PCOS: the silent disorder

1 in 10 women have PCOS, 50% of them don’t even know they do, and it is the disease that can make teenage girls infertile.

How devastating must be to be deprived by something you never had the chance to even desire. Motherhood could be an experience that millions of teenage girls might never experience, because of the lack of awareness on Polycystic Ovaries Syndrome (PCOS).
Polycystic Ovaries Syndrome, commonly known as PCOS it is the most common genetic hormonal disorder, that affects physically and mentally millions of women in the world. According to the National Health Service (NHS), PCOS symptoms start to manifest from late teens and early twenties.
In the UK, according to a research conducted by the Journal of Medical Internet Research, 7.8% of women aged between 27 and 34 are affected by PCOS.
What causes PCOS is still unknown, but what we know, is that it’s triggered by an abnormal level of insulin present in our bodies. Insulin is a hormone produce by the pancreas which controls the amount of sugar in our blood. When the level of insulin is too high, it causes the ovaries to produce testosterone which prevents normal ovulation.


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According to the NHS, the most common symptoms of PCOS are:
• irregular to no menstrual periods;
• excess of hair growth (hirsutism), especially on the face, chest, back and buttocks;
• weight gain;
• acne and oily skin;
Regardless of these shocking figures, PCOS it is unknown as a disorder and hardly spoken about by those who are affected by it. I had the chance to speak to Emily* and her experience with PCOS:

“I was about 12 or 13, and I would get very irregular periods, like 1 in every 4 months. So, then I went to the gynaecologist and he gave me a scan and said I had PCOS, which by the way, even my sister has. He didn’t even explain to me what it was, his answer to my “what it’s PCOS?” was very vague, he just said that it was like cyst on my ovaries. He made it look like it was not a big deal. So, once I reached home, I did my research and discovered that what I had was more serious than I thought,” Emily says.

“I did suffer from irregular periods for a long period of time, this hormonal imbalance also caused me severe acne, for this reason I got prescribed the pill to regulate my period and acne pill which I used for 4 years,” she continues.
Relationships can be difficult, particularly with someone so young. Trying to explain to a disease which hasn’t been explained in full to the person who is suffering it, must be a difficult situation. It was for Emily.

“When I met my boyfriend, I found it difficult to tell him about my condition, not so much because I was scared about the infertility aspect of it, but I was very embarrassed and ashamed. He didn’t know about it, so I had to explain it to him. Nobody knows about it, so it makes you feel isolated and lonely,” Emily explains.

Loneliness, depression and a low-self-esteem like Emily’s, are very common among women with PCOS.
Neelam Heera is the founder of Cysters, a foundation based in Birmingham, which aims are to educate the public on reproductive health and education. Cysters as a charity community, provides support and welfare to individuals that have reproductive and mental health issues and informs them about treatment options that they may want to pursue.


Cysters logo

In a conversation with Neelam, she disclosed that many of the people that have joined their community are women with PCOS, most of them are from black and Asian minorities, and lately also transgender people.
” In the 21st century, there is this narrative where women are the child bearers, so when a woman is not able to do so or she’s affected by a condition such as PCOS that makes it very hard to reproduce, society tends to look down on them and almost marginalised them. For this reason, many women with PCOS don’t talk about this, and they keep everything within themselves. But it shouldn’t be like that. If we shake ourselves away from this narrative, speaking about this condition and others will become more normalised,” she says.

“It can be very lonely, for this reason we create informal meet ups and forums where people can come and network or just speak to each other. We also do different workshops and have several campaigns to create awareness. Cysters it’s a safe place for many,” she continues.

Neelam believes education is the way forward.
“When we were younger in school, many of us had talks on sex, and teen age pregnancy or the various STI’ s that we were at risk if we had unprotected sex, but we only came to know about PCOS in our older years and for many till they started to discover the symptoms”.

When asked why schools were not valuing this condition like they do with menstrual cycle or even STI’s, considering that PCOS affects many teenage ladies, Sarah from PCOS COCOON said that institutions were simply not taking the time to add this in the school curriculum.
But this is an example of when ignorance can be very harmful in the long run. According to the NHS, if not treated as soon as possible, women with PCOS are at high risk of suffering from:
• alopecia;
• ovary cysts;
• infertility;
• depression and anxiety;
• cardiovascular diseases.

According to Verity-PCOS researchers, women with PCOS are 40% more likely to develop diabetes type 2 than women without this condition and this is more likely to occur on women who are overweight. In the research, if was also found that women who have irregular period, can develop endometrial cancer which is the thickening of the womb lining. This condition is very rare, but a risk that many women with PCOS could be facing, however, it can simply be avoided by taking oral contraceptive pills to regulate PCOS.


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Currently there is not a cure for PCOS, however, there are various ways in which symptoms can be managed. These includes adapting changes in lifestyles.Diet can have a massive impact on PCOS, for example having a balanced diet,drinking at least 2 litres of water a day and avoiding consuming additional hormones  and chemicals are practical things that women could implement against their fight with PCOS.

Alternatively, prescribed medications can be used in order to treat different symptoms associated with PCOS.

Esther Salimon, a Specialist Community Public Health Nurse and mental health first aider gives some advice in how women could manage PCOS.
“First thing a woman should do is not blame herself. PCOS is very common and at times runs thorough family lineage”, says Esther.

According to Esther, knowing your body is key.

“Although the many conflicting information available, knowing your body and symptoms, help to dispel information that may seen foreign to you.
Be informed, and make suitable decisions about your diet. It may take some time, but by understanding and recognising what foods and actions contribute to your PCOS, you will find that you are in a much better position of control, “she says.

Esther also explained how PCOS causes infertility.

“PCOS can affect a persons’s infertility in different ways. Ovulation problems are usually the primary cause of infertility in women with PCOS. Ovulation might not occur due to an increase of testosterone production, or because follicles on the ovaries do not mature. Due to unbalanced hormones, ovulation and menstruation can be irregular and unpredictable menstrual cycles, cal also make it difficult to get pregnant,” she explained.

As previously mentioned, PCOS can be very detrimental for a woman,if not treated correctly and on time. For teenage girls, having awareness and the correct information, would not only prevent them from dealing with mental health issue, low self esteem infertility or even more dangerous health conditions in their adulthood,but it will also give them the power over their bodies, and the ability to control this PCOS, and not to be controlled by it.


Looking for a PCOS support group?

Contact Cysters on Instagram @cystersgroup

*Emily is a pseudonym and not her real name.

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