I was diagnosed with polycystic ovary syndrome (PCOS) about 2 years ago. At the time, I had never heard of the condition, and even though I had been experiencing symptoms for many years before being diagnosed, no doctor had even considered that my irregular menstrual cycles might be indicative of a larger problem. As soon as I learned of my diagnosis, I tried to find more information in Georgian, and while medical resources were more or less accessible at the time, I could hardly find any stories of people living with the condition.
It is especially important to hear from others early in the diagnosis process, as, based on my own experience, this disease is life-changing and altering. That is why this article combines both the medical definitions of PCOS and my own and another person’s, Mariam Chargazia’s stories of living with this syndrome.
PCOS, Symptoms and Diagnosis
To better explain PCOS from a medical perspective, I spoke to obstetrician-gynecologist Anuka Chonishvili: “Polycystic ovary syndrome is one of the most common symptom clusters in women of reproductive age. Based on statistics from the World Health Organization, its prevalence averages 6-13%, and approximately 70% of cases remain undiagnosed.”
The cause of this disease is still unknown, however, at this stage, factors such as lifestyle, stress, etc. are being considered.
Polycystic ovary syndrome has a wide range of symptoms that can affect not only physical but also mental health. According to Anuka, the most common symptoms include irregular menstrual cycles, excess hair growth (hirsutism), acne, and weight gain. Not surprisingly, the condition is also associated with reproductive problems — since menstruation is irregular and there is a hormonal imbalance in the body, ovulation is also rare. In addition, people with PCOS are at increased risk of developing type 2 diabetes, so lifestyle and dietary control are of utmost importance.
Again, due to hormonal changes, stress and anxiety levels are high, which is an even greater burden for the average person living in Georgia — we should also not forget that the symptoms of PCOS are manageable, however, there is no way to completely get rid of it yet. That is why those of us with this disease have to “live” with it, not “fight” it.
As Anuka says, the diagnosis is made based on several factors: symptoms, ultrasound examination, and hormonal imbalance. During ultrasound examination, the size of the ovary and the number of follicles in it are one of the important aspects.
Mariam was diagnosed with PCOS about 10 years ago through an ultrasound and related tests. She was 17-18 years old at the time, and this visit to the doctor turned out to be the most traumatic medical experience: “I walk into the doctor’s office and he tells me, ‘You have polycystic ovary syndrome, you’ll have it your whole life, and you might never have children.’ Without any carefulness, which was very necessary to tell a teenager that she would have some disease her whole life that she had never even heard of. All of this affected me so much that I ran home crying and then cried for a long time remembering it all.”
Mariam soon turned to another doctor, who reassured her and prescribed only one medication. After that, she only went for routine checkups, but she still didn’t have complete information about her illness — she said that doctors didn’t show any initiative, and given her age, she herself wasn’t very interested in investigating this syndrome in more depth. However, there came a moment in her life that I, and I’m sure other people, have experienced — all the symptoms began to appear at once. Despite her unchanged lifestyle, Mariam gained 35 kilograms in 3-4 months and, accordingly, she turned to the doctor again. That’s how she discovered that a number of unpleasant changes had begun in her body: enlarged ovaries, insulin resistance, high prolactin and testosterone, impaired lipid metabolism, chronic hypothyroidism, and low vitamin D.
My story is not much different from Mariam’s — for years I suffered from irregular menstrual cycles and the accompanying unbearable pain, about which doctors told me that this was not a serious problem and that after the age of puberty, everything would fall into place on its own. However, unfortunately, years later, all the symptoms arose at once and I discovered that my life would never be the same again. The most difficult symptoms for me turned out to be those related to mental health — constant anxiety, mood swings, and fatigue, which almost nothing can help with. The weight gain factor is no less painful, when it doesn’t matter what you eat or how physically busy you are, because your body cannot get out of survival mode and does not allow you to live and function fully.
Managing PCOS Symptoms
“Symptom management” is precisely what this disease is all about, because it cannot be completely cured — as you might imagine, scientific knowledge about this disease is quite scarce. “Currently available medications are aimed at managing symptoms, for example, during irregular menstrual cycles — combined hormonal drugs and others,” says Anuka.
Medication is certainly not unfamiliar to Mariam — she has taken some medications long-term, while others have taken them for a relatively short period of time, but she has a lot of experience in this area. After two years of constant treatment since her diagnosis, Mariam stopped taking her medications for a while: “I got really tired of taking medications every day and always having to control myself so that if I eat or drink something now that my medications don’t like, I might feel nausea for the next three days.”
Mariam later went to a new doctor, who “discovered” a number of problems: a lack of iron, calcium, B12, and vitamin D, an inappropriate dose of thyroxine, and an elevated insulin resistance index. “The doctor was amazed at how I was able to stand — I was fine before he said that, but after that I couldn’t physically get out of bed for a week. That’s how a new phase of treatment began,” says Mariam, who was taking “relatively fewer” medications, four different ones, every day, and had a prescribed diet.
Despite the new approach, Mariam’s condition did not improve much:
It took a lot of effort for me to do each action, and waking up was the hardest thing I ever did, I used to call it “laying my eyes on life.” I was constantly tired, which was caused by many things, I had memory lapses, and I had difficulty concentrating. My hands and feet were always numb, my ovaries hurt, and my heart was pounding. Added to this was a depressive background.
Despite time and treatment, Mariam still has most of her symptoms, although, as she says, she has gotten used to living like this.
“If I were starting treatment now, I would probably do a lot of things differently,” — Mariam is currently being treated with contraceptives and Metformin, although she also took nutritional supplements for a while, which is a common method to weaken the symptoms of PCOS.
“I’ve been to quite a few doctors, and I can count on one hand the number of gynecologists and endocrinologists who understand the essence of this disease from start to finish and, at the same time, have enough empathy to not make you want to say no to life,” says Mariam, adding that awareness about this disease is quite low.
Unlike Mariam, unfortunately, I am not distinguished by such a diligent approach to treatment, which is due to certain reasons. Taking contraceptives, in my case, relatively stabilized the symptoms of PCOS, however, it significantly worsened my mental health, which is why I had to make a choice. Also, it is especially difficult to strictly adhere to a diet when you suffer from insulin resistance and have suffered from several eating disorders in the past — here too, you have to choose which approach will harm you more. Added to this is the fact that you miss out on everything that was previously an integral part of your life — for example, now I know that if I stay up late or don’t get enough sleep, I will have to pay the corresponding “price” for it, or if I drink alcohol in excess or eat something from fast food, I will have to say goodbye to feeling good for a few days.
Despite all this, I try not to be too critical of myself and accept the fact that my body is different, which is why it requires more care and caution than usual — perhaps this is something that anyone diagnosed with PCOS should understand.
Living with PCOS
Anuka advises those who have already been diagnosed with PCOS to first learn more about the condition, as a large part of managing symptoms is through lifestyle modifications, including eating a healthy diet, controlling blood sugar, and getting regular exercise. However, identifying and managing mental health issues early is just as important.
Mariam also tries to maintain a lifestyle that helps manage the symptoms of PCOS, although there are periods when constant treatment becomes unbearable and she gives up everything for a while: “It’s just that after these periods, I need a triple effort to get back on track — first comes the regret that I couldn’t improve myself, then the sadness of having to start all over again.”
Ultimately, all of Mariam’s health problems are related to PCOS — directly or indirectly, which is why she tries to pay more attention to specific problems so that this or that symptom does not develop into a larger disease.
“What I’ve realized in the last few months is that I don’t suffer from PCOS, but rather have it, and I don’t have to treat it, I have to learn to live with it. It’s simple in theory. I haven’t been able to put it into practice yet,” says Mariam, calling having this syndrome a “vicious circle”:
“Everything in your body is fighting each other, but your goal is not to go to war, but to somehow reconcile them. In short, living with PCOS is difficult because you have PCOS.”
If I could sum up the experience of having PCOS in one word, I would choose “fatigue” — you are tired of controlling your diet, stress, sleep, hormones, and so many other things; you are tired of taking care of your physical and mental health, which, among other things, is not cheap in Georgia; you are tired of the symptoms that sometimes don’t go away despite the ideal environment; and you are tired of thinking that you will have to live in this reality for the rest of your life, and as a bonus, you may end up with diabetes or some other disease.
At times like these, it is especially important that those around us understand how much of a burden we have to carry as people with this disease — it may not be easy to see to the outside eye that we need to mobilize a lot of energy and concentration every day in order to be functional and at least partially be able to live our lives the way others do. Therefore, if your family member, friend, or relative has been diagnosed with PCOS, I recommend that you accept their lifestyle, symptoms, and a number of limitations as much as possible and not add even more stress to those whose health is particularly negatively affected.