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Contraception, PCOS (Polycystic Ovary Syndrome) & Cultural Taboos: The Spectrum of Perceptions

by in Identity on 22nd November, 2018

Sitting in the consultation room, I wondered what the news was going to be. Will I be able to have children? Is there anything that can stop the physical pain?

My doctor finally walked in with a wad of papers in her hand. She sat down and traced over the diagrams as she explained what PCOS was and how it worked. PCOS-polycystic ovary syndrome- is when the ovaries become enlarged and contain fluid-filled sacs which surround the eggs (NHS, 2016). This leads to issues such as very late or no period at all, excess hair on your face and body, thinning hair on your scalp, acne and weight gain. The problem with symptoms of something like PCOS is that individually, they seem unrelated and treatable which often leads to the actual issue being overlooked. For years I used antibiotics for my acne, threaded my face, waxed my legs in tears because the hair just would not budge. They were not symptoms my doctor or I linked to my ovaries for a long time. ‘You’re a teenager! These things happen’ and ‘you’ll grow out of it’ is all I heard for a good five years. Only after unhealthy long-term use of antibiotics did I decide to do my research.

Eventually, I was scanned and diagnosed with PCOS. The only treatment I had on offer was (still) antibiotics for my skin and ‘the pill’ to endure so that I had less painful and regular periods. During my consultation, it was stressed to me that my lack of monthly period was cause for concern as it could eventually lead to fallopian cancer. The big C was mentioned and so onto the pill, I went. It struck me that some of my friends had similar symptoms to me and none of us had even heard of PCOS or any other reproductive ailment and because the symptoms are so wide-ranging it is difficult to diagnose such problems.

The most recent study conducted by Public Health England, a third of women were suffering from reproductive system disorders, affecting their physical, mental and social wellbeing. Common disorders include, Polycystic Ovary Symdrome (PCOS), Endometriosis and Oligomenorrhea, all of which are treated with the contraceptive pill.

After I got talking to other women experiencing the same symptoms as myself, I discovered that even if they were diagnosed with a reproductive system disorder a significant amount of my friends would not go on the pill. Why? I couldn’t fathom continuing in the same vein as I had pre-pill. Ever since being on it my pain had reduced significantly, as had my body hair and my acne disappeared utterly. Bigger worries like regulating my period to keep my body healthy and increasing my chance of fertility were my primary motivation for accepting it as my remedy.

The more open I was about my medication, the more I noticed that traditional views on the female body still permeated the Muslim community and they were preventing women from accepting the pill as a form of medication. Now, there are issues with the pill in general but that’s for another article, for some women it is the only option in relieving them from the pains and symptoms of reproductive illnesses as well as the only period regulator. Women who have anything from PCOS to Oligomenorrhea have a hormone imbalance, which the pill helps to stabilize by providing progestin and estrogen.   

Talking to Nafisa who grew up in the 80s, I found that her experience with taking the pill was at the opposite end of the spectrum to mine. I was able to make an informed decision without judgment from my family to go on the pill as a remedy for the PCOS symptoms. Nafisa, however, was not as supported.

It’s so lovely to talk with you! Thank you for joining me, can you tell me a little bit about yourself?

“Well, I come from a Middle Eastern Muslim background but I grew up in Britain. I suffer from extreme endometriosis which is when the lining of the womb is actually outside the womb.

Did anyone in your family explain puberty or periods to you?

I wasn’t really told about what a period was explicitly, it was never explained to me adequately. When I started suffering symptoms and just going through puberty in general, it was literally ignored and was like it wasn’t happening.

My mother had initially told me a little while before that I would bleed once a month, where everything was in the bathroom and what I needed to do. That was the only information I was given. Then I just had to get on with it.

So when you did have your first period, what was your experience like?

My first period was horrendous, the pain was unbearable and I remember screaming out at my mum saying she had never told me it was going to hurt like this.

How did your family react to that?

Well, what could they do? I was in absolute pain and my mum tried to comfort me. I was taken to hospital eventually and then sent home the same day.

Was there any discussion about why this might be happening to you?

No, nobody knew at that point and nobody really took the initiative to get it checked out further. I just kept being given pain killers and that was it.

Do you think any cultural norms dictated how your issue was approached?

Yes definitely, I was made to feel embarrassed and basically to not make a scene, I had to kind of be incognito and nobody really wanted to talk about periods at all. It was hard not to be obvious because the pain was excruciating! Eventually, when I was 15 I was diagnosed and again, I just got given general painkillers but this time I also had co-codamol which is stronger because it contains codeine.

So, how did that conversation with your doctor come about?

I just couldn’t cope with pain, it was too much. It got to the point where when we had the end of year exams, if I had a period I would pass out in the exam hall just from trying to cope with pain without making a scene and I had to do my exams. The ambulance got called to my school once, it was ridiculous and I had had enough.

Who made that appointment for you?

I did, I had to because no one else really understood or wanted to understand what was happening to me.

What treatments were you offered?

I just received painkillers for years but I eventually became immune so I went back to the doctor’s and explain that. I had a new doctor at this point, a woman, and she did offer me the pill. It was called the mini pill back then which wasn’t actually used for contraception, it was to help regulate and ease and manage my periods only.  

What was your family’s reaction to that?

I had to speak to my mum about it before I could confirm accepting it from the doctor. As soon as I said that my mum just stopped me there and said: “you are not going on the pill, you don’t know what people will think and what if you think it’s ok to start sleeping around?”

I was in shock that she would say that to me. Firstly, who else would know I had to take the pill? And why would she think that having sex would be the first thing I’d want to do. I hadn’t even thought about those things at that point. She treated me as some kind of rebellious teen who would ruin the family reputation when I had never stepped a foot out of line before. She kept saying “it’s not for us, it’s not something we do”. It was assumed that suddenly being on the pill would make me promiscuous.

So did you avoid taking it because of that response?

Yes, I avoided it for a while. I hadn’t started taking it. It was about six months after that conversation that I decided to try it because I was suffering. Unfortunately for me, I had a bad reaction to it, my blood pressure had dropped to dangerous levels and my skin went grey. So I stopped taking it, but the whole time I was on it my mum would drop snide comments and innuendos about why I might be taking it.  

How did that make you feel?

It made me feel like no one trusted me. It made me feel like I was regarded as a lowly individual, whose physical pain did not override the stigma that came with taking the pill at an early age. It created a lot of tension in the house. At points, my pain was likened to being in labor, and that pain was talked continuously down by my own family.

End of interview

Samia, who is a Millennial did decide to take the pill but struggled to be open about her need for it.

Hi Samia, thank you for deciding to share your experience with me! So, can you start by telling me a bit about yourself?

I’m currently a student and I come from a South Asian family, but I grew up here in England and I suffer from PCOS which has overrun my life in lots of ways.

So what was going through puberty and your first period like?

Well, to be honest, we had a lot of education on those things while I was at school and I do have a pretty open relationship with my mum, so she prepped me quite well regarding what to expect. The only things was, there was a real sense of secrecy when it came to anyone outside of my mum knowing about my bodily changes.

It was like I had to do everything in secret when I was on my period just so no one would know I was on.  Thinking back, there was still that element of, ‘oh you’re a bit dirty and no one, especially men, should know that you have periods’.

My first period was so painful, my legs felt like jelly and I stumbled into the bathroom, I almost fell. And basically, at that point, my mum thought I was exaggerating and being a bit of a drama queen.

It was like that for a while until I really broke out in sweats, tears streamed down my face and I couldn’t move because of the cramps. It was obvious something was wrong.

What happened after that?

I went to the doctor and they didn’t identify what was wrong for about two years, I was on an array of medications. Within those two years, I did mention my intense period pains and also how irregular I was so I was put on the pill but not because anyone had identified PCOS.

Did you talk about being on the pill with your family?

To be honest only my mum and as female relatives knew but I didn’t bring it up too much. There’s still this thing, especially with the generation before mine, or just keeping these things to yourself and getting on with it.

Did your family have any particular views on you taking the pill?

My mum just didn’t think it was great because I have to take it long term and she has those view both due to concerns for my health but also starting a family. Like, for some reason even though I’m taking it for medical issues, sex did come up and I was just given a talk about marriage and starting a family after that, so it was weird because I thought, ummm hello I’m not even close to all that stuff yet.

I think people have concerns about fulfilling a ‘duty’ to procreate and not be on contraception during a marriage but also there’s this strange attitude towards female sexuality, you know like we’re just around to procreate and that’s all our bodies should do and feel so the atmosphere gets a bit strained when you have an issue with your reproductive system. Overall though my mum was understanding of my situation and to be honest it’s not discussed too much now that I have medication for it.

End of interview

It seems that talking about the pill means having to talk about the female body and female sexuality, which as we all know too well, is still treated as abject.

In a patriarchal society, women have always had to fight for control over their bodies. The process of menstruation is considered an undesirable occurrence. There’s also this outdated notion that women cannot control sexual urges which is why we still face issues as serious as FGM which all derive from the need to control female sexual desire.  The concept of the pill feeds into that discourse too, as shared by Nafisa who was immediately branded ‘promiscuous’ after having to take the pill. It is still all too common to have culture and religion used interchangeably to justify the maltreatment of women.

As we see so much progress within the equal rights arena, and so much more accessible knowledge, there is no excuse for preventing women from doing what’s best for their health. Tradition and culture cannot be confused with religious requirements or used to mask misogyny and the prevention of health care for women any longer.

Hanna Johara Dokal

Hanna Johara Dokal

Hanna is a postgraduate student who spends her time writing, filmmaking and ranting about ethics 24/7. She is passionate about human rights, women's rights and creating a sustainable future.