Lisa’s PCOS story
“I was really upset by the way the doctor was so dismissive when she told me I had PCOS, as though it was no big deal that there had been a delay in giving me the correct diagnosis.”
Lisa, 50, pharmacist with a specialist interest in nutrition: a portfolio career including consultancy, medical writing and education
Throughout her teenage years and her twenties, Lisa had no indication that she had polycystic ovary syndrome (PCOS). Although Lisa had always suffered with period pain, she conceived her son with ease at age 30, so it didn’t appear that anything was wrong. However, at age 34, Lisa’s cycle became irregular. During this time, she was also struggling to become pregnant again, so she approached her GP to find out what was going on.
Seeking a PCOS diagnosis
After going for a scan, Lisa was initially told by a fertility nurse specialist that the results appeared normal. Because Lisa was 35 and eligible for fertility treatment, she was given a medicine which stimulates ovulation to assist her in getting pregnant. However, during a follow-up appointment several months later, Lisa found out that the scan had in fact shown her ovaries were polycystic. Given that Lisa had never suffered with acne, hirsutism, or the weight-related issues linked to PCOS, she was shocked to receive this diagnosis from a gynaecology registrar at age 35.
‘I was so angry that nobody had told me, and I was really upset by the way the doctor was so dismissive when she told me I had PCOS, as though it was no big deal that there had been a delay in giving me the correct diagnosis. If I’d known earlier, I could’ve learned about it and tried to approach things from that angle. But instead, I was taking the fertility medicine not knowing that I had PCOS. The doctor then also put me on a medicine for insulin resistance. The aim was for it to help with my fertility.’
Lisa requested to see a consultant gynaecologist, and in the appointment, she finally received some long-awaited answers.
‘The consultant understood that I had a background working as a pharmacist, and he talked to me in a very scientific manner. He explained the pathology of PCOS, what was happening in my body, and how I could change my diet so things would start to normalise. Those were the liberating and empowering bits of information - the why and the how. It was one of the most life-changing doctor appointments I’ve ever had.’
Approaching symptom management
Leaving this conversation with a greater understanding of her symptoms, Lisa felt more confident about beginning her healing journey.
‘My diet changed from that day, and it’s never been the same since. I started eating in a way that was nourishing and satiating.’
A few years later, Lisa made further dietary changes. As well as regulating her menstrual cycle and alleviating period pain, Lisa’s dietary changes have significantly improved her energy levels on a day-to-day basis: ‘Getting rid of sugar crashes has been massive for me because I used to be driven by hunger pangs every 2-3 hours throughout the day. If I had to skip or delay a meal for whatever reason, I’d feel physically unwell. But that’s now disappeared, and I feel so much healthier now I’m 50 than I did in my teens, twenties and thirties.’
Living with PCOS
Lisa took the medicine for insulin resistance for a couple of years but then decided to stop because her lifestyle changes were so transformative.
‘I also made a decision to move on from the fertility thing. I felt fortunate to have one child, so I decided I would count my blessings and draw a line under it. I didn’t know at that point that my PCOS symptoms would completely disappear, but all the scans I’ve had in my forties have shown my ovaries appear normal.’
‘I was quite sad about the fertility issues for a while, as you would expect. It coincided with a lot of women in my friendship group having second or third babies, so that was quite difficult because it was a bit raw to discuss at that point. I didn’t really tell anybody at the time because I didn’t want to have to explain to people.’
Forming a new perspective
Today, Lisa feels a greater sense of acceptance when reflecting on the more difficult aspects of her experiences with PCOS and infertility: ‘Now I feel like having one child was the right thing for my body and my life. I didn’t want to be that much older when I was starting again with another baby. I also changed my job, and started studying for a nutritional medicine MSc when I was aged 37, so I didn’t want to interrupt my studies. I’d have struggled to juggle all of that with a newborn, and it would have been difficult for me to do all the things I’ve done since. I think what I can potentially do now, because I only have one child, is help a lot more women than I would’ve otherwise been able to.’
Since learning about nutritional medicine, Lisa has felt empowered to advocate for not only herself but also others living with health conditions who haven’t had access to such comprehensive advice.
‘Studying nutrition has helped me to understand what may have triggered my PCOS as well as how to manage it. I like explaining my story to other healthcare professionals so that they can pass on information about nutrition and its impact on both the cause and treatment of ill health to the people they are caring for. I’m wary of detailing my recovery process in a social media setting where things can be taken out of context and there’s the risk of people copying you. I can say what I did, but someone else might have a very different experience to me, so it needs to be personalised.’
With the gift of hindsight, Lisa emphasises how remaining grateful and practising compassion towards both herself and others was central to her recovery:
‘It was really liberating to think that I could turn my situation into something positive for other people. I used to have that sort of “why me” feeling, but I started to focus on what I do have, and what I can offer that others can learn from. I’ve been fortunate that in some cases I haven’t had to rely on the healthcare system and I’ve been able to figure things out by myself. But that’s obviously not the norm if you haven’t got a background in healthcare, and it’s really difficult to be in a position where the person you are seeking help from is unable to offer the right advice.’
‘A lot of women spend a long time with symptoms or issues that get ignored and belittled, or they’re a victim of gaslighting. I think that’s why human stories are really helpful, because you don’t feel quite so alone when you can see that somebody else has gone through something similar.’
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