My life with PCOS: Women share their stories

Three strong women share their experience, diagnosis, and tips on living well with Poly Cystic Ovarian Syndrome (PCOS).

PCOS is a metabolic, endocrine and reproductive disorder that affects a woman’s hormone levels. 1 in 10 women are affected by PCOS during their childbearing years. However, the exact cause of this condition is unknown.

According to the NHS, some common symptoms of PCOS include irregular or missed periods, excessive hair growth (usually on the face, chest, and back), weight gain, thinning hair and hair loss, oily skin or acne, and difficulty getting pregnant.

Alarmingly, at least 50% of women remain undiagnosed as symptoms go unnoticed, or attributed to external factors. When PCOS goes undiagnosed or untreated, there is an increased risk of developing major long term health complications including endometrial cancer, hypertension, type 2 diabetes, as well as anxiety and depression. 

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In conjunction with PCOS Awareness Month in September, the local organisation My PCOS has launched a resourceful platform called MY PCOS, I Love You. The website is available in both English and Bahasa Melayu, and it features a web series, information on workshops and webinars, monthly programs and activities with healthcare professionals, as well as being a support group not just for those with PCOS, but all women. 

The organisation works closely with Dr. Sharan Kaur from Dr. Sharan Clinic (Women’s Health Clinic) in Subang Jaya. Its goal is to easily offer women all the latest and updated knowledge of the condition. “I believe that there should be more researches done in our country to better understand PCOS and the wide scope of treatments out there, so women don’t have to confine themselves to just the standard treatments,” says Dr. Sharan, who shares that she believes a holistic approach is a better way for her to help and support her patients with PCOS.

MY PCOS, I Love You is headed by three incredible women who say they found each other along their healing journeys, each with their own story that they’ve shared with us: 

Deena Marzuki, President

My life with PCOS has not been an easy one. When I was a teenager I was always big sized, despite playing a lot of sports, and eating very little. Growing up around smaller sized ladies in Malaysia didn’t make it feel any easier for me, especially when I was always taller than most.

I was diagnosed at 17 years old after missing my period and experiencing unexplained mood swings. I went to the doctor to take a blood test, and discovered that my body had higher levels of male hormones. I was offered birth control pills to regulate my periods, but unfortunately, the doctor did not explain much about the PCOS diagnosis — apart from the worst case outcomes of irregular periods such as infertility and cervical cancer.

At the time, there wasn’t much information about PCOS online, so I continued on with my life while withstanding the pain that comes with PCOS.

I have irregular or missing periods, excessive hair growth, hair loss, problems with my weight (at my heaviest I was 130kg, while I now weigh 71kgs), erratic mood swings, constipation, fatigue, bloating, headaches and severe migraines, cystic ovaries, severe anxiety and general depression.

The primary treatment for PCOS is a lifestyle change, and for that to happen, we must have the right mindset. We must know that a lifestyle change does not happen overnight, it is a slow process. Vitamins and hormone pills that we take for treatment are secondary. We can take all the medicine in the world, but if we don’t change the way we live, our PCOS may never improve.

On my hardest days with PCOS, I would remind myself of how far I’ve come already in my healing journey, and how much work I’ve put into my health. I sit to listen to what my body wants on those hard days, because each time your body reacts, it is trying to tell you something. Women need to understand that we don’t always have to hustle to be the best, we can take a break and tackle it the next day!

Ili Sulaiman, Ambassador

I was diagnosed at the age of 32 after a regular check up. Prior to that, I didn’t realise that my suffering from depression, quick weight gain and irregular periods were symptoms of PCOS. I was diagnosed with the condition after an ultrasound showed many cysts on my ovaries, and my blood work came back with high insulin and low vitamin D readings.

It’s a challenge to learn to love your body when it doesn’t do what it’s supposed to do. But when your efforts are working, you’re so grateful to be living your best life. On some days you feel absolutely amazing and on other days, you want crawl under a rock because you feel so alone in your suffering. PCOS has taught me patience, to be more loving towards myself and most importantly, it has allowed me to find new friendships within the PCOS community. It’s like relearning how to live your best life whilst dealing with this disorder.

Stress is a trigger for my PCOS. I am the type of person who takes on a lot of responsibilities but now that I know my triggers, I manage my stress by eliminating things that feed my anxiety, which includes too many work commitments or certain social situations. I try to keep my diet at 70% free from gluten, dairy and sugar. I eat a lot of vegetables, and I also take Ovasitol, vitamin D, fish oil, magnesium and multivitamins to keep my hormones in check. Castor and coconut oil help me with hair growth and overcoming constipation (yup, women with PCOS have problems here) and because I also have a thyroid deficiency, I take a medication for that too.

Low intensity workouts, weight and resistance trainings, and long walks with my husband are all physical activities that I enjoy and that help me. Once or twice a month, I’ll also see an osteopath. So you see, it’s a complete lifestyle with PCOS, but it’s beautiful when you have learnt the art of listening, because your body tells you what it needs to heal. I take the time  to acknowledge how I am feeling and I tell the world, today I need to love myself a little more.

Stephanie Yang, Advisor

I thought what I was experiencing were parts of growing up: mild hypothyroidism, fatigue, hair loss, irregular menses, and cravings for sugar that would come on and off. I was only diagnosed during a routine check-up with my OBGYN in 2016. That’s when we found several polycystic ovaries. My mind started to piece all the symptoms together that I had experienced since I was a teenager, even having more facial hair, and irregular periods that I was actually okay with because it wouldn’t interfere with playing sports. Results from my blood tests confirmed my symptoms: a flipped LH/FSH ratio indicating insulin resistance, hypothyroidism, and low vitamin D levels.

After my ectopic pregnancy, I started paying more attention to what my body was trying to tell me. I started paying attention not only to myself, but the PCOS community around me. I met more and more women who shared the same feeling of frustration walking out of the doctor’s office after not being given the support they needed and deserved.

Although PCOS equal unbalanced hormones, taking a hormone pill won’t make our problems go away. Living with PCOS includes physical, mental, diet and emotional health too. A patient once asked me “How would you live well?” coincidentally after my ectopic pregnancy, which got me thinking and reflecting on my own health and lifestyle. Personally, living well means striking a balance and getting our priorities in order.

With food, knowing what triggers a gut response helps tremendously. I have established that I am rather gluten sensitive, so I eat everything I used to love in moderation, and understand where my limits are before I bloat up like a balloon or feel nauseated. I take a multivitamin, thyroid supplement, vitamin D, fish oil and some days, melatonin to help me sleep. On most days I practice clean eating but I’ll still have dessert every so often.

On my hardest days with PCOS, I complain, I rant, and I might even cry in the shower because after all, I am human. But I pick myself up and move on. I dont hate the fact that I have PCOS. I tell myself, I am trying, I am surviving, I am still learning and I am still adapting. Life is too short to waste time wallowing in the past and “what if’s”. I embrace the opportunities given to me.

For more information about Polycystic Ovarian Syndrome (PCOS), visit www.mypcosiloveyou.com.