Sex Education Series: how having Polycystic Ovarian Syndrome affects more than just the menstrual cycle
A weekly series on the stigma surrounding sex and sexual health
When I first started my period, I was nine years old. It disappeared for months after that first time, and in all the years following, I can’t ever accurately tell you what day I will actually be on it. Since I started puberty, I have suffered with moderately severe depression and severe anxiety, as well as more body hair and back acne (aka bacne) — the latter two having brutally impacted my self-esteem and body image. I remember in school, some boys telling me I was ugly and mocking me for having a girl-stache, resulting in me shaving it with an actual razor (not a good idea) and then deciding to remove the rest of my body hair, out of shame.
It took years of dealing with irregular periods, poor mental health and mocking comments on my body until I was diagnosed with an illness I never even heard of, when I was fifteen or sixteen years old. I’d been on my period for a month and was referred to a gynaecologist who did an ultrasound. He told me I had Polycystic Ovarian Syndrome and sent me back to my GP, who prescribed me birth control pills. I was sent on my way. No support, no further information.
According to the NHS website, 1 in 10 women suffer from Polycystic Ovarian Syndrome (PCOS) — but a few short weeks ago, when I spoke to a gynaecologist, I was told the number was actually 1 in 3 women. An estimated 70% of sufferers are currently undiagnosed. There is no treatment or cure for PCOS, so for many of us, we are made to deal with it on our own. The debilitating, painful and upsetting symptoms of PCOS range from irregular periods to constant fatigue and exhaustion.
PCOS presents itself in many ways, from embarrassing and seemingly superficial ways that, personally speaking, have long term mental effects like body hair in places we don’t want them and hair loss from the one place we actually want our hair to grow (our scalp). The effects of excessive body hair is something many women from ethnic communities have to deal with growing up, from being the brunt of a bully’s cruel words to being taunted by the spiky-haired wannabe-football-player at school. Because of this, many women are increasingly turning to private clinics in their desperation to find relief from this one particular symptom. Shireen Khan, an awareness advocate for PCOS and founder of aesthetics clinic Hannah London, has been offering a specialised PCOS membership at the clinic, which she has kept open over the lockdown to ensure that women with PCOS are still able to access the important treatments that help to ease their symptoms.
Bringing PCOS into the spotlight is essential as far too many women go without the right support and information. “I’ve battled PCOS myself and experienced first-hand the range of painful symptoms it causes,” Shireen tells me. She goes on to say there is a need for increased awareness of the link between PCOS and mental health, as well as the stigma felt by all the women who cope in silence with the devastating symptoms of the condition. The Royal College of Obstetricians and Gynaecologists (RCOG) say “PCOS may have significant impacts on quality of life and may be associated with a higher risk of mood disorders. PCOS is a multi-faceted condition with impacts on many aspects of general health, reproductive health and wellbeing.”
Women with PCOS experience symptoms such as excessive hair growth, acne, weight gain, hair loss and excessive body hair, and so much more. Naturally, this can have an extremely damaging effect on self-esteem. Shireen has worked closely with women at her clinics in London since 2015, where she offers a vast range of beauty treatments carried out by expert aestheticians, as well as access to nutrition and fitness advice. A lot of these treatments, like laser hair removal and facials, can be used to manage the symptoms of PCOS, and, noticing a trend in the number of women accessing her clinic to treat these symptoms, Shireen offers a PCOS membership to support the clients in need of longer-term treatments. The PCOS membership has been specially created to ease the physical, mental, and emotional impact of PCOS. It offers an initial consultation and assessment, and up to 50% off treatments that target and treat the aesthetic side effects of PCOS. The clinic also hosts private events across London, aimed at bringing women together in a comfortable and supportive environment.
Having a community where a woman can feel safe, trusted and supported is crucial, especially when a 2018 study found patients with PCOS were given less effort and support by healthcare providers and had an overall distrust of their primary care physicians. PCOS is normally given more importance in cases where women want to conceive, rather than all the other issues it causes — such as mental health and the excess androgens, causing body image sensitivity and even leading to issues related to food and disordered eating due to the societal expectations of the ideal body type for women, as well as comments from peers. “The lack of self-esteem due to concerns about body image and appearance aggravated by any concerns about fertility can lead to depression, eating disorders, psychosexual issues, and relationship problems,” writes Dr Anne Connolly, chair of the Primary Care Women’s Health Forum. Whilst many other factors may also contribute to a negative body image and eating disorders, PCOS plays a huge role; the often misconstrued idea of people primarily being overweight with PCOS and the comparisons to the bodies of other women stigmatises the illness further as being a ‘fat person illness’. This leads to being told to lose weight, resulting in a lack of proper nutrients being taken in and excessive exercise in order to take on board the advice offered in a cruel way, instead of a more helpful suggestion. Where weight gain can be a result of insulin resistance and increased desire for junk food and sugar, it is more important to discuss the risk factors of certain food groups, instead of dehumanising a person because of their weight.
Katie Farrell, a transformation coach and healer, has suffered with heavy, irregular periods, excess hair on the face and stomach, insulin resistance and weight issues due to PCOS. She goes on to say, “the information from GP’s at the time (when I was diagnosed) was very scant, however I did manage to see a specialist in the early days and even though he seemed to have greater knowledge about the hormonal imbalances causing the PCOS (rather than the other way around as the NHS advised at the time), my symptoms were dealt with largely through medication and dietary advice. I was put on Metformin (normally used to treat diabetes) but took myself off this after a while as it wasn’t suiting me (I suffered with nausea from the day I started taking it) and within a month discovered I was pregnant.” Online forums were beneficial for Katie receiving information and support regarding PCOS, and whilst the specialist she saw worked alongside a nutritionist, the low GI diet provided and the guidebook of foods that were recommended with recipes, helped only to a certain degree. “But as the core issues weren’t properly addressed, managing the symptoms became a frustrating cycle of some things getting slightly better and others getting worse.”
Now, in the face of COVID-19, Shireen is committed to increasing awareness on the impact PCOS has on mental health and the many ways this has been aggravated by the pandemic. Stress affects the body in many ways and can have a significant impact upon the menstrual cycle, leading to shorter or longer cycles, or even missed periods. Cortisol (the primary stress hormone) is deregulated in people with PCOS, causing increased abdominal fat and insulin resistance. Struggling with irregular cycles, the ever-changing COVID restrictions and Tiers (only causing more tears) is mentally and emotionally draining, further exacerbating these problems further, leading to a vicious cycle of stress wreaking havoc on mental health. Understanding this, Shireen has kept her clinic and PCOS membership open, essentially creating a safe haven for people with PCOS, giving them a protected place to talk and share their experiences as a community, with a community that understands. Her goal is to empower women to take back control by giving them access to therapeutic treatments to boost their confidence, while creating an environment fuelled by empathy, where people can relax and feel safe.
Stephanie* tells me about the support she’s received from her new doctor, after the lack of care from her GP, late last year. “Switching doctors has been amazing, as I now have a doctor who listens to me. I was diagnosed partly due to tests (blood tests and internal ultrasound) to try and find the cause for my pain and irregular periods. My doctor was thankfully incredibly supportive and gave me links to a few different websites where I could read up on it and has answered any questions that I have had,” she explains. “I continue to have appointments with her regularly and we have been trying different treatments to deal with the symptoms, especially the acne. The appointments are also partly to check in on my mental health which has been affected by everything also. I’m twenty-two years old and whilst I’m not currently thinking of having children, I know it’s something I may want in the future and my doctor has been incredibly supportive and willing to explain the fertility issues I may face and why options will be open to me if I need them.” She explains that she’s open about her diagnosis with PCOS and regularly has “catch ups and discussions with friends, who also have PCOS or endometriosis, about our wombs and ovaries on Zoom.”
The RCOG recommends healthcare professionals and primary care doctors to be aware of the full range of the signs of symptoms of PCOS and ensure that appropriate attention is given both to their management and their impact on an individual’s mental health. “Women are at an increased risk of psychological and behavioural disorders, such as depression and anxiety, as well as reduced quality of life. Therefore, psychological issues should be considered in all women with PCOS. Depression and/or anxiety should be routinely screened for and further assessment, and appropriate counselling should be offered by a qualified professional,” they further explain.
It is also important to understand that with PCOS, there is the added risk of getting diabetes due to the inane sugar cravings (related to insulin resistance) and high cholesterol, as well as chronic oligo-ovulation (irregular or infrequent ovulation — and is usually classified as having 8 or less periods in a year) or anovulation (the lack or absence of ovulation and the common cause of infertility). However, this is not to say that people with PCOS will not be able to have children, as they do — though for some, it may just take more effort and trying than most.
Understandably, fertility is important for many people and creating a family is special, but for PCOS to be de-prioritised by healthcare professionals until a person wants to conceive is especially harmful. “When they go to their primary care physicians, particularly if it’s not a gynaecologist, the physician often isn’t going to be educated about what they have,” Dr Andrea Dunaif, chief of endocrinology, diabetes, and bone diseases for the Mount Sinai Health System and the Icahn School of Medicine in New York City, says. “And so, the physician is going to think the patient’s complaints about irregular periods and difficulties losing weight don’t make sense.” Too often, there is a lack of knowledge with doctors regarding PCOS. When I asked my primary doctor about how best to manage to manage the symptoms and increase chances of fertility, they didn’t have any answers for the questions I was asking, therefore having to resort to independent research, like Katie.
Symptoms of PCOS include:
- Hirsutism (unwanted hair growth) which is usually seen on the face, back, arms, chest and stomach.
- Weight gain. It can be difficult to control weight and some people struggle with obesity problems.
- Irregular periods or a total lack of periods.
- Acne. Hormonal changes can cause acne breakouts. Oily skin may also be a factor.
- Tiredness/fatigue. Low energy and feeling fatigued can be an indicator of PCOS (zinc supplements can help to combat this).
- Depression and/or anxiety.
- Difficulty getting pregnant. PCOS is one of the most common causes of infertility or reduced fertility. (Note: this differs from woman to woman and some are able to conceive naturally).
The effects of PCOS on anxiety and depression is something not many people speak about — my own experience with the mental health disorders could be a result of my past trauma, but it can also largely be due to PCOS and the body image issues from fears of weight gain and body hair in excessive amounts everywhere, and hair loss, the stress of infertility and the incessant irregular periods. With my anxiety levels higher than before, being left to research PCOS on my own and finding results telling me about the number of food groups I was no longer allowed to eat (goodbye my beloved cookies and Krispy Kremes, you will be missed!), I often turned to these various support groups online and to Shireen Khan’s PCOS membership group chat. The truth is, having PCOS is a very isolating illness, where we are often seen as being overly dramatic and told to “just deal with the lady problems”, not realising that it causes many other problems. It would’ve been better being taught about PCOS and all the other menstrual cycle and vagina related illnesses, such as endometriosis and vaginismus, instead of being left to our own devices and having to plead and badger our doctors to take us seriously. Many of us are forced to deal with the pain of not being listened to, and feeling isolated — so having a system of supportive women, in the very same situation, may very well help to reduce some of that stress and anxiety.
The importance of having a supportive community, when information surrounding PCOS is so little and it is even more difficult to get appointments with doctors in light of the global pandemic, is necessary. It helps to understand your symptoms a little better, through research and talking things through with other people, as well as swapping ideas and advice. Through being in support groups myself, and being part of a community, I learnt more about PCOS and what helps with the hormone levels more than I ever did from the doctors I’d visited. On Clue, many people have shared their personal experiences with getting diagnosed, with advice. I also got further information from Dr Anna (@nutrafemmerx), a PCOS hormone coach, and Shireen who has gone above and beyond to help other women with PCOS and built a support system for people to feel safe and talk. Through treating myself with Hannah London’s 50% off PCOS membership, I am also slowly beginning to accept my body and learning to love myself, even with the body image issues attached to the extra hair growth.
Connecting with other people when it comes to chronic diseases is vital, because not only are people designed for human connection, but knowing you’re not alone is one of life’s greatest gifts. It helps to deal with the loneliest parts of PCOS and understanding your body just a little bit more. Having a group of other women to talk to about this really helps.
Originally written for Reclamation Magazine