A PCOS Story
in 2016, I joined a not-so-exclusive club of women and became part of the 1 in 5 who have Polycystic Ovarian Syndrome. After a extended duration of missing periods, heightened anxiety and the oh-so-fun adult acne, I suddenly became a statistic and finally had an answer for all the disruption that was occurring in my body, courtesy of some haywire ovaries and out of control hormones. It's been a frustrating, emotionally draining and slow journey, but over time my symptoms are dissipating and I'm finding ways to manage, heal and work with my body.
So what happened and what did I do to help reverse my symptoms? Let me fill you in...
Want the low-down, stats and medical details on the condition? Go here. The Beginning
I first went on the pill when I was around 17. Prior to that my periods were pretty normal, a bit of a non-event really. I didn’t get any PMS symptoms, cramping or excessive pain, it was light and short, – really just a bit of an inconvenience. I had gone onto the pill for contraceptive reasons and stayed on it for the next 4 years because it was convenient. I liked to skip my periods and feel like I had “control” over my body. The only thing I was managing, health-wise, were intense hormonal and tension based migraines, complete with nausea and vomiting, that would last for days that I believed eased over time by taking the pill and ‘balancing’ my hormones.
At 21 I came off the pill when moving to London, as I couldn’t get the exact same brand over there and for the next 3 years I went on and off again as I tried to find a pill that suited me. During this time, I began learning more about alternative medicine and practices – regularly seeking acupuncture to help with my migraines and stress - and when raising the issue of the pill with both these practitioners and my GP, I understood that my migraines (with aura) actually placed me in a high risk category for stroke.
So, at 24 I came off for good. After almost 7 years of taking artificial hormones, I simply stopped at the end of one cycle. No groundwork, no changes to my lifestyle or diet, I just ditched the packet and stopped popping that pill each morning.
The Warning Signs
Hormonal Disregulation
I had read about side effects and what may happen to my cycle, but to begin with, the first 6 months or so, things seemed okay. I still got my period – I wasn’t tracking it very well, but it was somewhat regular and that was fine by me. Then whilst away on holiday and looking through some photos I was shocked. I had lost a load of my hair along my hairline – almost like I was receding and the quality of my hair completely changed, it was constantly super greasy, and I would stand in the shower and have clumps of it falling out it my hands as I washed it. I distinctly remember staring at my partner in horror after combing through my wet hair at the sheer amount that was falling out. First sign.
Acne
Then the few regular spots I would get here and there suddenly flared up into painful bouts of cystic acne. Deep, sore cysts under the skin along my chin and jawline, that I would just feel like lancing with a needle to release the pressure. This spurred a difficult experience – I was teaching regularly and my self-esteem completely plummeted. Never a believer in wearing a lot of makeup, particularly whilst working, the thought of covering it to teach wasn’t going to fly – non the less I would cry before leaving home in the morning at the thought of being about to stand in front of people and face them with visibly sore skin.
Pain
Fast forward another 6 months and suddenly my increasingly space periods began to get more painful. Excruciatingly painful. I had never experienced cramps, lower back pain, or any other side effects before and suddenly I was every period pain ad rolled into one. With duration, heaviness and pain levels radically different to my old “normal”, I began questioning what was going on – whilst reaching for the strongest pain killers I could get OTC.
Emotional Distress
I’ve long dealt with anxiety. I get stressed easy, overthink and empathetically absorb a lot of energy, but I began having stronger bouts of anxiety now, worrying more, feeling stressed out and overworked. Exhausted and tired all day long, come the evening I couldn’t sleep, so would lay awake at night - which I now know are classic tired but wired symptoms of a burnt out adrenal system.
Luckily, I have long been intuitive and in tune with my body and adding all these things up became like a big red flag to me, alarm bells ringing that I needed to check out what was going on. I began to do a little casual research about period pain and changes in your cycle and then on one episode of a podcast I regularly listened to, I heard an interview with Alissa Vitti – The Flo Guru, as she described her experience with PCOS. Our stories didn’t quite match, but I saw the similarities in symptoms and something lodged into my brain. I began to start tracking my periods using Clue and things began to get a little more worrying from there, soon my cycle began getting longer in duration and much more irregular. I would never know when, or if, my period was coming and it heightened my anxiety tenfold.
I had another quick google and scan of Vitti’s site and decided it was time to head to the doctors.
The Diagnosis
I went to my local NHS GP and was met with an elderly and impatient male doctor. I listed and explained my symptoms, (in tears I may add, #hormones), and gave in-depth details on my last cycles. The first response? Go away and monitor your cycle some more. Not taking it for an answer as I had already showed up with 6 months worth of tracking, I demanded blood tests and ultrasounds – thinking perhaps this was a hormonal imbalance or thyroid issue and asking for a referral to an endocrinologist. Whilst the doctor didn’t agree with me, he did allow me to have scans and blood works done.
So off to the scans I went, with little information on what to expect. I had the scans and was watching the screens intently. The doctor asked me a few questions, had a good nosy around and then told me to go see my GP for results when the blood tests came back. I questioned whether she had seen any cysts on my ovaries. The response “oh yeah, there’s loads on each of them”...“so I have Polycystic Ovarian Syndrome?” I asked, shocked. “Yes, your ovaries are polycystic but you’ll need the blood test results to confirm this”. The end. I was absolutely floored. That was it. That was all I got. In a blur I walked outside, text my partner and called my mum, who was on the other side of the world, in a flood of tears, remembering only the worst of the short bit of reading I had done on PCOS – “I’m never going to be able to have kids”.
Calling back into the doctors, this time requesting for a female – in the hopes of a little more understanding and compassion – I went in for my results and was greeted with casual disregard that astounded me. Going through my first round of blood tests it was apparent that my Insulin levels were raised, I had slightly above average androgen levels and the scans demonstrated that yes, there were numerous follicles on each ovary (though no specific count was done or recorded here). These results, plus my symptoms, were enough to land a diagnosis of PCOS.
However, she agreed – I wasn’t the classic profile attributed to PCOS, I was fit, young and healthy, I ate well and moved often, so there was no further explanation of why this was happening to me.
The Conventional Medicine Answer
Onto a solution: A pill-popping combo of birth control pill – now understood to be contraindicative of my migraines, the contraceptive implant – I’ve just told you I don’t want to take artificial hormones, Metformin to control insulin levels – a medicine used for diabetics to control blood sugar levels, Fertility drugs for when I wanted to get pregnant – generally a last case option and the best part of it all, anti-depressants “for my mood” –the exact terminology the doctor used to describe the depression and anxiety I was experiencing at the time.
I was shaking with tears and anger by this stage, I had received no further information on the condition, only that it was “super common, lots of women have this and deal with it” and the drug filled solution I had been offered.
With all due respect for Western medicine, my intuition here was screaming NO. I just couldn’t compute it, I was young, I was healthy, I looked after my nutrition, I ate well, I didn’t drink excessively. But I was stressed, and living in a city filled with stress, toxins and hustle. Surely the only answer wasn’t taking drugs everyday for the rest of my life. Without satisfactory responses from Western medicine, I walked out the door and took matters into my own hands.
So, What Did I Do
Reading + Research
I went straight home and ordered the book, Woman Code, that claimed to have helped thousands of women navigate an array hormonal disorders. As I poured over the pages I read stories that sounded so similar to mine and the guide recognized every symptom I was experiencing. As I was pulling nuggets of information out, I inherently knew I was gearing up to heal my body and I was going to need a team of supporting practitioners who would point me in the right direction.
Found A Support Team
After researching the best endocrinologists and alternative therapists, I settled on meeting with a Naturopath/Herbalist who had experience dealing and treating PCOS. The majority of that first session was me crying uncontrollably trying to figure out why this was happening to me. This first session did a few things – suddenly I had another human, with experience in the condition who was willing to help, which calmed me immensely. Secondly she gently explained the whole system – a refresher on the menstrual cycle – and explained what was happening with my hormones, or more correctly what was going awry. Then she began dissecting aspects of my life as a whole. Quickly we reached a few conclusions:
I had adrenal fatigue and I was burning out, I was tired, but wired, and was loading up with caffeine to help push through long days, which was sending my hormones on a crazy circuit every day.
I wasn’t eating poorly, but I wasn’t making the best decisions to help my body. Looking at my blood type and my intolerances, as well as my movement patterns, I needed to shift the carb levels, increase my good fats and find nourishment from seafood and nutrient dense veggies – this was a shift for me from eating to fuel aesthetics and performance, to eating to nourish.
I wasn’t sleeping well, and would wake up feeling exhausted, hinting that my cortisol levels were out of whack and circadian rhythms off kilter, so we focused on including more meditation and winding down in the evening.
And then I was overtraining, I was doing too much HIIT and high intensity weight work, plus an active job, plus cycling/walking everywhere, and constantly demonstrating classes. I wasn’t getting enough recovery and taking care of my body – my efforts were focused on looking for that all-or nothing, endorphin buzz, but I wasn’t tuning in to the quieter signal of downtime and rest.
All of this lead to a primal survival mode of fight or flight, I was fighting against my own body as it was calling out for rest and now my reproductive system just decided it had had enough and shut itself down for survival.
Began Eating To Nourish
Being first in the dance and then the fitness industry, I had always viewed food as a source for energy, in those simple terms of intake in and expenditure out. I had played with macro’s and fuelling for performance and aesthetic previously, but now I needed to eat to truly nourish – not just because it would fit with a quota or ratio. As much a mental shift as a practical one, this meant finding high quality sources, reducing and eliminating any added toxicity (which was contributing to the higher androgen levels) – via way of GMO’s and pesticides – of non-organic sources and became more diligent in knowing where and how my food sources were treated before they arrived on my plate, as well as constantly reminding myself that everything I ate had the opportunity to add to hurt or heal my body.
Starting To Heal The Gut
With the gut-flora playing a starring role in keeping hormones in optimal balance I needed to heal years of food intolerances and IBS symptoms that had messed around my microbiome. I began reducing or removing any highly inflammatory foods (read more on FODMAPS) and added in supplements – such as probiotics, glutamine and silica – designed to help soothe, heal and repair.
Adding Select Supplements Into The Mix
At this stage my body wasn’t functioning optimally and it wasn’t managing on its own. I needed extra support, so supplements came in. This was to assist in unloading the liver for the detoxification process, aiding the kidneys, stabilising cortisol levels and circadian rhythms, helping the healing of the gut and supporting the hormonal system. I trialled many different forms, testing strengths and dosages, timings throughout the day, different sources and brands and was flexible in allowing my supplementation to change as my symptoms were.
Herbal Medicine: Utilising The Power Of Plants
As I was seeing a herbalist, I started taking herbal tonics made specifically for my symptoms, which I would take 3x daily and another separately at bedtime to help sleep. These natural mixtures were designed to help support my healing and due to their liquid nature were more readily digested and absorbed into the body.
Cleaned Out The Beauty Cabinet
If I wasn’t going to let toxins enter my body via my food, why would I bathe in it and allow it to enter my blood stream dermally? The skin is our largest organ and it absorbs much of what we put on or over it, therefore I made small shifts to clean, organic beauty products and toiletries.
Regular Acupuncture
Already a firm fan of acupuncture and having used it previously to treat migraines, anxiety and stress, when researching PCOS and finding the positive link to acupuncture treatments, I quickly sought out a practitioner who not only had experience with hormonal imbalances, but really took the time to answer my million questions, listened to my symptoms and stories and helped me understand the Eastern approach to this disorder. Not only do I truly believe this has helped rebalance my cycle, but an hour a week of lying down and chilling out does wonders for someone who finds it difficult to stop and stay still.
Shifted Exercise Routines
In a bid to balance my cortisol levels, I need to drastically look at my exercise patterns. Having always been super active, it was difficult for me to understand why I still couldn’t keep to the extent, duration and intensity that I always had. But this was an intervention where I was forced to understand I was stressing my body out further and not taking enough time to recuperate, recover and protect my nervous system. In the acute phase I moved away from HIIT and cardio and shifted to slower mindful practices. I still craved a sweat, so I would be very careful about when and how, making sure I unwound properly afterwards. This meant no longer than 45 minutes at a time, with a balance of sweaty and soulful. For a long time, that looked like Yoga, Yoga and more Yoga, and exploring different forms of relaxation such as meditation, yoga nidra and yin yoga. Reducing time in the gym lead me back to swimming, Pilates, dance based sculpting and walking.
Reduced Work Patterns
This was perhaps the most difficult area to address and the point I had the most resistance to changing. By this point I was teaching my heaviest load, creating studio programmes, developing methods and pouring out all of my energy to my students. I was trying to cram in as many sessions as possible, not switching off when I wasn’t there, not able to disconnect the constant stream of thoughts of how to help, how to improve, what to plan and schedule. I would wake up in a panic and rush out the door in the morning to early sessions, teach back to back, barely stopping to breathe (but guzzling coffee). Then race to the gym to train myself or attend classes, squeeze in some admin work in the afternoon, before teaching all evening. I knew I needed something to change, but I resisted against dropping from the hustle, feeling a pressure (self-inflicted) to be giving my all to others and sticking to responsibilities. However, with a load of support, I began slowly dropping some classes, looking at what worked for me – time wise over the day, when I could rest, even how to commute to classes – from being active and cycling or walking, to taking transport to recover energy. As this progressed though, it became evident to me I needed a clean break, I couldn’t pour out anymore and was feeling like I wasn't offering the absolute best to my students, which wasn’t acceptable to me.
Slowly Eliminated Coffee + Alcohol (For A Period)
As the epi-centre of detoxification my liver was stressed out COMPLETELY. Whilst I was feeling so ill and tired it was easy to cut out alcohol for a period, which helped greatly. What was harder, was giving up coffee. As my absolute vice, not only did I desperately need its pep, but I absolutely love the taste and ritual of having a coffee. Instead of going cold turkey, I cut down to 1 and slowly weaned off. I stayed clear for a period of a few months and did notice a change in my energy levels sustained across the day, but I did miss the practices of enjoying a great cup of coffee - so I do drink it now, but I have a few rules: 1. Not first thing in the morning. 2. Never on an empty stomach. 3. No more than 2 a day.
Prioritised Sleep + Rest
In my years of striving for health, I had overlooked a key aspect of my lifestyle – sleep. Having always been a light and restless sleeper, it was time now to make sleep, rest and recovery a priority. Not only was I incorporating more active forms of recovery (yoga nidra, acupuncture etc) but I reduced my active time throughout the week and weekends and took things MUCH slower. This meant saying "No" to a lot more social events or engagements and implementing sleep positive routines and supplementation to help the quality of my sleep.
Moving Forward
I went through months of trial and error, most days feeling like I was rattling from the supplements and tonics I was downing. Interestingly as I began diving further into examining my cycles, they expanded and grew longer, from 35 days, to 51 days, to suddenly disappearing altogether. My mood was plummeting, levels of anxiety were heightened and I slumped into a low depression. It seemed the deeper I got in trying to fix myself, the worst I was getting, and this was a crux point – I had become so obsessed with healing myself, I was blocking myself from getting better. As everyone around me was telling me to take it easy and be careful, I was suddenly focusing on the wrong things, telling myself “I was sick” and needed to rest. But in doing so, I was reinforcing this “illness” and manifesting more stress, worry and as a result, symptoms.
Feeling very much like I was at the edge of despair and struggling to get through each day, luckily we reached a point when we were due to go back to Australia for a month long holiday and visit. This was exactly what I needed - a break from my surroundings, time with family and loved ones, and a whole lot of sunshine, salt water and forced relaxation.
Whilst at home I met with trusted doctors and specialists to have further blood tests and scans redone – almost 5 months after the initial tests - to see what we were dealing with. Here we found some interesting results, in my bloods I was scarily low on iron, my hormones were still slightly off, but the androgens weren’t too high and my insulin levels were satisfactory, indicating that insulin sensitivity had increased. A more detailed ultrasound indicated the exact number of follicles I had on each ovary –15 on one, 17 on the other – which classically determines they are polycystic (over 12 is the classification), but unfortunately as we didn’t have a specific number from the first scan we have no comparison if this was better, or worse, than in the months prior. Armed with more knowledge, understanding, an iron infusion and a month of recovery, I miraculously had my first proper cycle in 139 days.
During this time, I had a very clear realisation on what was occurring for me, this condition was worsening in direct relation to my environment and stresses. I wasn’t managing stress, I wasn’t happy with my work, I was struggling with the pace and climate of London and my body wasn’t working as a result. An accumulation of chronic stress on my body was causing these reactions. At this point, with the support of my incredible partner and team of practitioners urging me to prioritise on my health and happiness, I quit my job, reassessed my options and took the time out to focus purely on my health and wellness.
Two Years On
It’s now July, another 6 months on since I had my first cycle again and in that time I started a dream job before then shifting paths and relocating to Singapore with my partner. I’ve had extremely stressful situations of uncertainty, moving, constant change and a lack of control of my circumstances at points and certainly my health has suffered at times. But by managing to keep on top of my supplementation, diet (as much as possible whilst travelling), my movement ratios and maintaining mindful practices, my symptoms have settled, my cycle is slowly, slowly, becoming more regular and I’m able to look back on that super rough patch, and see it as a pivotal learning point – as a key to recognise when things do become slightly off kilter and address them as quickly as possible.
I will shortly be having another round of scans and blood tests to see how I’m tracking, but even without these, I definitely feel my symptoms are subsiding and I’m on a path to remission. It’s a slow, and at times super frustrating, journey, but I am grateful that each day I have the options to help nourish and heal my body through my nutrition, movement and lifestyle choices.
Far from the sheer panic and anxiety that overwhelmed me during the first months of confusion after my diagnosis, now I feel armed with knowledge on how to help myself, and rather than think “why me?”, I think how lucky I am I was in-tune enough with my body to know something was up and acted upon this early, whilst I have the luxury of time to help heal, so I can reverse my symptoms and stay optimistic for the future.
Want details on my holistic practitioners or recommendations? Drop me an email rosie@rosiehope.com