Autoimmune Conditions (like coeliac) are becoming more prevalent in our modern society, but diagnosis and treatment for some are still inconsistent, or lack research commitments. This needs to change, and to do that we need to increase awareness.
September is PCOS awareness month – In the UK currently (according to the NHS) it is suspected that 1 in 5 women are affected, some are asymptomatic, but many suffer from varying symptoms from irregular or no periods, excessive hair growth, oily skin and acne, and weight gain, which can lead to type 2 diabetes and/or high cholesterol.
One way we can increase awareness is to talk about it – so today I’m taking some time to talk to a good friend, Shannon White, who is a sufferer of PCOS, and has been managing her symptoms by doing her own research – and has in turn been supporting others who are also unable to get the advice, help, or in some cases just the diagnosis they need.
Hello, I’m Shannon, 22 years old, from Durham.
I work as a Community Carer – I’m passionate about assisting people to get the most out of their life and to feel as happy as they can be. I aim for days filled with jokes and laughter which is an essential part of care. Being a carer gives you a special type of reward and that feeling is unbeatable.
I’m a cat lover, roller derby player, swimmer, baker and travel enthusiast in my personal time.
It feels really positive to be taking part in a guest blog as it allows me to reflect on how much progress I’ve made and how many conclusions I’ve drawn – so really, thanks for having me!
What is Polycystic Ovarian Syndrome (PCOS)?
PCOS is a multi-hormone disorder and in many cases women don’t actually have cysts on their ovaries.
The Hormones that affect PCOS sufferers are; Androgens, Insulin and Progesterone. All of which are at different levels than would be expected:
- Androgens: Higher levels of the ‘male’ hormones are responsible for acne, unwanted hair growth, thinning hair and irregular periods
- Insulin: A commonly known hormone, that allows the body to absorb glucose into the cells for energy. Those with PCOS don’t respond to Insulin in the same way, and are insulin resistant, the body then creates more insulin – which in turn causes an increase in androgens.
- Progesterone: Low levels of the ‘female’ hormone contributes to irregular periods, as the hormone must increase in order for the uterine lining to thicken, to receive the fertilised egg – but as this process does not occur, this reduces periods in PCOS sufferers.
Metformin, which is a treatment for type 2 diabetes, has been shown to ‘level out’ the hormones through counteracting the insulin resistance, which in turn has been shown to increase weight-loss and in general counteract a range of symptoms in those with PCOS.
This currently isn’t licensed for PCOS treatment in the UK, but as many PCOS sufferers develop into Type 2 Diabetes, for the reasons listed above, they are then given it as a secondary medication. Which then allows them to manage their symptoms – and in turn increase their fertility.
How long have you been diagnosed with PCOS?
I was first diagnosed when I was 16, so around 6 years. However looking back, I probably suffered with symptoms for 2 years previous to getting my diagnosis.
What are your symptoms, and what advice were you given by your GP to help you manage them?
How long have you got? I didn’t realise some of my symptoms were actually symptoms until about a year ago, as there are actually over 40 that can affect someone with PCOS!
I’ll discuss a few in-depth; Weight gain, bloating, fatigue, mood swings, anxiety and forgetfulness are probably my worst symptoms at present. Managing them all at once is difficult especially on top of doing my own research and making conclusions.
I can wake up at 8am and not actually feel functional till about 6pm. Whether i’m laying on the couch all day, or working a 12 hour shift I still feel the same kind of fatigue, which is something I don’t fully understand yet. Some days I wake up feeling on top of the world, full of life and motivation, then literally 2 hours later I feel like I belong under a rock.
Other days I’m not functional at all; I can’t communicate with people in my usual way, I’m nasty, outspoken and angry, everything irritates me, I’m very snappy and emotional for no reason – it turns me into some kind of selfish monster. It’s awful to be around as I can’t seem to control anything or hear myself when I speak. I choose to isolate myself the best I can when I feel like this as I see these as my ‘release’ days.
Maintaining a healthy balance between the two is hard as my mood fluctuates so often.
I occasionally go through phases where I don’t sleep well, which I guess is the main cause of my anxiousness and fatigue. When I’m anxious I try to keep busy. I used it as a method of distraction, as it stops me falling into one of my ‘release days’. I feel the same fatigue but I may as well be productive about things. I keep busy till I burn out, fall ill. It’s sort of a vicious cycle.
I’ve also really struggled with acne, body odour, darkened skin patches, hirsutism (hair growth) and hair loss over the years. My rashes and patches of acne are really painful, bright red and inflamed which make me feel sad and frustrated. My lymph nodes under my arms often swell up, sometimes to the point where I can’t bare to have my arms down or wear a top. When I was at my worst, in the early days of diagnosis, I could go in the bath, wash, get out and still feel disgusting. However, I’ve finally learnt to manage these through trial and error of products, natural supplement remedies and good routines.
It’s a lot of constant effort and upkeep, but something I have to do to feel human. I’m now at a stage where I’m really pleased with my progress.
Periods – what a love hate relationship I’ve got going on here. I don’t really suffer from severe irregular periods, which I love. I don’t have one every month, some are worse than others and I can be on for up to 14 days at a time, which I hate.
Even though I have all these ongoing symptoms, the only piece of medically professional advice I’ve ever received has been ‘you need to lose weight and then your symptoms will go away’.
I’ve never been given any other information on how to actually do it, I’ve simply been told you need to do this. One of my recent thoughts has been – how can losing weight help me to understand the underlying cause of my hormonal imbalance? My understanding is that I weigh more because I have PCOS, but from all my interactions with medical profession’s understanding they seem to see it as the opposite – that PCOS is a symptom of being overweight.
Other topics of advice have ranged from antidepressants to contraceptive pills, all of which I have refused as they offer no long-term benefits to my life or condition currently. These medications are suitable and probably do really help other individuals, but just aren’t for me.
I have recently been prescribed a cystic acne antibiotic medication from my GP, which I’ve not known has existed for the past 6 years. This was not advised or offered, I specifically made an appointment to ask for it as I found out about it from my doing own research online. Even when my GP prescribed it to me they didn’t give me information on how this would affect or help me. As my attitude during the appointment was persistent I can only assume they thought I already understood all I needed to know.
How much does diet and fitness have an impact on your symptoms?
Hugely – they are the two main natural solutions to controlling my symptoms – and if balanced correctly I can reduce my symptoms significantly.
I often fall into ‘slumps’ and make bad choices especially during my ‘release’ periods, as the effort and consistency needed to trial and explore food choices is something I personally find really difficult.
PCOS sufferers can have a lot going on inside their bodies that they are unaware of. By making consistent unhealthy choices, I could be at risk of developing a ‘leaky gut’ which means my body won’t produce enough good bacteria and instead a lot of bad bacteria will spread out of my small intestine and cause chronic inflammation.
My understanding is that if I eat foods that are ‘unfriendly’ (allergic) for my body, then my body becomes inflamed. If inflammation occurs I bloat, feel fatigued and already my cycle mentioned above starts to form. Other signs are my lower legs and ankles become very itchy, my gums bleed, I suffer from headaches and ultimately, the main diet factor, my blood sugar levels spike.
The cells inside my body made to release this spike of sugar don’t connect together properly, so as a result more is stored and I gain a lot of weight quickly. I am also at risk of becoming ‘insulin resistant’ due to my body being unable to balance the amount of sugar present in my blood. Again, it’s sort of a vicious cycle.
Just when you thought things couldn’t get anymore complicated – carbohydrates are also my worst enemy? Every time I consume a carb my body produces three times the normal amount of sugar, making it even harder for my body to process it. The energy produced isn’t half as much in comparison to someone with a good (let’s say normal) metabolism, which can account for my unmotivated fatigue feelings, and explain why it takes longer for my body to recover from high intensity activities.
In my experience, adopting a diet that takes into account the Glycemic Index (GI) of foods I’m consuming is essential for PCOS sufferers. Glycemic Index measures how big your sugar levels spike after consuming certain foods. If I can control the amount sugar in my body that’s a step in the right direction, and it reduces the worry of possibly developing Type II Diabetes in later life.
Furthermore, eating healthier foods and reducing my BMI will help with bloating, acne and mood swings just the same as an individual who lives a pcos free life. However, this doesn’t necessarily rule out my hormone imbalance completely, it could aid it, but it won’t make it disappear.
I could have an ideal BMI showing hardly any symptoms and still have unbalanced hormones. In order for me to successfully balance my hormones, I think I have to eliminate foods from my diet that I’m ‘allergic’ to in order for my body to mirror someone with a functional metabolism. I say ‘I think’ because this is something I’m still working toward.
In the midst of concluding what it is my body is allergic too, I believe PCOS sufferers should aim to do adopt a whole carb, high ‘friendly’ fat, fermented, low GI and whole grain food diet (What a mouthful). Personally, I also do my best to eliminate dairy from my diet as my personal studies have proven that I feel more motivated, less bloated and fatigued when I don’t consume as much. I very rarely drink tea, coffee and milk but I do still eat cheese, yoghurt and meat. I have recently eliminated bread and now opt for whole grain alternatives to bread, rice and pasta. I try to stay away from all refined foods, cereal, juices and gluten free substitutes as they are all packed full of sugar and are ‘unfriendly’.
This all seems to be having a positive affect on my outlook towards food.
Managing your diet can be daunting; reading 100 blogs and websites that say different things can be overwhelming. There’s plenty of information available suggesting numerous different ratio, keto, carb free diets, links between PCOS, gluten, dairy and soy products. I don’t believe there is one set answer – rather trial and error is necessary for an individual to establish what foods they are ‘allergic’ to in their bodies. I found experimenting with a couple of changes at a time has been the most rewarding and beneficial.
I look at diet and fitness as the one and the same – If I do one without the other, especially in my case, I may as well be running backwards. Fitness isn’t something I’m great at but in the last 4 years I’ve changed my ways and I have been (on and off) regularly exercising the best I can.
I’ve had a personal trainer, took part in lone and group workouts, ran, walked, boxed – you name it, I’ve done it.
Swimming is probably my favourite form of exercise; it helps me to relax, you can do it at different paces to suit your day, it’s a really good form of fitness and a much needed self-care ritual I can stick to. It’s recommended to be excellent for PCOS sufferers as it is low intensity, it aids my body through recovery and it actually increases my sensitivity to insulin.
I also took up Roller Derby in 2015 which is a full contact, high impact form of fitness, so totally the other end of the spectrum, yes, but go with it. I fell in love with it and then out again (due to a nasty leg break), another blog needed for that one.
Roller derby gives me so much more than just fitness; it challenges me, enables me to stay motivated, creates me an amazing support network and ultimately, it is fun – I enjoy doing it, which is essential if I want to stay committed to being the best version of myself. However, high intensity workouts, according to some sources, may make symptoms of PCOS worse, which has been crushing to read. I’ve never really given this much thought or taken time to analyse whether my symptoms do become worse when I skated – I feel like now I’ve got a hold on my symptoms, it’ll be good to see how I fair up once I’m back to full mobility and skating again.
For quite a few years post-diagnosis, fitness was a massive chore but now it inspires me to push myself and to stick to my self-care rituals, which are both things I have found I need to keep me from falling into a ‘slump’.
Fitness is important but so is rest – as my bodies recovery process is longer – it’s vital that I opt to balance out my activities to support my recovery or I’m at risk of burning out more frequently. Listening to my body and letting it do what it needs to do is something I’ve had to accept. It doesn’t mean I have lost or failed if I can’t do as much as others. By resting, I’m choosing to be kind to myself so that I have the strength to continue to train and remain committed.
‘Investing in yourself is the most important investment you’ll ever make in your life’ – Warren Buffet
Balance and commitment are keys to taking control of my PCOS – what are yours?
What resources have been most useful to you, and how did you find them?
Most of my resources and information has been gathered using websites and blogs online, books I’ve bought or from apps I’ve downloaded. I probably use all the resources listed below on a weekly basis at present:
- Bulkpowders.co.uk – used for supplements
- PCOS Living – by Kelly Keating, used for inspiration
- EATRUNLIFT – by Rachel Aust, used for motivation and recipes
- Paleoforwomen – by Stefani, used for relatable content variation
- PCOS Diet Support – used for glossary purposes to educate and help me understand alien concepts relating to PCOS. They also contact me and provide email support, which I used whilst in the early stages of my leg break (another story) for reassurance and guidance
- Insulin Resistance Cookbook by Tara Spence, used to experiment and find new friendly meals
- PCOS Tribe UK Facebook support group, used to form a network and to help explore my body’s need for certain supplement dosages
- PCOS Diva app -used for a daily fact/tip and podcasts
- PCOS diary app -most recent resource, used to track everything about my PCOS life. It has stats, graphs, diary entries for mood, food, symptoms, exercise, supplements, medication and my cycle
What do you wish (if anything) your GP had done differently in your diagnosis process?
As soppy as it sounds I wish I’d be given more attention and made to feel like I was wanted.
From doing my own research I really need to have a good relationship with a doctor to be able to fight this condition. I wish my GP had referred me to an endocrinologist which is a specialist relating to hormone activity in the body. This is currently one of my goals.
I need answers that explore the underlying cause of my condition rather than covering up my symptoms with different medications, hence why I believe natural remedies, diet and lifestyle changes are the way forward.
If you or anyone you know also suffers from PCOS and has been going through similar symptoms, diagnosis or just needs some support we hope this has been of some reassurance and remember to #pledgeteal