Glasgow woman suffering with PCOS told everything was 'normal' prior to diagnosis
PCOS, also known as Polycystic Ovary Syndrome, is a common gynaecological condition that affects one in 10 people assigned female at birth in the UK.
At present, there is no known cause or cure - simply ways to manage the condition. But as with all health issues, it comes with its own struggles that not many understand - including doctors which makes it more difficult to diagnose.
As we're now in September, Glasgow Live wanted to talk to someone from the city who was suffering from the condition to show the reality that 1 in 10 people suffer from as part of PCOS awareness month.
But first of all, what is PCOS and what are the symptoms?
Explaining what the condition is, Meg Wilson, Consultant Gynaecologist said: "PCOS is a common condition caused by a hormonal imbalance from the ovaries. Having polycystic ovaries on its own isn’t enough to diagnose PCOS as clinicians will use the Rotterdam criteria to diagnose."
In order to be diagnosed, you must have at least two of the following:
- Irregular periods or no periods at all: Meaning your ovaries do not regularly release eggs (ovulation).
- Excess androgen: High levels of testosterone hormones in your body which may cause physical signs such as excess hair (hirsutism) – usually on the face, chest, back or buttocks
- Polycystic ovaries: Your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs however despite the name, you do not actually have cysts to be diagnosed.
Other symptoms may include:
- Difficulty getting pregnant as a result of irregular ovulation or failure to ovulate
- Weight gain
- Thinning hair and hair loss from the head
- Oily skin or acne
She continues: "PCOS is a spectrum rather than a single diagnostic entity. Many women with PCOS are slim, some women will have menstrual symptoms and some women will have androgenic symptoms. Some women may just have polycystic ovaries on a scan but no symptoms or hormonal abnormalities at all.
"There is still much to discover about PCOS which will hopefully be answered by medical research in the future. This means that we cannot always give an explanation about why some women develop this condition and why some treatments work and others do not which can lead to confusion."
Because of the hormone imbalance an individual may experience, it may also interfere with the body's ability to manage sugar leading to insulin resistance or even type two diabetes.
There is often a stigma attached to the medical condition that people with PCOS must be overweight and that is the root cause of their issues - this however is far from the truth.
Meg Wilson said: "While there is often a stereotype of women with PCOS as being overweight, the condition affects women of all shapes and sizes. Victoria Beckham and Jules Oliver, for example, are two famous women who have been vocal about having it.
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"For anyone diagnosed with PCOS, it’s important to consider the associated long-term health issues. Whilst some of these can be exacerbated by being overweight, all PCOS sufferers are at an increased risk of diabetes in pregnancy, insulin resistance and type two diabetes, cancer risks such as endometrial cancer, cardiovascular issues, sleep issues and depression.
"It may all sound like a poor outlook for women with PCOS, but we see many women who have empowered themselves to deal with their symptoms. They manage their symptoms effectively through an active healthy lifestyle, which feeds into a strong emotional wellbeing, and lead normal lives."
Some individuals with the condition find that their symptoms become apparent during their late teens or early 20s. Speaking to Glasgow Live, Eilidh Cochrane from Glasgow who was diagnosed at 18-years-old said: "It was a long battle to get diagnosed as I probably had it for about a year maybe more going undiagnosed.
"I've always had problems with my periods so I went to the doctors as my periods either weren't coming or when they did, they were extremely sore and I was having random bouts of weight gain and acne.
"When I went to the doctors they did not take it seriously at all. They thought it was puberty so I kept going back and getting blood tests and asked for a second opinion.
"Eventually in September 2018 I got to see a gynaecologist who confirmed I had it."
The 21-year-old who currently studies Midwifery at Edinburgh Napier said that prior to being diagnosed she was originally told that nothing was wrong with her and things would soon settle down.
She explained: "I did a blood test at the doctors and they told me the results were normal but I was still getting these symptoms. So I went to gynaecology and she said that my testosterone levels were raised. We started talking about the other symptoms I was having and she said 'I'm not even going to scan you because it's clear you have PCOS' so it was quite a shock almost because it was kind of like, 'oh I do have it' even though the doctor didn't mention the test levels at all."
"Being told at 18 that you're just going through puberty and your periods are settling when you got your first period at 13, I just knew that wasn't right. It's crazy but I don't think it's very uncommon that people have that experience unfortunately."
As there is no cure just yet, many GPs recommend eating a balanced diet and losing weight in order to help ease symptoms but this isn't so straight-forward.
Another option is to try birth control however this method has come under fire as it's said to mask the symptoms rather than fix or address why the problem first began - especially if no tests were carried out prior.
Other medications or medical procedures for fertility, excessive hair growth and irregular periods are available but only if it's suitable for the patient.
Speaking about getting diagnosed, the third-year student said: "When I got the diagnosis I remember feeling quite happy and relieved because at the time it was like finally I have something to explain what's going on with my body and someone has actually listened and validated that I have something wrong.
"Now that the years have passed, it's still quite tricky. There's not a lot of information or support out there. Even a few months ago I tried to ring my doctor for support because I was still struggling with symptoms and was wondering if there's anything we could do. I just got the same response when I was first diagnosed which was 'well no unless you're wanting children right now'."
In order to help her symptoms, Eilidh said she was advised to go on a diet and exercise but wasn't recommended a specific diet to help her symptoms. Those with PCOS are often advised to avoid sugar, gluten and dairy though these recommendations are not a one-size fits all.
As well as trying to stay clear of high-sugar foods and gluten, Eilidh also tried birth control but found it didn't agree with her so stopped taking it.
Due to the lack of support, Eilidh said it was "really frustrating" because as well as the physical side of irregular cycles, weight gain and pain during her periods, it has also admittedly affected her mental heath.
She explained: "It sometimes feels like it's not going to get better because the support doesn't feel there. It's great you've got these Facebook groups and people to speak to but I think medically such as going to your GP there's still a lot of work to be done and I don't see why I need to be ready to have kids to get help."
At present, GPs and NHS resources are under a lot of stress, however some feel that the lack of support and knowledge has been there pre-pandemic with around 50% of sufferers going undiagnosed.
Eilidh continued: "I think there needs to be more education about it and maybe more of a focus on women's and reproductive health because it seems to be that whatever it is - be it PCOS, endometriosis or menopause - there's a lack of understanding and support.
Discussing how she manages her PCOS now, she cited Facebook groups and their support explaining: "I'm just playing it by ear because I've tried different things and nothing has worked. I'm just trying not to eat too much sugar or gluten but it's so trial and error - sometimes it feels like its working, sometimes I just want to throw it all out the window."
If you think you suffer with PCOS, please contact your GP. For more information and support on PCOS, please visit the NHS website here.