Firstly I should say not everyone who has the same condition will have the same symptoms. I have therefore decided to write the symptoms according to the NHS website, then talk about my symptoms and what they mean for me.
The NHS states the symptoms of PCOS (Polycystic Ovary Syndrome) are as follows:
- Irregular periods or no periods at all.
- Difficulty getting pregnant as a result of irregular ovulation or failure to ovulate.
- Excessive hair growth (hirsutism) – usually on the face, chest, back or buttocks.
- Weight gain.
- Thinning hair or hair loss from the head.
- Oily skin or acne.
For me the symptoms I have are absent periods, excess hair, weight problems, greasy hair and skin problems. I have attached a link to the NHS website at the end of this blog and the charity many doctors recommend called Verity.
I started having irregular periods at fifteen, but they would only be a few days late or early, so to the doctors it didn’t seem that bad. But in 2014 my periods started stopping, starting, stopping. I found I was having a period, missing a period, having a period and so on. July 2015 was the last natural period I had (until a random one around a year later). By the time I saw the gynaecologist in December 2015 I knew something was wrong. Periods don’t just stop by themselves and I knew I wasn’t pregnant.
My periods are hell at the best of times. I spend three to five days in bed (the majority of those days unable to move). I have to take strong prescribed painkillers and I also suffer with heavy periods. So now having absent periods is the cherry on the top.
Most women would love to have a break from their periods without being pregnant, but it’s not so fun when you know that absence could create problems with your fertility. It’s not fun knowing if you don’t induce your periods with a synthetic progesterone pill then the risk of getting endometrial cancer is higher. See absent periods mean that your endometrial lining isn’t being released in a healthy way, it’s building up in your uterus doing nothing, and that isn’t good for fertility or other conditions.
Excess hair doesn’t sound that bad. Most people imagine excess hair to mean that little bit of hair all women get on the top of their lip, or a couple of stray long hairs on their cheek. Which admittedly isn’t so bad. Grab a pair of tweezers and Bob’s your uncle. However excess hair actually means a lot of hair and not in the usual places women get hair (i.e. male pattern of hair growth).
I should start by saying there are two types of excess hair growth (links below, which will hopefully explain better than I can). One is hypertrichosis and the other is hirsutism. The first is believed to be due to genetic syndromes or drug reactions, and the hair grows anywhere at a faster rate of a person the same age, but is not gender specific. The second is caused by excess androgens, and is usually found in women who typically gain excess hair in places associated with males – beards, chest etc. PCOS unfortunately creates a hormonal imbalance, therefore excess androgens and so therefore we ‘cysters’ have hirsutism. Both mean excessive hair growth but there is a biological difference.
For me my excess hair effects my face, my chest and my abdomen. My chest and abdomen upset me if I’m undressed or showering. I see the hair and it makes me feel like a man – it makes me feel unnatural and unattractive. The only upside with my chest and abdomen is for the most part I can cover it up with tops, tights, skirts, trousers, clothes in general. My face however is not so easy.
I am blonde, so growing up most of the time my hair has been fair (except my chest and abdomen which is dark – like a man). My face fell into that category – fair. Courtesy of the school bully who started picking on my beard, I started shaving some of my beard. As a result it grows back darker and thicker. Now I have to shave everyday (unless I’m sick, or don’t intend on leaving the house and seeing no one but my family).
It’s heartbreaking looking in the mirror as you put shaving foam on like a man. It makes you feel masculine, it makes you feel unattractive, it makes you feel like a worthless, ugly piece of poop if we are being honest. Nine months on and there are mornings I still look in the mirror and cry. I hate I can’t go anywhere without worrying and being self conscious.
As the majority of women with PCOS know being larger or gaining weight is a main factor of PCOS. I again am no exception to the rule. I have always been a larger person. Many doctors said ‘as she grows up the height will even out the weight’, in other words it was ‘puppy fat’. Obviously this never happened and as I grew into my teens I gained more weight. I had and still have an exceptionally hard time losing weight.
Throughout my teens I tried pretty much every diet (except the Atkins diet) to lose weight. I would drink Slim Fast for lunch (which worried our dinner ladies), I would bring salads or plain pasta to school. I ate a lot healthier than some friends who remained thin, yet I remained fat or gained weight. Bullies of course pick on everyone’s weakness which didn’t help. But we didn’t know then what we do now.
I had doctors telling me ‘you need to lose weight’ but switched off to me explaining how hard I was trying. I was active; I walked everywhere, I went roller skating once a week, I even considered joining the netball team. But nothing. In the last few years I gained weight for no reason, there were moments that I wasn’t eating healthy so I put it down to that at first. As soon as I stopped that and started eating healthier, I still carried on gaining. At this time other symptoms got worse, which makes sense now but didn’t then.
Following the diagnosis I was given a PCOS diet sheet and that did help for a while, but the drugs the doctors prescribed made me gain the weight I lost, so I came off the meds but lost motivation. It’s something I am now looking to get back into and finding ways to motivate myself with the diet sheet.
We all know that losing weight helps with everything and this includes PCOS. Unfortunately for those of us with PCOS it can be extremely hard, and the lack of understanding from society and medics can be beyond frustrating. I found that the diagnosis has helped me to switch off more from society’s body shaming opinions, and have found doctors much more understanding and helpful. So it really is a case of perseverance.
Greasy hair and skin:
Another problem that comes with PCOS (or at least in my case and especially when my hormones are ‘playing up’) is greasy hair and skin. I again have suffered with greasy hair since my periods started being problematic (hello ignored warning signs). As a teenager I went through phases of having to wash my hair everyday, which as everyone knows makes greasy hair worse. This continued on and off until about a year ago.
Last year as a last resort I finally found a hair shampoo – I Love Juicy from LUSH. I’ve found this product beyond brilliant. However as amazing as LUSH is and as much as I am addicted to their products, a change in hormones can and does mean their products don’t always work well, and managing psoriasis alongside this is always fun. When my hormones fluctuate my hair will get greasy quicker, my skin flares up with really dry and really greasy at the same time (combination skin). I have products that help my skin and hair now a bit more, but for me my hair, skin and excess hair getting worse is usually the first indicator I have of my hormones fluctuating.
I can’t recommend products as everyone is different but for me I Love Juicy from LUSH works the best on my hair. For dry and greasy skin (combination) I use Catastrophe face mask from LUSH – it calms the skin greatly. As for moisturisers the best face moisturiser I’ve found was Vanishing Cream (also from LUSH) and for spots Grease Lightning (again from LUSH). I know I sound like a walking advertisement for LUSH and I know their products are costly, but these have been what I have found to work best for me. Really though it’s trial and error on what works for you and your symptoms.
Everyone will have different symptoms to varying degrees, but for me this is what I have and how I feel. PCOS isn’t always pretty, but sometimes it’s the little things (like hair shampoo in my case) that can help. As mentioned I have attached links that may be helpful below.
Hirsutism vs hypertrichosis: http://www.hairscientists.org/hair-loss-conditions/hypertrichosis-hirsutism
Hirsutism vs hypertrichosis a video from This Morning: https://www.youtube.com/watch?v=wG7vJAKGtD4