My Journey with PCOS

Disclaimer: PCOS is different for every woman and every PCOS journey is unique. My experience with PCOS is by no means a generalization of every woman’s life with PCOS.

According to Louise Chang, MD, founder of HealthySmartsMD,

“PCOS affects over 7 million people. That’s more than the number of people diagnosed with breast cancer, rheumatoid arthritis, multiple sclerosis, and lupus combined.”

My story of PCOS probably began back during my school days. The only thing was I just didn’t know that I had PCOS.

All I knew was that ever since I “became a woman”, my periods have always been a time of excruciating torture. The pain was so unbearable, and I would literally howl and roll around the floor. Yet this was trivialized by everyone, from family and teachers to even school medics and hospital doctors.

Questions and comments would include:

  • “Did you eat your breakfast today?”
  • “Everyone gets their periods.”
  • “If the pain is too much, just put your head down on the desk and go to sleep.”
  • “Why did you come to school today if you are not well?”

The fact that I nearly collapsed in my 12th grade preliminary board examinations out of the sheer pain and inflammation still didn’t ring a bell. Unfortunately the concept of a gynecologist was alien back then, and is still not a priority even now in many South Asian families. Add to that the taboo surrounding oral contraceptive pills, marriage, premarital sex and virginity, and you will be surprised to find how many doctors in Asia and the Arab world actively discourage and even frighten you about using anything that “interferes with the female reproductive system”. If it were not for these medieval notions, perhaps my PCOS would have been diagnosed much earlier and I would have received help sooner.

When I moved to the US for further studies, I finally got help from American friends and college medics, and used over-the-counter medications like Ibuprufen and Midol to deal with my period pain. Eventhough there was still some pain, it was such a relief just not to be dying for 4 to 6 hours straight. For the first time, I did not have to fear my period. Even then, my friends (and most definitely my roommates) knew to stay clear of me. My normally free-spirited and exuberant self would dramatically transition between a bitter cursing witch and a ferocious snapping turtle. The mood swings were real.

I first noticed something was amiss when my facial hair waxing schedule started to go weird on me. For anyone familiar with waxing, there is always a gap of 4 to 6 weeks between each waxing. For me, it was normally once a month. I observed this schedule go from every 4-5 weeks to 4 weeks, then to 3 weeks, and then to 2 weeks. I would go crazy constantly checking my face for hair stumps. After visiting a gynecologist, running some blood tests and an ultrasound, I finally found out that I had PCOS.

Note: The following information cites recent medical research, as well as lists out my own personal medications, symptoms, treatments, etc.

Symptoms of PCOS

According to the American College of Obstetricians and Gynecologists, these are the common signs and symptoms of PCOS:

General Symptoms of PCOSMy Symptoms of PCOS
Irregular Menstrual Cycle:
Irregular or absent periods, heavy or unpredictable periods due to lower levels of progesterone.
My periods were heavy and included severe pain (dysmenorrhea) to the point of screaming, tossing around the floor and even fainting.
Infertility:
The hormonal imbalance in PCOS affects the growth and release of eggs in the ovaries. However, this is completely treatable. Women with PCOS do get pregnant naturally or with the help of fertility treatments.
Since I have never tried for pregnancy, this is an area I am not familiar with.
Obesity:
4 in 5 women with PCOS are obese.
As a teenager in Dubai, my weight ballooned to 86 kilograms. I was 162 cm in height. Dubai’s sedentary life didn’t help me either. After moving to the US, I started to exercise and watch my diet. My weight dropped to 74 kilograms.

But it was only after being diagnosed with PCOS and a year of social work in India, that I finally pulled my weight down to a healthy 62 kilograms.
Hirsutism:
7 in 10 women with PCOS suffer from excess hair growth on the face, chest, abdomen, or upper thighs. This is due to the excess androgens (male hormones). All women produce androgens, but the levels are much higher in women with PCOS.
Note: Some women also develop male pattern type baldness, thinning hair and skin tags in the armpits and neck area.
As mentioned before, my facial hair waxing schedule started to become more frequent. The affected area was my chin and jawline.

After losing weight and ensuring my hormone levels were stable, I went in for six sessions of laser hair removal.
Severe Acne:
Women with PCOS tend to have oily skin that gives rise to stubborn acne that appears even after adolescence and does not respond to usual treatments.
I remember trying everything from ProActiv to Multani Mitti and Himalaya face packs. My acne only subsided after starting oral contraceptive pills (estrogen & progestin combination).

Today, my facial skin is pretty clear, though I still break out in and around my period. I still have oily skin which is proved by the number of blackheads and whiteheads I discover during steaming and exfoliation.
Acanthosis Nigricans:
Patches of thickened, velvety, dark skin develop on the back of the neck, under the arms and in the groin area. This is due to insulin resistance, where the body does not respond to insulin leading to increased blood sugar levels.
While the weight loss has helped reduce the intensity of acanthosis nigricans, I still have dark inner thighs and groin area. I tried home remedies, as well as visited different doctors and tried prescription creams. But nothing works. So I have decided to accept and love my body just the way it is! 🙂

Note: Do not try unknown bleaching creams or formulas. You can really damage your skin!
Polycystic Ovaries:
Multiple small fluid-filled sacs in the ovaries.
Note: Cysts in the ovaries isn’t enough for a diagnosis. Many women with PCOS do not have cysts on their ovaries. Doctors will look at other symptoms.
When I first noticed the hirsutism, I went in for an ultrasound which showed that I have polycystic ovaries.

health risks for women with PCOS

Complications of PCOS can include:

Treatment for PCOS

There is no cure for PCOS, but the symptoms can be treated. PCOS is different for everyone, which means you are the best person who knows your body. So stop comparing yourself with other women who have PCOS. Every woman has different symptoms and is affected differently.

By understanding your body, you can make the necessary changes in your physical activity, diet and self-care. Remember, medications and life style changes go together. For example, I am a life-long vegetarian. Increasingly I have been experiencing bouts of bloating and diarrhea, an indicator of my growing lactose intolerance. Now with the cutting down of dairy products, I am on a largely vegan diet. Not every woman with PCOS is lactose-intolerant, but I have had much relief by creating changes in my diet.

The only thing I would add here is to stay away from things like fried food, sugary drinks, dessert, ghee, etc. This advice is not exclusive for women with PCOS. It goes for anyone looking to lead a healthy and holistic life. We are what we eat. And refined sugar is a big red flag considering that PCOS and insulin resistance go hand-in-hand. I myself have eradicated sugar from my daily meals. Sugar is for me now the occasional dessert I have as a treat or on special occasions. FYI Treating yourself once in a while is completely okay. We are all humans.

And most of all, stop beating yourself about PCOS. I have to consciously remind myself to draw the line between living consciously versus being critical and panicky. Discard those debbie downers and negative nancys. Your whole life does not revolve around PCOS. Yes, we should make conscious choices and be aware of changes. But, there is so much more to life. To discover, explore, experience and cherish. Because life is a gift, life is beautiful.

Note: Stay away from doctors who don’t want to “interfere with the female reproductive system”. It is an extremely sexist, patriarchal thinking and I have been a victim of it. In the beginning of my PCOS journey, I was on oral contraceptive pills and Glucophage. One endocrinologst in Dubai actually stopped me from taking my oral contraceptive pills. He then went onto prescribe Aldactone, which combined with Glucophage caused severe water retention. I had to stop taking everything and wait for my body to detox before starting any other medication.

Doctors who played a crucial role in my PCOS journey:

I will also be posting new material about PCOS based on my diet, lifestyle and self-care on my instagram. So do check out my page. But until then, these are the doctors who I feel had a pivotal role in my PCOS journey. I have had many doctors and most of them did their job well. But the following three doctors by far were outstanding:

Dr. Aniruddha Nandedkar, Homeopathy, Shankar Nagar, Nagpur, India

He first helped me detox from the side effects of combining Glucophage and Aldactone. Then he put me on a holistic Ayurvedic dietary and physical activity plan. I dropped my weight from 74 kilograms to 62 kilograms over a period of 8 months. I really really owe my weight loss regime to him.

Dr. Sohoni Sunita, Gynecology, Surendra Nagar, Nagpur, India

The world’s best gynecologist ever! She was the first one to patiently walk me through what PCOS actually was. She did not ply me with medications nor subscribe to patriarchal views of the female body. She beautifully described the symbiotic relationship between self-care, meditation, nutrition, exercise and lifestyle.

Dr. Muna Ali Saqr, Dermatology, Dubai Mall Mediclinic

After my weight loss in India, I met with Dr. Muna. An amazing dermatologist, she first had me do blood tests to ensure my hormone levels were stable before proceeding with the laser. My laser hair removal for the affected areas (chin & jaw line) was effective, stress-free and with no side effects. It felt incredible and was long-lasting.

Further Reading

PCOS Awareness Association

American College of Obstetricians and Gynecologists

The Mayo Clinic

Johns Hopkins Medicine

Office on Women’s Health

PCOS (Polycystic Ovary Syndrome) and Diabetes