Approximately 25-30% of women in the Middle East and North Africa suffer from PCOS.
Munna was 14 when she first realised something was maybe wrong with her body.
“I was having irregular periods and I would experience extremely painful and severe cramps,” the now 22-year-recalls.
When she went to the hospital for help at 14, she was diagnosed with Polycystic Ovary Syndrome (PCOS), a condition in which the ovaries produce high levels of male hormones, which are normally present in rare amounts in women.
“When you are young, it is scary to be told there is something wrong with your body, but it’s even scarier to be told your condition is not a big deal,” she said, explaining that the doctors dismissed her pain and told her not to worry about it.
The painful symptoms continued as she matured, transpiring to hair loss and weight gain. Every time she tried to switch doctors for her condition, she was either given temporary pain relief medication or told this would go away when she gets married.
“They don’t see it as a real problem [PCOS] unless it causes infertility or unless you are married, but why should getting help for a painful condition affecting my body depend on whether I have a husband or want to have kids?” Munna asked.
1 out of 10 women suffer from PCOS
Munna is among the 1 in 10 women who experience PCOS globally, making this the most prevalent hormonal disorder in adolescent girls and women. Women with PCOS often experience abnormal periods, acne, cysts in their ovaries and sometimes hirsutism, a condition that results in excessive growth of dark hair on, the face, chest or back.
Meanwhile, women with PCOS are three times more likely to develop endometrial cancer and twice as likely to have high blood pressure, a heart attack or a stroke, and infertility, but this information was not given to Munna when she went to hospitals.
Research shows that PCOS patients see on average 4 physicians and take up to two years to have an accurate diagnosis.
Although the reasons for this disparity can vary, local experts have asserted that it is sometimes due to the stigma attached to women’s reproductive health and a lack of clinical education around the condition.
“Women’s health in the Middle East is less important in many ways than other aspects which explains why, to some extent, reproductive health conditions like PCOS are oftentimes ignored and the lack of knowledge on this subject is concerning,” former Professor of Medicine at Weill Cornell Medicine-Qatar (WCM-Q), and lead author of a 2017 groundbreaking research on PCOS among women in Qatar, Dr. Stephen Atkin, told Doha News.
For PCOS awareness month, Doha News talked to women with PCOS in Qatar who on the challenges they face receiving treatment and the alternatives they have adopted.
‘PCOS is not a one size fits all condition’
Women with PCOS often experience abnormal periods, acne, cysts in their ovaries, increased hair growth, and many other symptoms caused by excessive male hormones, which usually begin shortly after puberty.
However, symptoms vary depending on different factors including age, geography, ethnicity and other aspects that are yet to be discovered.
Weight gain is one of the most commonly misunderstood symptoms of PCOS, and doctors tend to tell women with PCOS to focus on losing weight as a treatment, without targeting the rest of the symptoms.
Maha, a 25-year-old Qatar resident, was first diagnosed when she was 16 years old.
“After the sudden tragic death of my father, I didn’t get my period for almost 6 months,” she said, adding that she thought the missed periods were related to grief and stress.
When her mother took her to the hospital for a checkup, the doctor did an ultrasound and found ovarian cysts in her womb. She was diagnosed with PCOS, but just like Munna, the doctor prescribed her birth control pills and told her she had nothing to worry about, except losing weight.
Since the age of 16 up until the present , Maha has been to almost 9 doctors in Doha for PCOS.
“I was told by doctors that I had to lose weight since I was 16 years old, but even when I lost the so-called weight, they still told me I had to lose or regulate my weight, which stressed me and impacted my mental health negatively,” Maha told Doha News.
Maha was also prescribed birth control pills to regulate her period, and although her period came back 7 days later, she experienced multiple and continuous side effects.
“I still had issues with mood, my period would sometimes still be late, and it physically made me tired and exhausted,” Maha recalls, adding that prescribing birth control pills is lazy treatment doctors give without considering other specific symptoms.
Doctors typically prescribe birth control to restore normal hormonal balance, regulate ovulation and alleviate symptoms such as excessive hair growth. The pills however tend to increase insulin resistance which can lead to weight gain. This was not told to Maha when she was first prescribed birth control.
“Birth control pills should be given to women with a body mass index of 30 or less, but not more than 35,” Dr. Atkin told Doha News, stressing that someone’s current weight should be put into consideration before prescribing any PCOS treatment.
“ If someone has a body mass index greater than 35, there’s a much greater chance of putting on a lot more weight and having negative aspects with birth control.”
Can PCOS increase chances of getting diabetes?
PCOS may appear to be solely an ovarian disorder, but the reality is far more complicated. While PCOS affects the ovaries and ovulation, it can also be a broader metabolic disorder linked to insulin resistance and diabetes.
Insulin resistance is a common trait in PCOS-affected women, meaning that their bodies can produce insulin but can’t effectively use it. Since the hormone insulin helps regulate blood sugar or glucose levels, the presence of uncontrolled blood sugar increases a person’s risk for type 2 diabetes.
“We found a strong correlation between PCOS and pre-diabetes, which is characterised by raised blood sugar levels and makes the onset of type-2 diabetes likely,” Dr. Atkin said, noting that women with PCOS in his 2017 study had a higher body mass index, were more likely to be obese and had higher blood pressure.
In order to conduct this study, Dr. Atkin was granted access to the Qatar Biobank so he could view the biometric information of 750 anonymous Qatari women between the ages of 18 and 40.
The study found that 87 of 720 women had PCOS, which accounts for almost 12% of the group. Among the 87 women with PCOS, 19% had pre-diabetes, a serious medical condition characterised by high sugar levels but not yet high enough to be officially diagnosed as type 2 diabetes.
However, though women with PCOS may have insulin resistance and are therefore more prone to having diabetes, this does not mean that PCOS directly causes diabetes or pre-diabetes.
Insulin resistance is not the sole cause of diabetes, just as one may have insulin resistance due to other conditions too. One might also be more prone to type 2 diabetes due to certain genes. Diabetes may further be brought on by genetic mutations, other conditions, pancreatic damage and specific medications.
This means that you can have temporary insulin resistance without PCOS or diabetes, which is why physicians have to conduct multiple tests to eliminate the possibility of other conditions that might cause PCOS-related symptoms such as irregular periods, before prescribing birth control as a solution.
“You have to exclude hormone problems like increased prolactin, which can cause irregular periods. You have to exclude thyroid problems, which again can cause irregular periods. You have to exclude some other biochemical conditions,” said Dr. Atkin, emphasising that if these conditions are not excluded, PCOS can be overdiagnosed or underdiagnosed.
PCOS and mental health issues
Women with PCOS are two times more likely to have depression, anxiety and perceived stress than women without PCOS, according to a 2018 comparative study.
The increased depression, anxiety, and stress can be linked to body dysmorphia according to Dr. Atkin, who has worked with women with PCOS in Qatar to find appropriate treatment and care.
“Many women with PCOS perceive their own body as more unattractive than perhaps it actually is, mostly because of different factors, including increased weight gain and excessive body hair growth caused by excess male hormones,” Dr. Atkin added.
When Munna gained weight because of PCOS, she noticed how people started perceiving her differently which took a toll on her mental health.
“Some people think I have PCOS because I eat unhealthy food, so they keep telling me to go to the gym , without acknowledging that I have an underlying condition that just exercising at the gym won’t fix,” she said, emphasising that it is even worse when doctors reject her pain without providing solutions and treatment.
“It is painful when people around don’t understand how you can’t get out of bed because of physical pain, and I have to constantly explain that I am not lying about my condition,” she added.
Even though maintaining weight and having a healthy lifestyle has been proven to improve PCOS symptoms and reduce an individual’s risk of developing PCOS, some doctors don’t specify how to maintain weight specifically and what to eat, leaving many women confused.
“Treatment for PCOS is not a one fits all phenomenon, and some women might need different treatments depending on the type of PCOS they have, their concerns, and what they want to address,” said Dr. Atkin, highlighting that treatment should go beyond recommending weight loss or giving birth control pills, which can have deteriorating effects.
“When we examined the correlation between quality of life and weight loss, what we found is that with weight loss, quality of life and mental health actually improved, but this doesn’t necessarily work for all women with PCOS and mental health issues,” Dr. Atkin added.
Alternatives to Western Medicine?
PCOS does not have a cure, but doctors provide different solutions to reduce symptoms, including lifestyle changes, diet regulation birth control for irregular periods and other drugs to treat pre-diabetes and infertility.
Because of increased stigma around PCOS, women’s bodies and the fact that PCOS manifests differently for different women, some have adopted other alternatives to cope with symptoms.
“For me, doctors haven’t treated me well, and I have been on hormonal pills which made it worse, so I decided to take matters in my own hands,” said Munna.
“I use hot water for my cramps, herbal treatment, specific kinds of teas one supplement called Inositol, and I realised having gluten and dairy makes my PCOS worse so I reduced that, which reduced pain,” the 22-year old told Doha News, adding that she learned most of these alternatives from the South Asian community, who have helped her a lot more than doctors have.
The same sentiment is shared by Maha, who stopped going to doctors a few years ago.
“Solutions like birth control don’t work for all women and it can sometimes do more harm than good, so I decided to read more online and follow tiktokers who raise awareness about other alternative solutions,” she said, adding that science has generally been lazy and negligent when it comes to women’s health.
“It doesn’t make sense how they were able to find a vaccine for COVID-19 in months but we still don’t know what exactly causes PCOS and how to cure it,” Maha added.
Experts in the field also recognise the general lack of awareness around PCOS and believe more efforts should be put into diagnosis to find the right treatment for different types of the syndrome.
“PCOS is not just limited to irregular periods. The trouble is that many doctors don’t really take hirsutism seriously, which is a very important condition to address since it affects body image,” Dr. Atkin told Doha News.
“We need one stop PCOS clinics where women with these issues can be referred to, which would allow doctors to make a simple straightforward diagnosis with all the necessary blood tests,” he added.
There is currently no clinic designated for PCOS in Qatar. Women with the ovarian condition have to either visit endocrinologists in bigger healthcare clinics or go to doctors who will treat the symptoms separately.
“If all the symptoms are not analysed together, this can lead to under-diagnosis and the wrong treatment,” Dr. Atkin concluded.