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Health

PCOS: symptoms, advice and coping strategies, from women who have it

September 26th 2017 / Anna Hunter / 0 comment

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With women such as Victoria Beckham and Jools Oliver talking about polycystic ovary syndrome, the conversation around the condition that affects one in 5 of us, is finally opening up. Two sufferers explain how to spot the signs, weather the side-effects - and ultimately feel better

If life was simple, women would have a perfectly punctual, painless and light monthly period, clear skin-post teenage hormonal upheaval and ovulate like clockwork, but sadly, for a fifth of women in this country, polycystic ovary syndrome (PCOS) causes physical and emotional misery for much of any given month, and very often periods fail to appear at all. Add in excessive hair growth, acne, thinning hair on the head, weight gain and fertility problems, and PCOS can rob sufferers of everything from self-confidence to chances to start a family.

The latest research also establishes a link between metabolic disorders and a new category of male sex hormones, androgens, that are implicated in the development of PCOS. These hormones appear to elevate the risk of metabolic issues, obesity, diabetes, cardiovascular disease and high blood pressure among PCOS sufferers, and the reasons for this still remain a mystery. Yet, for women suffering, the daily reality of PCOS can be all-encompassing, and involve managing multiple long-term conditions.

The outlook isn’t entirely bleak, however, and with women in the spotlight such as Victoria Beckham, Jools Oliver and Daisy Ridley speaking out about their own experiences of the syndrome, the conversation around PCOS is finally opening up. From dietary changes (the British Dietetic Association recommends adopting a low GI diet to balance insulin levels) to mental health support, sufferers needn’t suffer in silence. To mark PCOS Awareness Month, we spoke to two women about how PCOS has affected them, from initial doctor's’ appointments to day-to-day impact, and discover how they manage their condition and stay positive.

Lily Soutter, a nutritionist, was diagnosed with PCOS in her early twenties

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“I’ve always had chronic acne around my chin and nose, very greasy skin, hair where it shouldn’t be (glamorous I know), mood swings, and irregular periods. The signs that I might have had PCOS were there for a while before it was officially recognised.

“My degree in human nutrition meant that at the time that I was diagnosed I was very familiar with PCOS. It’s easy to self-diagnose and convince yourself that you have every illness that you see on Google, however I just knew something wasn’t right and pushed for blood test and scans which led to a diagnosis.

“When I was younger I was desperate to get my symptoms sorted, especially on account of the acne and excess hair that often accompanies PCOS. I saw one expert after another trying to make sense of what route to take in terms of treatment.

“I first went to a dermatologist who prescribed spironolactone, which acts to lower levels of male hormones. I also tried numerous topical treatments, however, for me they had no effect.

“Then I went to a private gynecologist who put me on metformin and HRT for a month, which I quickly decided to stop. I also tried Co-cyprindiol, a contraceptive pill which is an antiandrogen- another medication that lowers male hormone levels. Finally, the NHS also gave me lifestyle and dietary advice, which was inline with my training. I was really impressed that they took this angle.

PCOS has been a huge motivator for following a healthy diet and lifestyle

“Many women suffering with PCOS may have a degree of insulin resistance. As such, I follow a diet that balances blood sugar as much as possible. This has been my biggest lifestyle change since diagnosis.

“The greasy skin and acne element has definitely affected my self-confidence. Also finding hair on your chest is never fun! Fertility is a big worry for me too.

“PCOS has without doubt had an effect on my mood. Low oestrogen has been part of the package for me, which has resulted in hot flushes, irritability, sleep problems and mood swings around my period.

“I’d assure other sufferers that having a diagnosis is a good thing, because those frustrating symptoms will finally make sense! Diet and lifestyle factors can massively help to manage PCOS symptoms, therefore I would recommend that you book an appointment with a nutritionist or dietician. A gynaecologist and endocrinologist will also let you know which medical treatment (if any) would be best suited for you.

“Many clients come to me with PCOS, and having the condition myself spurs on my passion to support them, I feel that I can completely empathise with what they are going through.”

Lily’s coping strategy: “It sounds cheesy, but my coping strategy is positive thinking. Every time I get frustrated with my symptoms I remind myself that PCOS has been a huge motivator for following a healthy diet and lifestyle, and I will reap benefits from this in other ways.”

Lily graduated from Newcastle University with a BSc (Hons) degree in Food and Human Nutrition (AfN accredited) where she was awarded with the Sage Faculty for Excellence Scholarship. She then went on to gain a Nutritional Therapy Diploma from the Institute of Optimum Nutrition. Alongside media work, she sees clients from her clinic in Chelsea and from the Portobello Clinic, a private medical practice based in Notting Hill.

Angelique Panagos, a nutritional therapist, was diagnosed with PCOS at the age of 27

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“It took a long time to get diagnosed, although I knew something was not right with my hormones. For starters, I hadn’t had a period for months on end! I put it down to hypothyroidism at first, but I kept having this niggly feeling that there was something else at play, and I consulted endless doctors. It wasn’t until I was around 27 years old when I first had a proper diagnosis, the actual ‘well, you know you have PCOS’ diagnosis. No, I didn’t know!

“What I did know, though, was that I was a total hormonal wreck. My cycles were 90 days apart, but I had PMS the whole time and was a total nightmare to be around. My periods took my breath away, and not in a good way. I had terrible cramps, clots and heavy bleeding when they finally did come. I would feel nauseous for the first few days, too, so much so that I had to go home from work on occasions. I put on a lot of weight and had what felt like a tube around my waist as there was so much belly fat, which no amount of exercise could shift. I also had an insatiable appetite and cravings for carbs, so that didn’t help the rise of the belly bulge. I had terrible insomnia and headaches most days. I developed skin tags on my neck and my hair also started thinning to the point that it was quite visible near the front hairline. All of these things left me feeling deflated and self-conscious, and definitely affected my self-esteem.

“I had recently embarked on my studies and had attended my first lecture on female health. During that lecture, I realised that I knew very little about my body and female health, and that was the catalyst for me pushing for more tests to be done at that time – it finally dawned on me that not menstruating for 90 days at a time was not ‘normal’ as I was once told.

“I remember feeling alone, scared and not able to see a way out. I went to see a few specialists, and one of the consultants told me the I needed to ‘learn to live with my symptoms’. I didn’t find that helpful, as you might imagine. I knew little about PCOS at that stage, just that I had it, it affected me and I needed to know more. ‘Dr Google’ was really all doom and gloom about it at that time, there was definitely a lack of good information and education around it.

“In terms of medication I was offered the pill and metformin – both common forms of treatment. I did not want to take the pill because I saw it as a sticking plaster, short-term relief with a fake period. When I came off it, my periods would still be irregular. The thing is, the pill doesn’t ‘fix’ the underlying cause of PCOS, and as I discovered, it doesn’t work for me anyway. I took the pill for a while in my early 20s for three months and cried solidly the whole time - I was already so moody, so this was not ideal! I declined the metformin, too, after looking into it and understanding what was driving the PCOS. Instead I made a commitment to myself to change my lifestyle, get my blood sugar and insulin under control and lose weight before taking another pill- I was already on thyroid replacement medication.

PCOS can bring out the hormonal seven dwarves: Grumpy, Scratchy, Bitchy, Bloaty, Sleepy, Moody, and Spotty.

“Without knowing it at first, PCOS has been a major player in determining my life path. I was fed up of feeling low-grade terrible every day, and I decided to study to qualify as a nutritional therapist to help myself feel better. It ignited a passion within me to delve deeper into female health and I thought if I could ‘fix’ myself, I would be in the best position to help others.

“We do know that PCOS involves a combination of genetic and environmental factors, and many researchers believe it is caused by excess insulin produced in the body. Although we cannot change our genes, we can control how we lives our lives. What we know about the fascinating world of epigenetics is that diet, stress and lifestyle can play a major role in how our genes express. For me, cutting back on sugary foods and refined carbs, favouring wholegrain foods, getting my greens and eating healthy fats made me feel better in myself. Adding in some daily movement and learning techniques to help destress, which include everything from meditation to going for a walk in nature to deep breathing, really help.

“I have been through a lot with PCOS - I am the girl who started menstruating at ten years old and dreaded that time of the month. I’ve also suffered two miscarriages. Yet, I am also the woman that managed to sort her hormones out and carry full term, giving birth to our beautiful baby girl Isabella in February this year. Because of all of this, I am able to draw on my own personal experiences when working with clients. I have been there, I know what it feels like, and how frustrating it can be to not get any answers. I know how hard it can be to suffer side-effects of medication and make lifestyle changes. I also know what it is like to feel better after all of this, both physically and mentally.

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“PCOS affected my mood immensely. I see this time and time again in clinic – PCOS, as with any hormonal imbalance, can lead to mood swings, irritability, anger, anxiety and even depression. It can bring out the hormonal seven dwarves: Grumpy, Scratchy, Bitchy, Bloaty, Sleepy, Moody, and Spotty.”

“That said, the hardest part of having PCOS for me has been my fertility journey. Most of us spend much of our sexually active lives trying not to fall pregnant, so when the time came to starting a family, realising that it may not be that easy is a hard pill to swallow. Plus, experiencing two miscarriages was really tough, it broke me. I feel like I wear the scars of PCOS and hormonal imbalance. But through all of this, I am grateful for the lessons learned, and for my body for the amazing jobs it has done, despite challenges.

“The advice I’d give to women who think that they’re suffering from PCOS, or have just been diagnosed, is that it’s going to be ok, but first you need to be gentle with yourself. I know it’s scary and can feel lonely, but you are not alone. With that in mind, find your tribe. It doesn’t have to be family or friends, it can be a social network or support group – we are so lucky to have these today. Sign up to a related newsletter that speaks to you or join a PCOS community, but please make sure that you are getting the correct advice from qualified experts and official bodies.

Angelique’s coping strategy: “I’d say I follow an 80:20 lifestyle has been a game changer for me. I stick to my own healthy eating principles 80 per cent of the time, while allowing for a few of life’s indulgences in the remaining 20 per cent. This approach really works for me. It takes the pressure off having to be “perfect” all of the time, and seeing as reducing stress is one of the best things you can do for your health and hormonal balance, it’s practically therapy.”

Angelique is the author of The Balance Plan, a step-by-step lifestyle guide to living with and addressing female hormonal health issues. Angelique completed her nutritional therapy training at the renowned Institute of Optimum Nutrition in London. She is registered and regulated by The British Association for Applied Nutrition and Nutritional Therapy (BANT) and is a member of the Complementary and Natural Healthcare Council (CNHC). In addition Angelique is an Institute for Functional Medicine (IFM) AFMCPTM- UK graduate.

If you, or someone you know, suffers from PCOS, or suspects that they might, you can seek support and advice from PCOS charity Verity

Follow Lily on Twitter @lilysoutter and Angelique @apnutrition

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