Genevieve Lanka: Polycystic Ovarian Syndrome and breaking stereotypes – it’s not a ‘girl thing’
September marked Polycystic Ovarian Syndrome awareness month. It went by hardly noticed, even though it affects as many as 15-20% of women in their childbearing years. It is also linked to 40% of female infertility cases in SA. The numbers could very well be much higher than documented because many women go undiagnosed, bearing the symptoms in silence. In this piece I recount my own journey with PCOS in the hope that it would break the stereotypes and taboos around female reproductive health.
Ovarian Drilling. The moment the words escaped the doctor’s lips images of industrial drills and soldering machines instantly sprung to mind. For a few seconds, I imagined my OB/GYN hovering over me as I lay strapped down to a cold metal slab, him laughing menacingly as he drilled the air with a red flaming contraption. The doctor, experienced and celebrated in his field, nonchalantly described the procedure as quick with minimal pain or risk. It’s a laparoscopic procedure, what is often referred to as band-aid or key-hole surgery as it entails small incisions. ‘So’, he jibbed, ‘you will be back at work in a couple of days’. My husband and I agreed having already pre-empted surgery. It’s been a long arduous road with Polycystic Ovarian Syndrome (PCOS), one I knew would eventually lead to theatre. PCOS is a hormonal disorder that affects women of reproductive age. It causes prolonged or irregular menstrual periods; an excess of male hormones called androgens and is usually marked by excessive facial hair and weight gain. The ovaries of a woman with PCOS resemble chocolate-chip cookies on an ultrasound scan. This is due to multiple fluid-filled sacs (follicles) that collect within the ovaries, preventing ovulation. As a result, women with PCOS tend to face numerous challenges conceiving. They are also at risk of complications such as Type 2 diabetes and heart disease. I was diagnosed with PCOS at just 20 years old. At that time, I was an ambitioUs graduate who had just moved to Cape Town from Durban on an internship at an Expanded Public Works Programme. I was earning my own money, renting an apartment, travelling across the country, buying my own shoes and eating two minute noodles all month long… life was great! But, I was also struggling. I was bleeding excessively and starting to gain weight. I suppose some would say the weight was largely due to the hotel food and noodles, but something felt wrong. I always experienced longer periods. When I was 15, I remember bleeding for five months straight. I only told my parents in the middle of the fifth month, which launched them into action. They got me medical care but I was never diagnosed. The erratic cycles continued and I accepted it as part of my own peculiar womanhood. Now, all these years later, I was feeling drained and embarrassed. I knew I needed help. A friend of made an appointment for me with a gynaecologist in the Southern Suburbs. I remember walking to the doctor’s rooms on my own, feeling defeated. I was sore, depleted; my skin was breaking out and I lamented the fact that barely a week after a visit to the beautician I was already due for a facial wax. I felt as if my body was at war with me, one that I could not explain. The common reaction when I opened up was, “argh girls go through these things, you will manage!” The gynaecologist, a pretty petite lady with curly hair and a sarcastic bite, issued a few tests and scans. It was there, in her cold sterile office, that I heard the term PCOS for the first time. She explained briefly what it was, and then exclaimed, “basically, you are a hormonal fruit basket!” Yes, I certainly felt like one. My emotions were stuck on a roller coaster ride at Ratanga Junction, while my body was like a voodoo doll with too many pins around the belly. I graciously thanked her as I walked out into the waiting room, but by then she was already typing feverishly on her phone and hardly acknowledged me. I tried to process the diagnosis on my way home, but by mind somehow was incapable of conceptualising what it would mean for my future. Would I be able to have children? Am I always going to bleed this way? Will I always feel like I am swinging from emotional poles? How much at risk am I of diabetes? And for the love of beauty treatments, should I just rather resign to the idea of having a Hitler-styled moustache? A year later and I was back in Durban. After a few odd jobs, I finally broke into broadcasting with an internship at the SABC. Barely a few months into that internship, I scoped a permanent position as a producer and presenter for current affairs. I was at the top of my career game with no intention of settling-down – so having children hardly featured in my thoughts. It was a bridge I was willing to cross much later. Well, at least that’s what I thought until a tall chocolately man walked through our church doors and swept me off my feet. Within six months we were planning a wedding and before the year was out, he and I were Mr and Mrs. I was honest with him from the get-go. Living with someone with PCOS can be like trying to dodge land mines. He needed to know the symptoms, the possible complications when wanting to conceive and the long-term risks. He also needed to know that I can go from cuddling and smiling to crying over The Lion King when it’s a difficult bleed. He immediately suggested that we start seeing a specialist together. We consulted with a few doctors in Durban, feeling more dejected with each visit. Many wanted to go the surgical route first. They suggested ovarian drilling, hysteroscopy and even intrauterine insemination and in vitro fertilisation. One said adoption. They offered no hope for a natural conception and were as cold as their offices. It was a difficult time. I was poked and prodded at, prescribed medicines that made me feel depressed and sick, I was gaining weight despite my efforts to shed the kilos…and we were lonely – we wanted children. In contrast to this, I was soaring in my career. I was winning awards; I became a talk show anchor and was flying around the country hosting live town hall debates. I was even doing investigative radio features. I was at the ANC elective conference in Mangaung, I covered national and local government elections and even the memorial and lying in state of former president Tata Nelson Mandela. Yet inside, I was tired and emotionally drained. Many felt that I had nothing to complain about. I was often told that this was all part of being a woman. My husband and I found solace and hope in our religious beliefs. Five years later, we met an OB/GYN who was willing to take the journey with us. He reassured us that conception was not a far-flung dream. It was refreshing to sit across an expert who treated my husband and I as more than just a specimen. Just over a month later and with minimal medical treatments, I was pregnant and radiant… I suppose some of that glow was sweat from the morning sickness, but I was indeed happy. Our baby was growing beautifully inside me. We had an emergency Caesarean just a few weeks before the due date; however she was a perfect, tiny little miracle. But what I didn’t count on was barely two months after delivering my baby I would again be confronted with PCOS. The symptoms were worse this time around. It was far more aggressive. For the next three years, the battle against my body raged fiercely. The stringent diet, the exercise and the medical interventions proved futile and before I knew it, I was laying on slab in theatre recalling all the hospital horror stories I covered over the last ten years. The surgery was successful. The doctor drilled tiny holes in both ovaries, did a hysteroscopy and also cleared endometriosis found behind my uterus. I read online how so many women were back to their normal duties just two or three days after the procedure… kudos to them! I on the other hand was sore and depressed for a week. Like so many women who have been through this journey, I wondered how much more was expected of me. It seemed as if every day things, like getting up and putting on make-up required double the effort. From losing weight to the joy of reading a positive result on a pregnancy test… it’s a battle. And as I have learned over the years, even soldiers get wounded in the fight. The reality is that PCOS affects many women around the world. In fact statistics show that it affects as many as 15-20% of women in their childbearing years. It is also linked to 40% of female infertility cases in SA. The numbers could very well be much higher than documented because many women go undiagnosed, bearing the symptoms in silence. The expectation is that menstruation, girl’s reproductive health and hormonal imbalances must be spoken about in hushed tones. In a country where many girls don’t even have access to sanitary pads; it is unlikely that they will get the medical attention required for conditions such as this. Even healthcare treatments are limited. Medical aids don’t pay for fertility treatment, as if pills like clomid and procedures such as IVFs are the same as getting a face lift or Botox. It is time this stops. The taboos, the uncomfortable side glances when female co-workers have to leave because of unbearable pain caused by endometriosis… the expectation that women must grin and bear it has to fall. This is not a “girl thing”. This is not “part of womanhood”. Break the silence on PCOS and female reproductive health. DM