I Am the One in Ten: My PCOS Diagnosis

By Sana Mahmood 

PCOS (Polycystic Ovary Syndrome) is an endocrine disorder that affects 1 in 10 people with ovaries. At least 50% of sufferers don’t even know that they have it. 

My period first started when I was just eleven years old. I was one of the only girls to have had one at the time, and I felt special. This feeling didn’t last; my period was incredibly heavy and painful. I was told that because I started at a young age, this pain was completely common. 

For three years, I also had seriously excessive hair growth. Being a Pakistani, this was very typical, almost normal – I had to undergo the agony of hot wax *at least* once a week. It's also worth noting that I've always been chubby. I tried everything under the sun to keep my weight down, from dieting and eating rabbit food to weekly exercises. But for every pound I lost, I felt like I gained two more just by breathing. Both of these things, I assumed, were in my DNA. I didn’t think much of it or that they could be related. 

It wasn't until I went three months without a period that I realised that I needed to see a doctor. They did some scans and checks and found that I had several cysts in my ovaries. Doctors, you'd think, would figure out what was wrong with me right away, but I was sorely mistaken. I was dismissed and told that I needed to lose weight, take the mighty ‘pill’ and that this would put me back on my regular period cycle. 

After six months and four physicians, there was still no period, and I was still being urged to lose weight. I didn’t give up (as cliche as this may sound) and got it privately checked with a specialist doctor who told me that I had textbook PCOS and couldn’t understand why I hadn’t been diagnosed sooner. 

‘Poly’ means many, while ‘cystic’ means that my ovaries are larger than usual and have multiple (up to 20) cysts. The doctor walked me through the ins and outs of what the symptoms were and how I could treat them (taking the pill and metformin). Once I had my diagnosis, I knew what I had to do. Stick to my meds and exercise. Easy as pie, right? 

A year passed. I still hadn’t had my period, though I stuck to what the doctor told me. So, I quite literally took matters into my own hands. I used Google, watched different videos on the illness, and even read a range of textbooks. I found that there were different types of PCOS which includes the following:

• Inflammatory PCOS – High-level inflammation results from having an overactive immune system. Signs that you may have this kind of PCOS include headaches, unexplained fatigue, and joint pains. 

• Insulin Resistant PCOS – Insulin is a hormone generated by the pancreas that aids in the regulation of blood sugar levels. Insulin is a hormone that aids in the transport of glucose from the bloodstream to the cells, where it is broken down to create energy. Insulin-resistant PCOS patients have difficulty controlling their blood sugar levels.

• Post-Pill PCOS – PCOS symptoms might appear in some sufferers after they stop using oral contraceptives. A person's menstruation may have been normal before or after using the pill.

• Adrenal PCOS – This form of PCOS is caused by a person's stress reaction. Those with adrenal PCOS are either under a lot of stress or their bodies are reacting to stress differently. DHEAS levels will be high (DHEAS is an androgen produced in the adrenal glands).

I also found out that the symptoms I had thought were normal – such as excessive hair growth (known as Hirsutism), irregular periods, and struggling to shred my weight – were all symptoms of PCOS. Some of the other symptoms of PCOS are:

• Thinning of hair on the scalp

• Gluten intolerance

• Diabetes

• Acne

Now that I knew what I was dealing with, I felt more optimistic. The real issue was overcoming or reversing PCOS. The metformin and the pill only gave me two periods in a span of five months. The doctors told me this was progress, but to me it was like taking two steps back. Yet again, I had to take matters into my own hands. 

After doing some research, I decided to go on a strict diet. I removed ‘heavy’ carbs such as white bread, white rice, dairy products, and gluten from my diet. It was kind of like the Keto diet but just a bit more specific to my taste buds (yes, I am a picky eater). I also found that after all these years, the heavy workout sessions I were doing were not effective with PCOS, which made sense. I started doing slow, weighted workouts a couple of times a week. 

Slowly, the weight began to fall off of my body, my hair began to grow in the places it was supposed to (i.e. on top of my head), and my skin began to clear. My period hasn’t come back onto its usual regular cycle. However, I now get more periods than I used to. 

What is the moral of the story? If you have a gut feeling that something isn't right, keep looking for true solutions. The doctors that tried to treat me may have been professionals, but I knew deep down that there was something else that could be done for my PCOS, and I didn’t stop until I found what worked for me.