Women Share Their PCOS Stories
Three strong women share their experiences, diagnosis and tips for living well with Polycystic Ovary 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 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 go undiagnosed because symptoms go unnoticed or are attributed to external factors. When PCOS is not diagnosed or treated, 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.
Along with PCOS Awareness Month in September, the local organization My PCOS launched an ingenious platform called MY PCOS, I love you. The website is available in English and Bahasa Melayu, and it offers a web series, information on workshops and webinars, monthly programs and activities with healthcare professionals, as well as a support group not only for people with PCOS, but for all women.
The organization works closely with Dr Sharan Kaur from the Dr. Sharan Clinic (Women’s Health Clinic) in Subang Jaya. Its aim is to easily provide women with all the most recent and up-to-date knowledge about the disease. “I think there should be more research done in our country to better understand PCOS and the wide range of treatments available, so women don’t have to limit themselves to standard treatments,” says Dr Sharan, who shares this she believes that a holistic approach is a better way for her to help and support her patients with PCOS.
MY PCOS, I love you is run by three amazing women who say they have found each other throughout their healing journey, each with their own story that they have shared with us:
Deena Marzuki, President
My life with PCOS has not been easy. When I was a teenager I was always tall, although I did a lot of sports and ate very little. Growing up with short women in Malaysia didn’t make it easy for me, especially when I was always taller than most.
I was diagnosed at 17 after missing my period and having unexplained mood swings. I went to the doctor for a blood test and found that my body had higher levels of male hormones. I was offered birth control pills to regulate my period, but unfortunately the doctor did not explain much about the diagnosis of PCOS other than the worst consequences of irregular periods such as infertility and cervical cancer. uterus.
At the time, there wasn’t a lot of information about PCOS online, so I moved on with my life while resisting the pain that comes with PCOS.
I have irregular or missing periods, excessive hair growth, hair loss, weight problems (at the biggest I was 130 kg, whereas I now weigh 71 kg), erratic mood swings, constipation, fatigue, bloating, severe headaches and migraines, cystic ovaries, severe anxiety, and general depression.
The main treatment for PCOS is a change in lifestyle, and for that to happen we need to have the right frame of mind. You should know that a lifestyle change does not happen overnight, it is a slow process. The vitamins and hormonal pills that we take for treatment are secondary. We can take any medicine in the world, but if we don’t change the way we live, our PCOS might never get better.
During my most difficult days with PCOS, I remembered how far I had come in my healing journey and how hard I worked on my health. I sit down to listen to what my body wants during these tough days because every time your body reacts it is trying to tell you something. Women need to understand that we don’t always have to fight to be the best, we can take a break and tackle it the next day!
I was diagnosed at the age of 32 after a regular check-up. Before that, I didn’t know that my depression, rapid weight gain, and irregular periods were symptoms of PCOS. I was diagnosed with the disease after an ultrasound showed numerous cysts on my ovaries, and my blood tests came back with high insulin readings and low vitamin D levels.
It’s a challenge to learn to love your body when it’s not doing what it’s supposed to be doing. But when your efforts work, you are so thankful that you are living your best life. Some days you feel absolutely amazing and other days you want to crawl under a rock because you feel so alone in your suffering. PCOS taught me patience, to be more loving to myself and most importantly, it allowed me to find new friendships within the PCOS community. It is like relearning how to live the best of your life while dealing with this disorder.
Stress is a trigger for my PCOS. I’m the type of person who takes a lot of responsibility, but now that I know my triggers, I manage my stress by eliminating the things that feed my anxiety, which includes too many work commitments or certain social situations. I try to keep my diet 70% gluten, dairy and sugar free. I eat a lot of vegetables and also take Ovasitol, vitamin D, fish oil, magnesium, and multivitamins to control my hormones. Castor and coconut oil help me grow hair and overcome constipation (yes, women with PCOS have issues here) and since I have a thyroid deficiency as well, I also take a medicine for it.
Low-intensity workouts, strength and resistance workouts, and long walks with my husband are all physical activities that I enjoy and that help me. Once or twice a month, I also go to see an osteopath. So you see, it’s a whole lifestyle with PCOS, but it’s beautiful when you’ve learned the art of listening, because your body is telling you what it needs to heal. I take the time to recognize how I feel and tell the world, today I need to love myself a little more.
Stéphanie Yang, advisor
I thought what I was going through was part of my childhood: mild hypothyroidism, fatigue, hair loss, irregular periods, and cravings for sugar come and go. I was only diagnosed during a routine checkup with my OBGYN in 2016. It was then that we found several polycystic ovaries. My mind began to piece together all of the symptoms I had experienced since I was a teenager, even having more facial hair and irregular periods that I was actually okay with because it didn’t interfere with the practice. of a sport. The results of my blood tests confirmed my symptoms: an inverted LH / FSH ratio indicating insulin resistance, hypothyroidism, and low levels of vitamin D.
After my ectopic pregnancy, I started to pay more attention to what my body was trying to tell me. I started to pay attention not only to myself, but to the PCOS community around me. I have met more and more women who shared the same sense of frustration walking out of the doctor’s office after not receiving the support they needed and deserved.
Although PCOS equals unbalanced hormones, taking a hormonal pill will not make our problems go away. Living with PCOS also includes physical, mental, nutritional, and emotional health. A patient once asked me “How would you live well?” Coincidentally after my ectopic pregnancy, which got me thinking and thinking about my own health and lifestyle. Personally, living well means finding a balance and putting your priorities in order.
With food, knowing what triggers a gut response helps tremendously. I have found that I am quite sensitive to gluten, so I eat everything I like in moderation and understand where my limits are before I bloat or feel nauseous. I take a multivitamin, thyroid supplement, vitamin D, fish oil, and some days melatonin to help me sleep. Most of the time, I eat healthy, but I still have dessert every now and then.
On my toughest days with PCOS, I complain, storm, and might even cry in the shower because after all, I’m human. But I get up and walk forward. I don’t hate the fact that I have PCOS. I tell myself, I try, I survive, I still learn and I always adapt. Life is too short to waste time wallowing in the past and “what if”. I take the opportunities that are offered to me.
For more information on Polycystic Ovary Syndrome (PCOS), visit www.mypcosiloveyou.com.