Tuesday, 14 March 2017

The Most Annoying Things About PCOS

Marble notebook, white photo frame and packet of Metformin on white, wooden background

I'll be honest with you, this is a difficult post to write.

I've made no secrets about being diagnosed with Polycystic Ovarian Syndrome, but I've always kept fairly quiet about my symptoms and the way it affects me on a daily basis. 

Polycystic Ovarian Syndrome is an endocrine disorder that is thought to affect around 20% of women between 18-44, and is one of the leading causes of infertility in this age range.

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The first time I thought I might have had PCOS was when I was 19. I was sat in a friend's apartment, having a few drinks when I confided in her about my concerns with some excess hair. She said that she knew someone else that had the same issue, and that I should see a doctor about maybe having PCOS. I thought nothing of it, and carried on for years, burying my head in the sand. Not long after my Granddad died, I figured enough was enough and I finally saw a GP. As I went through the process of diagnosis, it was almost like pieces of a puzzle started fitting together. 

It's taken just over a year to get my head around it and find my feet with a change in lifestyle, so I thought I'd share with you some of the most annoying things about PCOS, based on my experiences.

The Diagnosis
When I first went to the GP and told her that I thought I had PCOS, she practically laughed at me. She told me that a lot of the symptoms that I was describing could be put down to me being overweight. I told her that I didn't come to her to be told that this was all down to me being fat. I told her that I had tried to lose weight by myself for several years and that I also suspected I had an eating disorder. After she started to take me a bit more seriously, she referred me for blood tests and an ultrasound. The blood tests came back with abnormal hormonal levels (I'll be honest, this was a long time ago so I can't remember exactly what they said), and the ultrasound didn't find PCOS but found the large cyst that I've spent the last year dealing with. My GP sent me for an MRI, which found a total of fifteen small cysts on my ovaries, as well as the problematic one. 

From what I understand, this is not an uncommon experience. Women are fobbed off, told to lose weight and told that there's nothing they can do. I can't argue that losing weight won't help control the symptoms, but that's almost impossible at times. Doctors generally don't seem to have a firm understanding of PCOS, which can be incredibly frustrating. My advice to you would be, if you think you have PCOS, do all the research you can and arm yourself with information before you speak to your GP. 

Irregular Periods
By far, these are the worst. I can go weeks, if not months, without a period, and the second I think it's safe to go anywhere without my menstrual cup BAM! Blood everywhere. A lot of the time, I'm in fear of suddenly starting my period, and standing up from my work chair and there being a giant red patch. Sometimes when the proverbial floodgates open, they can't take the hint to fucking close. My longest period was literally 36 days. Yeah, you read that right. Thirty-six. By around day 20, I was just so exhausted and emotional that I barely wanted to leave the house. During this time, I had never been more thankful for old school, mattress thick, sanitary pads. Until I got my menstrual cup, I'd just slap one of these on at home and go about my business sluggishly.

The Hair
Jesus Christ, the hair. Even if my broken ovaries get their shit together to give me some kind of regular menstrual cycle, there's the hair. Hair literally everywhere you don't want it. I'm talking shoulders, face, neck, chest, stomach, back; You name it, it's probably covered in fucking hair. I don't want to speak for all women with PCOS, but this really gets me down a lot. I can't afford laser hair removal, so I'm left with trying literally every hair removal option under the sun. For a long time, I was incredibly ashamed of it, and even most days now if you asked me about it, I'd flat out deny it. With the hair, comes the comments. I've had people comment on the five o'clock shadow I sometimes get and think that it's okay as long as it's a joke. Well, it fucking isn't. If you have a friend with PCOS, and they bring this up and want to talk about it, great. Laugh and joke all you want. I go through phases of being incredibly self-conscious of this, so my best recommendation is to just not bring it up at all. If you wouldn't be happy with someone joking about one of your insecurities, don't comment on one of theirs.

The Lack of Hair
On the other end of the spectrum, I can't get my fucking hair to stay in my head. When I was younger, my hair was so stupidly thick that my Mum could barely drag a brush through it. Now I'm lucky if I can get it in a ponytail that isn't flaunting a bald spot. My hair has become ridiculously thin, and I'm still searching for the perfect product to restore it to at least some of its former glory. If you're reading this, and you can think of something, hit me up.

Both thinning hair and excess hair literally everywhere else is the result of heightened levels of testosterone and male androgens. Male androgens are found naturally in women, but PCOS can cause your body to produce far too many, and cause acne, oily skin and of course thinning/excess hair. This isn't necessarily true for everyone. If your hair follicles are particularly sensitive to androgens, this is when the 'problems' start to arise. 

If you have PCOS and you're reading this, don't let this start alarm bells in your head. As a 25-year-old woman with a long-term partner, my thoughts have somewhat naturally drifted to starting a family sometime soon. That's not to say that you might be a 17-year-old girl with no intention of starting a family anytime soon or a 40-year-old woman that has no intention of ever having children. For me, until I was diagnosed with PCOS, I had literally no idea if I ever wanted to have children. When I was first diagnosed and had spoken to my GP, the first thing she mentioned was potential infertility. It felt like a kick in the chest. I wanted to scream at her: What do you mean I might never have children?! I'd never seriously thought about it, but it felt like the option of having kids had suddenly been ripped out of my hands. It was only then that I realised that actually, I do want children, and I do want to start a family, probably now sooner rather than later. After some research and another tear-filled appointment with a consultant at the Liverpool Women's Hospital, I found that children were still on the cards, but I was left under no illusion that it'll be far more difficult than a drunken roll in the hay. The risks are a lot higher, and it would take a lot of work to start a family, but it's still an option.

Weight Gain
My Uncle used to call it 'The Brett Curse'. By that I mean, if I looked at a piece of cake, I'd gain 3lb. I was by no means a skinny kid, but when I turned 19, I started the process of gaining almost 6 stone over the next 6 years. My non-existent metabolism, coupled with my laziness and Binge Eating Disorder saw me become almost unrecognisable to family and friends. Now, after diagnosis and several difficult years of battling my poor body image, I'm finally at peace with my physical appearance and focusing on my health, both physical and mental. A lot of companies (Juice Plus is notorious for this) will try to cash in on people's insecurities and desperation and claim that taking their products will cure your PCOS, and catapult you toward the body you've always wanted, but this is definitely not the way to go. Don't take my word as gospel, because I'm still finding the balance, but healthy eating is going to benefit you more. Educate yourself on what you're eating. Learn how to cook, learn the benefits of everything you eat. There is another way to control your weight, which leads me to...

Holy fuck, Metformin. Let me explain. Metformin is commonly prescribed as a treatment for Type 2 Diabetes but is also often used to help combat some of the symptoms of PCOS. I have insulin resistance, and the Metformin helps greatly with this. Insulin resistance is where cells in your body don't respond properly to insulin so the glucose cannot be easily absorbed, causing an excess of glucose in your blood stream. When your body becomes resistant, it then produces more insulin to try and cope, and you often end up producing far more insulin than a typically healthy person would. When I was in college, I went for tests on a dark patch of skin on my neck, which I now know to be Acanthosis Nigricans, linked to insulin resistance.

When my Consultant first prescribed Metformin, he did say that it would cause some gastrointestinal upsets, to which I told him "I'm sure I can handle it, I've probably dealt with less". When he said "Yeah, well your life has to be worth living" should've probably startled me, but I just thought he was being dramatic. I took my first one at work that evening, and thus began several weeks of clinging to the toilet for dear life. The nausea, cramps and diarrhoea were unbearable. I went back to the GP when it didn't improve after two months and they put me on the extended release, and I haven't looked back. Without changing my diet, it helped me lose just over a stone and balanced out my energy levels. It's been a long, long time since I've needed a nap after getting home from work!

I could have all day, and still not have enough time to talk about everything that's been linked to PCOS. Anxiety, mood swings, heart disease, high blood pressure, I could honestly go on and on. If you think you have PCOS, or you have PCOS and are struggling to come to terms with the symptoms or diagnosis, know that you are not alone. There is so much support and knowledge out there, you just have to look for it.

If you liked this, you'll love 8 Things Not to Say to Someone with PCOS.


  1. This is beautifully written and you managed to make something painful funny at times too.

  2. So informative and a brave post to write Sam. Xx

  3. This is a really brave and honest post, thank you so much for sharing it and opening my eyes to something I've never really understood. Sending you lots of love!

    Oh and if you were serious about the hair thing, have you tried New shampoo bar from Lush? It's meant to be really good for stimulating circulation in the scalp and therefore promoting hair growth. Worth a shot!

    Beth x

  4. I have PCOS too. I was diagnosed a few years ago and never went back to sort it out until I moved back to Liverpool recently. Really stupid, I know. I'm actually crapping myself that I might have let it develop in to something worse. I'm getting blood test results this week so fingers crossed it's all good.

    The worst symptoms for me is the lady beard, the anxiety and the fact that my left ovary feels gigantic. Oh and the hair loss is so depressing. Like you, I had a thick head of hair once.

    I didn't want to take metformin but if it can help raise my energy levels too I might check it out!

  5. A really well written post!! My sister has PCOS, it's been really hard for her but I know she got loads of support from online groups, it's not for everyone but it worked for her xx

    Golly Miss Holly