Symptoms
Although PCOS cannot be cured, there is certainly hope for women as its symptoms can be treated and managed. “Treatment should always be patient-oriented. We need to address what the patient requires and there is no blanket treatment for everyone. So depending on their requirement, we would recommend general health advice and lifestyle modification. It helps reverse PCOS symptoms to a large extent because weight gain increases the chances of polycystic ovaries. This fits everyone irrespective of their presenting problem” Dr Silva states. For those with menstrual disturbances, in addition to lifestyle modification by way of weight loss, reducing food intake, and exercise, doctors often recommend hormone tablets. “The cheapest is the combined oral contraceptive pills which is a low dose and helps mimic a normal cycle. When the body gets external hormones, the brain is tricked into thinking that the ovaries are producing them and stops sending stimulating hormones to the ovaries. So the ovaries are on hold for the duration the pill is taken”. For this reason, the pill is only recommended to those not looking to conceive during the time frame.

Oral contraceptive pills are also used in cases of oily skin, acne and hirsutism. “Because the ovaries are inactive from taking the pill, the androgens in the body will be reduced, and over a period of time, the symptoms will reduce as well”. Doctors also prescribe anti-testosterone pills that counteract the excess testosterone in the woman’s body. In the case of hirsutism, it acts on hair follicles and takes 7-9 months for the hair follicles to shut down. So one has to take them consistently for more than 6 months so that the growth of hair follicles is retarded. However, anti-testosterone can’t be used if liver functions are not good”.

In the case of infertility problems, medical practitioners prescribe medication to induce ovulation, do a scan consequently to see if the eggs are developing and then given an injection for the eggs to be released. “If all else fails, test-tube babies are an option”. Dr Silva adds that a surgical option is also available - Ovarian Drilling - which can be done for patients who are resistant to ovulation-inducing medication. 

Finding Solace and Support in a Sisterhood
"I was diagnosed with anaemia when I was 13 so I had severe periods where I was blacking out. I had difficulty conceiving and then I had a miscarriage. When they did the scan they told me I have polycystic ovaries" Niro Perera explained. "I didn’t even know what it was and no one knows what causes PCOS. Even my gyno, who is one of the best in the country, still couldn't tell me about it. He told me 'if I were you, I’d have kids soon’. After my second child, my periods completely stopped for about a year, and then I bled for about 6 months. It was horrendous and there is not much information out there about this. I was very skinny and since my first was born premature, they gave me hormones so that my second wouldn't be premature as well. I gained about 35kilos! So I went to my GP who said I am anaemic because I have heavy periods, and I have heavy periods because I have PCOS. It's a vicious cycle. I was then sent to an endocrinologist and I came out of that man's office crying because he said ‘you’re 5 feet tall and 83 kilos. You should have thought about this when you were 70 kilos’. So again, no help, no treatment. All they say is lose weight. And when you have PCOS, you don’t ‘just lose weight’. You can starve yourself and you won't lose". 

Determined to find a solution, Niro travelled to Singapore where she met a holistic practitioner. "She put me onto intermittent fasting. Between that and a juice fast, I dropped 23 kilos in about 8 months and my periods went back to normal. But it's not realistic and you keep yo-yo-ing. I would gain about 10 kilos and I would lose it again. No matter who I went to, nobody had a clear solution to it. They will put you on birth control and ask you to lose weight. Only people who live with it know how difficult it is".

In order to offer women a support system she never had, Niro recently started a support group on Facebook - Siztas PCOS Support Group. The private group is a sisterhood, offering women with PCOS a safe space to share their troubles, their victories and everything in between. “We have women posting ‘Is this normal? Does it happen to you?’. It makes you realise you are not alone in your fight. Besides, it’s not just physical stuff. It’s also for the mental stuff. Sri Lankans lack tact, and say things like ‘Oh my God, you’ve gained so much weight’. And it’s like, no, I’m not overeating. Sometimes we eat so little and there’s no change on the scale. So many shamed by their own family. So we do our best to support each other”.

The Daily Mirror Life spoke to multiple women with PCOS who shared their experience living with it, their struggles, and advice to other women.

Mary Anne*
Having PCOS is like a crazy tornado of emotions, one moment you hate yourself and next moment you are happy. Sometimes you find yourself despising how you look, wishing you looked like others... People make comments and have certain feminine expectations. For example, for me, I have body hair, a tummy, darkness in my neck and joints and irregular periods. People say ‘just lose weight’ but to lose weight is so much harder. It's like struggling and trudging through the densest of mud. It's so hard to lose weight. Sometimes you feel like a prisoner in your own mind, whilst it's terrible physically. Emotionally, mentally it’s much worse. And the worst thing is doctors try to cure the physical aspects and recommend diets etc but very few understand how much worse the mental impact is. It's really helpful now as more women are aware and speak up. Initially, you feel as if you are the only one.

C. Nanayakkara
Well I can list out a few major things I experienced. 1 - My body started changing after turning 27 and I had no clue, my 26 waist went to 30 and unexplainable weight gain, mood swings led me to google symptoms. 2 - Periods are horrible. I feel confused at times even after getting my diagnosis from an endocrinologist and a gynaecologist and it still feels like walking into a great big unknown. 3 - I have to be really careful with my diet, which I do, but it's difficult around some people who don't have a clue about it. I haven't faced any negative comments, at least direct ones. But the pressure of reproduction is there.

Rachel

In March 2019, I was diagnosed with PCOS and Endometriosis. Before this discovery, I was never into health and fitness. I was more of an "I love myself regardless of my size". After the doctor explained the possible future side effects, it was hard to stick to that quote. I would get severe acne almost on a daily basis, I gained almost 15kg within 12 months and it got worse with the hair loss. I have never felt so unattractive my entire life. I avoided going out because I felt that ugly. That’s when I decided to change my ways (with a little help from a friend). I started working out, mostly cardio and I began eating better. I watched many influential videos to keep myself motivated. Now, my confidence has been restored. I try to eat right most of the time, and I gym at least 4 times a week. This new lifestyle has changed my life. I try to maintain an active social media life, through which I try to influence others to stay fit, healthy and happy.

Aysha
I knew that I had PCOS only after my babies, both 2 years apart. I had gained nearly 100 pounds and it was a disaster. I worked out but didn’t lose any weight. I was put through fad diets and medication and had to deal with uneven hair growth on my chin but these changes didn’t help me. 7 years after my second born, I followed a no sugar, no-carb diet for nearly 8-10 months which helped me even though I didn’t work out. I was too conscious to go to a gym being obese. I still watch the food I eat and see that I have my protein and vegetables before I have my carbs. I don’t cook anything out of the norm at home. I just serve the right food and know my portions. I started with 101kgs and I’m 75kg now. It took me 2 years to get here.

Lizette
I got diagnosed with PCOS in Holland. So two years after giving birth to my daughter (she is 9) I still not had my period back. That’s why I went to the doctor. They did research and they give me the diagnosis of PCOS. They give me the option to use the anti-conception pill to treat it. I didn’t accept it because I wanted to have a second child. So I started with fertility treatments in the hospital. I decided to treat myself in a natural way. Actually, I changed my lifestyle. Also, I used a lot of supplements given by my brother (orthomolecular doctor). I think more or less after 6 months I got my period back. I treated myself with changing my diet and sport level and got my period back. I even give birth to my son last March! My diet is without any refined sugars, no gluten and no dairy products. I eat only unprocessed food. For sport, I started to practice yoga and strength/weights sports instead of long-duration sports. My hormones become balanced again and I got my period back.

Shehani*
I got comments, of course. People always ask about the weight and the comments can be sometimes very hurtful. I’m used to it now. Facial hair, weight gain and excessive bleeding and depression are the symptoms that I went through. When people commented about my weight, I used to cry and buy clothes in size Small. Sri Lanka was a nightmare in the 90s. I always got plus size clothing from Australia. Even the Doctors used to say "you’re overweight and you need to lose weight". They never understood how difficult it was and how I was fighting with mood swings and cravings.
Eventually, I lost 20 kg and I have gained it back. As soon as I stop exercises and go wild with food, the weight piles back again. It’s a constant fight and it’s no fun at all. I got married when I was 19 and that time PCOS was treated like a genetic disease and my higher studies and everything collapsed. Now I have stopped all treatments, and I only take thyroxin. I have been bleeding on and off for the last two months. My mum keeps saying that I must go and see a Gynecologist but I keep refusing and postponing. The reason is that the doctor will just say that I should lose weight. Why should I just spend money to hear that from a doctor?

Tarini*
When I was 17, I had a severe stomach cramping which was assumed to be kidney stones. So I went to many doctors who did many scans and so many blood checkups. And then after all the tests with so many suspects, they finally gave a word to what I had, PCOS. And the doctor who told me this back then said I can never have children. This was the answer by doctors who did not have a clue about this; I don’t know if this was a new thing for them either back then in 2004. Every 3 months I would be having checkups and scans and continuously on pills which made me gain weight. I was traumatized by my weight gain as I was never fat before. Also during this time I had facial hair and was bullied by friends etc. that I have a moustache, which I eventually did 6 sessions of laser treatment because sometimes I was humiliated in public for it.
After all the things I’ve been going through I went to a specialist who guided me on getting my mental and physical health better and not think of conceiving only. So I started drinking 6 litres of water per day which I don’t think I even had a litre before and then I was conscious about my food intake. My menses started regulating every 30-40 days. And then COVID-19 happened which completely changed our lives. I was having healthy home-cooked meals drinking 6 litres of water exercising and meditating regularly and started enjoying life by living with nature. So then 5 months later without any medications, I conceived. What I learned from my journey is that never give up on yourself as when the time is right everything will fall into place. This is for all the girls who are out there with PCOS - do not lose hope, there's always the right time for everything.

Shama
My investigation to PCOS started only after I got married and had issues conceiving but I have to say as a teenager I experienced irregular periods and a bit of fuzz on the chin and usual fluctuation of weight, all of which I did not take it seriously until well into about a year of marriage and recommencing of erratic periods led me to see a gynaecologist.
Thinking a lady would understand my plight I went to a famous lady gyno of the time (circa 1994) who did diagnose my condition but only to be given an overdose of steroids which made me put on kilos within days and then I switched to Dr Hemantha Senanayake now Professor. It was a 2-way journey from here as we both worked towards achieving the goal – a baby.
On my part, I had to maintain my weight and I was put on period regularizing drugs and one thing I did was not change doctors. I do not believe in doctor hopping and decided to stick to the doctor as I did not see anything wrong in the way he treated me. My advice to anyone trying for a baby with PCOS is stick to 1 medical professional for at least 24 cycles.
Notes to people with PCOS: Stick to 1 professional for at least 24 months. I waited nearly 5 years and no regrets. Maintain a healthy diet and exercise moderately. Read as much as you can on the subject. Remember each person is different so chat with your doctor to come up with a fertility treatment best suited for you. Be a participating patient and proactive. Remember that PCOS can be an indication of diabetes later in life as it happened to me. With the treatment of PCOS see that you are constantly monitored with internal scans as fertility medication can cause hyperstimulation of the ovaries and this can be deadly. There can be disappointments during treatment. Do not lose hope. Even after babies, PCOS can remain in your system. Take all the tests the doctors ask you to when you start your treatment. If you can speak to a few people who have succeeded please do so. Losing weight and maintaining insulin levels is key to succeeding in PCOS. PCOS can never go away nor fully cured but it can be controlled. There is nothing called the best doctor for this – so long as the doctor listens to you and you know you are in safe hands is enough as each one will have a different story to tell about a different doctor. Accepting the fact you have PCOS solves your issue at least by 50%.

Pic Credit: Floral vector created by pikisuperstar; FreePik.com