Speaking out: the struggle for a Polycystic Ovarian Syndrome diagnosis in the UK

Natasha Cowan|14th May 2018

Image: Freepik.com

Let’s be honest, no one really wants to talk about their period. We speak about it in hushed tones or we simply don’t talk about it at all. We use more than 5,000 euphemisms to describe our ‘time of the month’, from ‘Aunt Flo’ to ‘surfing the crimson wave’ and from ‘Menzies’ to my personal favourite ‘A Leona situation’ (in reference to Leona Lewis’ 2007 chart-topping hit ‘Bleeding Love’).

I understand why people don’t want to hear about this topic. However, when the taboo spills over into the way patients are treated by healthcare professionals it becomes concerning.

Last year, an enquiry led by the All Party Parliamentary Group on Women’s Health (APPG) revealed women are suffering in silence when seeking help from the UK National Health Service (NHS) about women's health issues.

"42% of women felt they were not treated with dignity and respect"

The group surveyed more than 2,600 women, revealing 42% of women felt they were not treated with dignity and respect, 62% of women were not satisfied with the information they were given about treatment options, and almost 50% were not told about short or long-term complications resulting from the treatment options provided.

Worryingly, 67% of women first found out about their condition via the internet, despite visiting healthcare professionals. The APPG has deemed this treatment ‘unacceptable’, but in the year since the report was published, little has changed.

In 2014 I was diagnosed with Polycystic Ovarian Syndrome (PCOS). Although I am a huge advocate for the NHS, I believe more can be done to improve the treatment of patients with gynaecological issues.

What is PCOS?

PCOS is an extremely common illness, which many women will have without realising they have it. However, for some women, the symptoms can be debilitating and cause significant pain, anxiety, and low self-esteem.

The syndrome affects one in 10 women of childbearing age. It is caused by a hormonal imbalance and metabolism problems that can impact your overall health and appearance. It can also lead to type 2 diabetes and high cholesterol.

Often it is difficult to diagnose a woman with PCOS as she may only present a few of the many symptoms.

Common symptoms of PCOS:

  • Ovarian cysts
  • Irregular menstrual cycle
  • Too much hair or thinning hair
  • Acne
  • Weight gain
  • Darkening of skin
  • Skin tags.

First symptoms

In late 2012 I had just started my second year of university when I began to experience a dull pain in my lower right side. The pain lasted a few days, gradually developing from the kind of the pain you experience when pressing on a bruise to a sharp spiking pain that would stop me in my tracks.

One night the pain worsened and resulted in a trip to A&E where I was given a pregnancy test to ensure I was not having an ectopic pregnancy and a pain-killing injection. I went home and for the next few hours slept and felt pain-free. I wasn’t asked to attend a follow-up appointment and I put the pain down to a one-off experience.

A couple of days later I started my period and it didn’t stop until 2014. I am not kidding – it lasted a year and a half without stopping.

During this time, I saw countless NHS GPs in my home-town of London and my university town of Brighton who each said things like: “it’s probably just your periods regulating themselves” (it had been a decade since I started them), “maybe it’s endometriosis” (which can render women infertile), “I’m sure it will sort itself out, it just takes time”.

I was not given follow up tests and I was given five or six blasé diagnoses from different doctors. I was not over-weight and as this is one of the more obvious symptoms of PCOS, it prevented me from being diagnosed quickly. I was told, “you can’t have PCOS because you aren’t fat.” In fact, the stress and anxiety, which is synonymous with this syndrome, had caused me to lose half a stone.

"40% of women needed 10 appointments or more before being referred to a specialist"

It felt as if no one was listening to me and despite my insistence that my anxiety and irregular periods were linked, the doctors dismissed me. I felt ignored.

I know I’m not the only person who has experienced these challenges. The AAPG details a number of patients’ stories and reveals 40% of women needed 10 appointments or more before being referred to a specialist.

One patient with endometriosis said: “This disease has such an enormous impact on lives, this is not appreciated by healthcare professionals. The impact of a life lived in pain, compounded by difficult side effects of hormonal treatment, infertility etc is simply not understood. Women feel incredibly alone and unsupported.”

Another revealed, “I was dismissed by my GP so many times over so many years with so many symptoms that added up to endometriosis that I started to even doubt myself. I felt like I was going crazy because no one would take me seriously.”

How can healthcare professionals improve?

One of the worst things my GPs did was to fail to understand the impact of constant period, chronic pain and increased anxiety. During this time, I missed university because I couldn’t sit through an hour-long lecture or seminar without worrying that I was going to bleed through my clothes. I woke up regularly in the night covered in blood or worried that I was going to be covered in blood.

This meant I didn’t sleep properly for a year and a half. I was so exhausted from a combination of sleepless nights, heightened anxiety and low iron levels caused by constant bleeding, that on some days I couldn’t get out of bed or walk down the stairs without bursting into tears.

Adding to this, I was in my final year of university and I was worried about how I would finish my degree while feeling like this. I was also confused about the impact on my fertility and experienced significant pain and cramping, which led to multiple visits to A&E.

"The AAPG asks healthcare professionals to adhere to NICE guidance across the board – currently, the guidance is only implemented variably"

When you experience these kinds of problems and the GP tells you “it will sort itself out”, refuses to give you cervical smear tests because you aren’t yet 25 and tells you that you don’t need a scan, it feels as if they are telling you to stop complaining. You tell yourself to get used to living like this. You feel like you are burdening the all-ready overstretched NHS by making a fuss about something all women experience in their lives – periods.

You also resort to Google and trust me when I say Googling symptoms, especially these types of symptoms, whilst in the depths of anxiety is not a worm-hole you want to get sucked into.

The best thing a doctor can do for a patient experiencing these symptoms is to be sympathetic. A simple “I’m sorry you are experiencing these symptoms, we’ll get to the bottom of this” makes all the difference.

Rushing a patient through an appointment or dismissing what they have to say as a common problem is damaging and can stop women from continuing their search for diagnosis and treatment. This can have long-term consequences for a woman’s health and fertility.

Stop women suffering in silence

In 2014, I visited a private gynaecological consultant. In one half an hour consultation he changed my life. He gave me a scan and a diagnosis – PCOS. He prescribed me a different birth control pill, a low dosage level of diabetes medication to regulate my insulin levels and told me to try a low glycaemic index diet. After six weeks my symptoms stopped in their tracks.

I am lucky. I was a recent graduate with no money but my parents could help me pay for a private appointment. For many women, this is not an option. 

The AAPG makes several recommendations for NHS doctors treating women with gynaecological issues, illustrating the significant impact small changes can make on patients’ lives.

Although their study focused on endometriosis and fibroids rather than PCOS, the symptoms can be similar and the advice for making improvements applies to all women’s health issues of this nature.

 "Persevering through countless doctors’ appointments and finally receiving a diagnosis was the best thing I have ever done​"

The group recommends better information resources and calls for an endorsed best practice pathway to streamline women quickly into the right care. Additionally, they recommend multi-disciplinary teams to ensure all women are able to access all treatment.

They also ask healthcare professionals to adhere to NICE guidance across the board – currently, the guidance is only implemented variably.

Experiencing these symptoms can be scary for patients. My message for other women is to know that you are not alone, and your symptoms can be managed and controlled. It’s been four years since my diagnosis and six years since my symptoms first manifested.

Persevering through countless doctors’ appointments and finally receiving a diagnosis was the best thing I have ever done. Although the experience of visiting so many GPs was stressful, now my symptoms are under control and my PCOS no longer impacts my day-to-day life.

At Blue Latitude Health, insight provides the foundation for all the work we do. We pride ourselves on our rich journey maps, which highlight barriers to treatment and opportunities to improve the patient experience. Contact simon.young@bluelatitude.com to find out how we can help you.

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