Lutgard Musiime

September is a month set aside to increase awareness of a condition that has for so long baffled scientists and until now, has no confirmed cure. This condition is called Polycystic Ovarian Syndrome, or simply PCOS.

Polycystic Ovary Syndrome (PCOS) is a common hormonal disorder among women that is also one of the leading causes of infertility yet it remains one of the most underdiagnosed diseases in the world, with less than 25% of women with PCOS being diagnosed, according to Reproductive Science Center. Dr. Louis Chang, the MD of the PCOS Awareness Association writes that “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.”

PCOS is characterized majorly by; irregular or absent periods, excess androgens (elevated testosterone and androstenedione levels), and multiple cystic areas on the ovaries.

I remember my journey to discovering that I had PCOS began after I had missed my periods for about 9 months. They were regular from their onset at the age of 14 until the age of 22 when my hormones took a turn. Although I wasn’t sexually active at that time, I did not want to take chances because 9 months without your period is a long time. This pursuit I will assure you is not a walk in the park, it takes your money, your peace, and let me not talk about the uncomfortable tests done like the transvaginal ultrasound. At one point, because of the heavy periods, I was using at least 10 sanitary towels daily for not less than 3 weeks. When I tell you your mental standing will be tried, this is one of them.

PCOS is known to present itself with infertility, heavy periods, and spotting between periods, pelvic pain during or between periods, mood changes, weight gain, fatigue, or low energy levels, excess growth of hair on the arms, face, back, chest, abdomen or hands and feet, hair loss or male pattern baldness on the head, acne, and insomnia or poor sleep.

Now unless you are familiar, this hormonal disorder is invisible, nothing seems out of the ordinary yet it leaves the bearer miserable who often time will not come out to say anything; you know why? The world has indirectly conditioned women to bear the pain, branding the one who is able to endure the most pain as a ‘strong woman.’ Most often than not, that pelvic pain, the heavy periods, you will be told that that is normal and women are different. No one often sees it as a problem because well, we talked to the snake in the garden of Eden right?

No one sees how one’s mental, physical or spiritual life is affected, constantly hoping for a miracle since up to this day there is no permanent cure, only the symptoms are dealt with from time to time.

My most recent appointment was at Bethany Women’s and Fertility Hospital in Luzira here in Uganda and I remember my gynecologist, Dr. Nsenga Joseph, a highly qualified fertility specialist taking me through the mini-lecture of where scientists have reached in finding a permanent cure for PCOS, what was previously thought to work only to find out that it wasn’t. We ended our appointment with the same thing that has been happening for all these years, dealing with the symptoms.

The dramatic weight fluctuations are frustrating especially when everyone around keeps screaming, “you have lost weight! you have gained weight!” but the control is out of your hands. Many have been labeled lazy. The inability or slim possibility of becoming a mother, making others a father, grandmother, uncle, or auntie leaves you weak in your knees making you feel less of a woman because truth is, we dread the question; “When are you going to start having babies?”

The trap is deep because many of us do not want others to worry or feel sorry so we push on quietly, burdened by the pain and constantly wondering whose son would want to be dragged into this mess if only they knew. Sadly silence does not alleviate, it only isolates.

Writing this is not comfortable for me at all but I recognize that there are many out there scared to let anyone know. We need to reach out for help because we are fighters who need each other, speak up for others who continue to suffer in silence or ignorance. Our stories will offer hope or consolation to those in denial believing that they are alone or crazy.

No, my sister, you are a fighter and you are beautiful. Just like I mentioned in this piece I wrote a while back, PCOS may be part of your story but it is not your story, it is just a chapter in your life book and you cannot allow it to rob you of your joy and laughter, it cannot dictate your storyline or define you because you are in charge of which way your life turns.

So to every lady out there struggling with PCOS, push through the pain, persevere, cry if you need to, fall but do not stay there. Positive is doable and it is possible, take each day at a time and rise above every obstacle and achieve the impossible.

Care for yourself as much as possible, continue to consume the right diet, take the medication prescribed, and exercise with utmost dedication. Do not compare yourself with others because you do not know their story and be kind to yourself. Take the opportunity to help others whenever the opportunity presents itself, Stay strong because it takes soul searching to accept the disorder we suffer. Remember your identity is not your symptoms. You are special and can be confident.

No matter what you are going through, each and every one of you is worthy of joy, happiness, and love. Be strong, you are not alone!