PCOS: ‘A sentence to pain and complications.’
It can cause infertility, debilitating pain and an increased risk of serious health problems. Nevertheless, very little is known about polycystic ovarian syndrome (PCOS). There is no cure for the condition which, according to the Royal College of Obstetricians and Gynaecologists, affects one in every five women.
It can be hard to treat, manifesting itself in many different ways, and the cause of this mysterious syndrome remains unclear.
With symptoms ranging from bothersome to crippling, the condition can also increase a woman’s risk of health problems later in life, including type 2 diabetes, high blood pressure and high cholesterol.
Several women living with PCOS have been sharing their testimonies as part of efforts to raise awareness of the disorder.
Rachel Grant-Waters, 33
“Your cramps feel like someone has got hold of your abdomen and has literally just squeezed.”
Rachel Grant-Waters’ cramps are often so severe that she is left “doubled over in agony.”
For her, a good night’s sleep can be impossible, tossing and turning in discomfort from cramps and headaches. “I wake up in the morning feeling that my head’s been in a vice all night,” said Rachel.
However, the worst part of Rachel’s PCOS symptoms is the mental impact. In the run up to her period there is “a crazy hormone kick” which causes “emotional trauma,” where she becomes hypersensitive, irrational and anxious. This, she describes, would cause her to have “massive reactions” to things she would shrug off on a normal day.
Rachel adds: “You become that stereotype that we’ve been trying to battle against since the fifties of this kind of really emotional, irrational kind of woman.”
Yet, “there is no off switch” for PCOS symptoms, and the erratic unpredictable periods can come at any time. “You end up praying for your period to come over a weekend so that it’s not going to interrupt your work,” says Rachel.
Although, there is a lack of awareness in the workplace surrounding female health. Rachel stresses there cannot be an expectation for those with PCOS to perform at an even keel all year round.
“In an ideal world, we would have a workplace that was far more in tune with the female cycle and the impact that cycle has on our ability.”
However, after her diagnosis she found she had to confront the immediate reactions of society’s expectations of motherhood. “You can’t have kids?” This Rachel explains is not a conversation she wants to have with people unless she starts it.
From trying gels, tropical creams and antibiotics, to multiple blood tests in her teenage years, the road to diagnosis was long. “They would keep saying it’s your hormones, they’ll sort themselves out. It’ll be fine, as you get older, it will sort itself out.
“The run up to getting your diagnosis is such a battle and it just wears away at your self-confidence, your self-esteem and also your sanity, because you’re going to your doctor and you’re saying there’s a problem,” explains the 33-year-old.
It wasn’t until Rachel went to a women’s clinic and had an internal ultrasound that she was diagnosed with PCOS.
However, even after diagnosis the 33-year-old has said she has little to no support and is left managing symptoms by herself. She adds: “It feels really isolating. It takes a toll on you.”
Rachel says she was only given information for the pill. People who suffer with PCOS are often offered contraceptive pills to help regulate and control their periods. However, not all women want to go on the pill and there are other treatment options for those with the condition.
Instead, she researched and learnt what supplements and diets which could help manage her symptoms.
She is also emphasising the need for a comprehensive education around female health and reproduction in schools.
“So that the next generation of girls who are about to hit puberty are not left with this sense of corrosion of their self-esteem and their wellbeing when things are not progressing the way the textbook says that they should.”
Emma Gayle, 29
Emma has both PCOS and endometriosis. “They are a sentence to pain and complications even after diagnosis,” she says.
For two years, Emma had “repeatedly” been going to the GP until she ended up in hospital with ruptured cysts at 21-years-old. This led to her PCOS diagnosis.
However, Emma was originally told that, because she had children, it could not be either of these conditions.
Emma’s symptoms include acne, chronic migraines and cramps. Her periods range from lasting for weeks or not appearing for a year. “There are days I struggle to stand up, I can collapse in pain or spend the whole night awake trying to find relief,” adds Emma.
Living with PCOS and endometriosis means parenting can sometimes be difficult and Emma says it’s “heartbreaking” when she is unable play or take her children on days outs.
She also lost her university place after getting sepsis from a kidney infection connected to her endometriosis.
However, little is known about PCOS and endometriosis in the workplace. Something Emma knows only too well, having faced comments from her employer such as “You’re sick again” or “But you look ok,” which she explained can be mentally damaging for those fighting a daily battle with themselves.
She adds: “Companies are not equipped to handle invisible issues. They don’t have the procedures to support employees or the understanding unfortunately.”
The 29-year-old says her condition has caused her to lose every job she has ever had, so she decided to start her own business. “Not ready to sack myself yet,” said Emma.
The company, founded in the first lockdown, has one mission; to provide clothing designed and adapted for those with chronic illnesses, such as PCOS, endometriosis and Crohns.
I’m Fine Attire clothes come with messages and slogans of empowerment and have adapted heat pack pockets in them for pain relief and comfort.
Emma is not alone in her endometriosis diagnosis, her cousin also has the condition and at one point their symptoms were so severe they both ended up in hospital at the same time, which is when the business idea was born.
“Whilst trying [to] entertain ourselves we would joke about the idea of clothing made to help us.
“Lightbulb moment. We walked to the canteen with her catheter tied in a lovely bow of her dressing gown and I donned a hot water bottle in a scarf wrapped around my stomach.
“I knew there had to be more I could do.”
With Emma’s new business blooming, she hopes to take the products to a mass market to raise awareness and normalise the condition.
Her aim is to create an inclusive working environment for people with disabilities and chronic illnesses.
“There are so many amazing and talented people out there that are unemployed purely due to the fact companies are not willing to adapt.”
You can find out more about I’m Fine Attire here.
Kayleigh Chaplin, 33
“People just think you’re fat and hairy and judge without knowing the ongoing suffering that goes with it.
“I rarely went out anywhere public when we could and now, I have had the perfect excuse to stay hidden.”
Excessive hair and weight gain affect Kayleigh’s self-esteem every day.
However, these are symptoms which PCOS sufferers are often powerless to. Like many, Kayleigh has a hormonal imbalance, which causes food cravings. This, she explains, makes it incredibly hard to lose weight and a difficult cycle to break.
The 33-year-old also has extremely heavy bleeding, particularly on the second and third day of her period. “I cannot even stand up without needing to go and change or shower sometimes.” If she made it into work, it could mean going to the toilet every ten minutes. But sometimes her periods make going to work impossible.
Kayleigh is now a full-time mum. It took three years for her to conceive her first child and seven years for her youngest.
When Kayleigh received her diagnosis, she says she was told “It won’t kill you. Nothing can be done.” While there is no cure for PCOS, the symptoms can be treated. It can be a long road to find an effective solution. Kayleigh has tried many treatment options over the years but she says none have worked.
Terri Meredith, 36
“I came out of there, crying my eyes out to my mum and [my husband] Matt, saying: ‘Oh my God, I’m never going to have children.”
For five years, Terri had been trying to get pregnant and after receiving her PCOS diagnosis results via an internal and external ultrasound, she thought it would be impossible.
She could go from a month to nine months without having a period.
The 36-year-old was also later diagnosed with endometriosis. She was told falling pregnant would be difficult. For people struggling to conceive, treatments include IVF and fertility drugs.
Terri now has a six-year-old son, Jack, and a two-month-old girl called Grace.
Maureen Busby, 49
Maureen Busby was diagnosed with PCOS 21-years ago, when she began experiencing irregular periods, high androgens and cysts on her ovaries.
However, Maureen said she was given little to no information about PCOS, what it entailed or how her life would be affected when diagnosed by her GP.
“That was it. No explanation of what it was, no support, nothing. Looking back now it was utterly disgraceful.”
Maureen is stressing that the condition is not just a reproductive disorder but “a lifelong metabolic disorder.” Due to abnormal hormones, she is often in a constant cycle of losing and gaining weight.
Weight stigma is something Maureen has found to be a major problem, particularly in the healthcare sector.
“I stopped going to the Doctors because every time I went, all the problems were blamed on my weight, but it wasn’t the weight that was the problem it was my hormones.”
Three decades later, Maureen believes little has changed to help women who find themselves in the same position as her.
After years of learning how to manage her symptoms through nutrition and exercise, she is dedicating her life to breaking the stigma around the PCOS and raising awareness. Maureen has set up PCOS Vitality, an online website and community offering free information and support to women with the illness across the UK.
“We are a friendly bunch and it really does help to know that you are not alone in your PCOS journey and that PCOS is not your fault.”