Why PCOS is More Than Just a Fertility Issue

By Rebecca Bairstow

Attempting to treat Polycystic Ovary Syndrome is often not a smooth journey, and many sufferers encounter various hurdles in accessing treatment. One woman living with PCOS discusses her experiences of the condition.

What is PCOS?

Polycystic ovary syndrome (PCOS) is a common condition that affects how a woman’s ovaries work. There’s no cure for PCOS, but the symptoms can be treated. Many women with Polycystic Ovary Syndrome (PCOS), 1 in 10 women in the UK. An International evidence-based guideline was introduced for the assessment and management of PCOS. It is designed to assist clinical decision making and intended to improve the lives of women with polycystic ovary syndrome (PCOS) worldwide. It was welcome as a starting point for diagnosis and management of the condition, but most patients still require an individual treatment plan. This guideline is the culmination of the work of over 3000 health professionals and consumers internationally, find the key conclusions below.

A Complicated Diagnosis Process

Although Polycystic Ovary Syndrome is thought to affect approximately every 1 in 10 women, many experience difficulties in being diagnosed. Roma, 23 says “I was never formally diagnosed paper-wise”, and instead notes that the collection of symptoms she experienced led to her doctors suspecting PCOS. “When I was 17 I was having a lot of digestive trouble, my hair started falling out and I was just not well,” she recounts. In an appointment at the doctors’, Roma’s GP noticed her medical records stating that she had suffered severe period pain, an erratic cycle, passing out, nausea, and, as she describes “such heavy bleeding I couldn’t get through the lesson.” Due to this, Roma had previously been prescribed the contraceptive pill, aged 15. In light of this, her doctor subsequently recommended an ultrasound scan to check for cysts on her ovaries. Indeed, the doctor’s suspicions turned out to be correct, as Roma recalls: “At the ultrasound, they saw multiple ovarian cysts and said it was most likely I had PCOS.” However, this confirmation did not lead to an official diagnosis. Roma goes on to state that “The doctor said it was impossible to definitely diagnose unless I came across fertility issues when trying to get pregnant.” This lack of a definite diagnosis meant that there was no set treatment plan in place for Roma. Often, doctors will recommend that patients lose weight to reduce their symptoms of PCOS. However, it is also important to note that the condition itself can make it harder to lose weight, as often those who have PCOS also have insulin resistance. In addition to this, not all women who have PCOS are overweight. This was the case for Roma, who says that “Since they said my weight wasn’t a problem, the pill was the only thing they could do.” This course of action is a common one for many doctors attempting to treat the symptoms of PCOS. Though not a cure, in the sense that it does not get rid of the cysts on the ovaries, the contraceptive pill can in some cases alleviate some of the symptoms, including period pain and acne.

Despite this, the pill is not a treatment that is suited to everyone. Indeed, Roma made the decision to come off it, stating “I stopped taking the pill two or three years ago because I felt like it was affecting my mental health.” This is a frequently reported side effect of taking the pill prompting Prof Helen Stokes-Lampard, Chair of the Royal College of GPs, to recommend that ” if a woman believes her contraception might be adversely affecting her mood, she should discuss it with a healthcare professional at her next routine appointment.

Living with PCOS symptoms

“Moreover, for a number of women, the symptoms aren’t treated at all until they experience infertility. As Roma states, “The belief that it is an issue surrounding fertility means most women are diagnosed when they can’t get pregnant. This is already an emotional time for families when earlier intervention could help.” This heavy focus on treating symptoms only when trying to conceive minimises the significance of the symptoms on women’s everyday lives, which are often marred by pain and discomfort.

The end result of this is that many are forced to simply live with what can be agonising levels of pain, indefinitely, with no promise of treatment on the horizon. In terms of handling her own symptoms, Roma looks to what she eats as the first port of call, stating “The main management for me is really checking in with my body in terms of diet. I know my stomach is volatile and it took five years to find a diet that works for me.” Although this can often be an effective way of managing symptoms, Roma hastens to point out that this can vary between sufferers, stating that “I wouldn’t necessarily say prescriptively what that is, but it’s different for everyone.” With this in mind, it would suggest that doctors working out individual treatment plans is more effective than a singular, blanket treatment that is issued to every sufferer. Unfortunately, in light of the current crisis within the NHS – with long waiting times and chronic underfunding – this approach does not seem likely to materialise in the near future. Roma also cites mutual support from other sufferers as a way to signpost different treatment options.

“There are lots of online communities and, as with a lot of women’s health issues, these often are clearer in terms of help.” As well as approaches to treatment, the sites can provide the emotional support that interactions with medical professionals can sometimes lack. Indeed, the physical effects of the hormonal imbalances cause by PCOS can often cause body image issues. In a society where beauty standards often idealise highly feminised features in women, many sufferers cite feelings of embarrassment around their acne, weight gain and excess body hair. Indeed, Roma says that “I’ve experienced a lot dysphoria surrounding my body hair but for me I find a lot of power in acknowledging and publicly speaking about it”, as she believes that “reducing shame is key.”

“Young women aren’t being taken seriously when they are in pain.”Roma advises self-advocacy for those suffering, stating “You know your body best and if something feels wrong push your doctor to get a scan.” She also believes early intervention is key to tackling symptoms when they first appear, rather than after years of suffering in silence.

Recommendation on Diagnosis

For more info on the diagnosis and management of PCOS, refer to International evidence-based guideline for the assessment and management of Polycystic Ovary Syndrome (PCOS) and The National Institute for Health and Care Excellence Guidelines for PCOS

The following recomendations are extracted from the International evidence-based guideline for the assessment and management of Polycystic Ovary Syndrome (PCOS)

• “Rotterdam PCOS diagnostic criteria in adults (two of clinical or biochemical hyperandrogenism, ovulatory dysfunction, or polycystic ovaries on ultrasound) and where irregular menstrual cycles and hyperandrogenism are present, highlight that ultrasound is not necessary in diagnosis.
• Within eight years of menarche, both hyperandrogenism and ovulatory dysfunction are required, with ultrasound not recommended.
• Ultrasound criteria are tightened with advancing technology. Anti-Müllerian hormone levels are not yet adequate for diagnosis.
• Once diagnosed, assessment and management includes reproductive, metabolic and psychological features.
• Education, self-empowerment, multidisciplinary care and lifestyle intervention for prevention or management of excess weight are important.
• Depressive and anxiety symptoms should be screened, assessed and managed with the need for awareness of other impacts on emotional wellbeing.”

For the full report: International evidence-based guideline for the assessment and management of Polycystic Ovary Syndrome (PCOS)

For more info on PCOS, visit: https://www.verity-pcos.org.uk/

About the Author

Rebecca Bairstow After completing her Masters degree in Modern and Contemporary Literature at the University of Manchester, Rebecca joined the Feminine Vitae editorial team. She also has experience writing for The State of the Arts magazine.