This is much more of a personal post that I am used to, although I am aware that it may help women to read about people going through similar experiences as them. That’s why I wanted to share my story, and talk about my life living with Polycystic Ovarian Syndrome (or PCOS). Hopefully it might either inspire someone to get tested, or at least ensure people aren’t feeling alone! So, go make yourself a cup of tea because this is a loooooong one. Here’s my history with PCOS.
What Is PCOS?
Ok, so PCOS is defined as “ a common condition that affects how a woman’s ovaries work.
The three main features of PCOS are:
- irregular periods – which means your ovaries don’t regularly release eggs (ovulation)
- excess androgen – high levels of “male hormones” in your body, which may cause physical signs such as excess facial or body hair (see signs and symptoms below)
- polycystic ovaries – your ovaries become enlarged and contain many fluid-filled sacs (follicles) which surround the eggs (it’s important to note that, despite the name, if you have PCOS you don’t actually have cysts)
- Polycystic ovaries contain a large number of harmless follicles that are up to 8mm (approximately 0.3in) in size. The follicles are under-developed sacs in which eggs develop. In PCOS, these sacs are often unable to release an egg, which means that ovulation doesn’t take place.”
Being diagnosed with PCOS for me wasn’t as straight forward as me going to the doctors and being referred. It actually took just over five years for me to be fully diagnosed with PCOS because I also had ovarian cysts. These are totally different.
Polycystic ovaries contain a large number of harmless follicles that are up to 8mm (approximately 0.3in) in size. The follicles are under-developed sacs in which eggs develop. In PCOS, these sacs are often unable to release an egg, which means that ovulation doesn’t take place.
I first knew something was wrong when I started getting agonising pain in my side, and when my usually regular periods become super irregular. Rather than the usual missing periods, I was the complete opposite, and knew something wasn’t quite right. I first went to the doctors when I was 20 and was referred and discharged from doctor to hospital until I was 25. Because of the larger cysts, and because my periods were still present- completely and utterly erratic and unpredictable, but present- a doctor specifically told me it couldn’t be PCOS. He couldn’t tell me what it was, but he was adamant that it wasn’t PCOS.
In the first year of me being referred to the doctors, they diagnosed me with just having cysts on my ovaries, and that there was no treatment, we just had to wait and see whether the cysts went aware on their own. Apparently, it’s super common for women to have cysts on their ovaries and some don’t even realise because the go away just as quickly as they come. My cysts were quite large, and probably distracted people away from the tiny cysts covering my ovaries. They were painful and uncomfortable and I know I still have the larger cysts, especially on my left ovary, as I can feel it from time to time. A small painful little brute that rubs against my insides when I am full, when I need a wee, or when I have the monthly bloats.
The first person to actual ‘diagnose’ me, or to the best of what he knew, was a sonographer who was taking internal scans. He half laughed when I told him that two doctors had told me I didn’t have it because of the ‘lack of lack of periods’. He pointed out all of the tiny sacs attached to my ovaries, and said it was pretty clear that I had it, irregular symptoms aside. From there, I pushed and pushed to make sure I saw someone that would listen to me.
I explained to the doctors that not only was I suffering from unpredictable periods but that I had excess facial hair that was sprouting everywhere, my skin would often break out with painful lumps that weren’t quite spots (cystic acne I know now) and just a general feeling of being out of sorts. I was also gaining weight at a rapid rate, something I’d fought quite hard all my life to steer clear of.
So the skin and the hair isn’t the nicest, but it’s all superficial. What isn’t superficial is the very real potential of me being infertile, or it being much harder to conceive. I was never really a maternal person in my twenties, and I would keep reminding myself of that so I would never think about the fact that, maternal or not, children may not be in my future. Fast forward almost a decade and I am starting to soften. Friends have had children that call me Auntie Sarah. I became better at holding newborns. I wasn’t as terrified as I had in fact been when I was younger. The ice queen had melted, but she may be ruling her kingdom completely alone, and without an heir.
Until I start trying for a baby, I won’t really know if I can conceive or not. What I do know though, is aside from the physical effects of PCOS, the mental ones are exhausting. A recent study conducted by researchers at Cardiff University’s Neuroscience and Mental Health Research Institute has revealed another potential side effect of PCOS: an increased likelihood of developing mental health issues. The scientists found that PCOS patients were more likely to be diagnosed with mental health disorders including depression, anxiety, bipolar disorder and eating disorders. A few months ago, I was diagnosed with extreme PMS. For the past few years, I would swing between being happy and bubbly, to being angry and irritated. There was no real in between and it was an issue. It made me think differently, towards people at work, towards my friends, towards my partner. I ended up feeling so low at times that I would cancel plans, even if it meant me losing out on deposits or money etc.
There’s no cure for PCOS, but the symptoms can be treated. As always they say that losing weight and eating a healthy, balanced diet can make some symptoms better. I have also read many many studies on the benefits of not eating dairy if you have PCOS, and even cutting out red meat. I’ve even read that organic is the way to go. This could be linked to the way that the food processing and farming methods are. A lot of these processes include pumping animals with hormones. As people with PCOS have irregular hormones already, and more isn’t a great idea. I often go through cycles of cutting down, and cutting out dairy, and it makes me feel so much more energised. It is something I am looking into doing full time. I also try and steer clear of leaving my plastic bottles in the sun- in fact anyone should avoid this, and I don’t put plastic in microwaves. Again, there is some belief in the chemicals in plastics interfering with hormones when they are heated up.
Supplements for PCOS are also widely accepted in the groups I am a member of on Facebook to manage symptoms. From ensuring you get quality vitamins and minerals in your system to counteract the feeling of being exhausted or blue with PCOS, the vitamins that are said to help with conceiving, supplements are a big part of trying to treat PCOS. There are a multitude of options at Natures Best that can help combat a lot of the symptoms that PCOS brings about. I truly believe that a lot more holistic and natural ways to help your body are needed in this world filled with chemicals, pesticides, synthetic hormones, and more.
Medications are available to treat excessive hair growth and bad skin. I am lucky that my skin breakouts aren’t consistent so I haven’t had to take them. When I have a bad flare-up, I tend to take a look at what I am eating, and what I am putting on (or not taking off!) my skin. A great skincare routine helps a little, although cystic acne is generally hormonally charged so there’s nothing you can do that can totally erase it. In regards to the hair, I’m quite fair, and it’s usually blonde hairs around my mouth and chin. I tend to just pluck them out on the regular but I am looking into how laser would help me moving forward. It would be more expensive, but it would be worth it in the long run.
The exact cause of PCOS is unknown, but it often runs in families. It’s related to abnormal hormone levels in the body, including high levels of insulin.
Insulin is a hormone that controls sugar levels in the body. Many women with PCOS are resistant to the action of insulin in their body and produce higher levels of insulin to overcome this. This contributes to the increased production and activity of hormones such as testosterone. Being overweight or obese also increases the amount of insulin your body produces. I think this is one of the biggest things that people panic about. It is also the biggest thing that affects my life day to day.
My weight gain and loss history has higher peaks than Everest. I was most successful in losing weight when sticking to rigid VLCD programmes, but it isn’t sustainable for my lifestyle. I am also guilty of overeating, particularly when coping with something in my life. It begins a little circle I suppose. I am happy to be plus size. I have never been interested in being a size 10, and feel most comfortable at a size 16/18. Before I was diagnosed with PCOS, this was, I feel, my natural body size. I was still active, I was going out with my friends, and I loved shopping.
At the moment though, I am further from that than ever. I feel down and unattractive when I get to my uncomfortable weight stage, and so I eat. Not only does the food make me put on more weight, but it makes me feel sluggish and powerless. This, in turn, will not help my PCOS, and I am concerned for myself in the future should I want children. I don’t want my pregnancy to be dangerous because of my weight. One of my next steps in dealing with this is having CBT therapy. There are also changes I desperately want to make in my eating habits and my exercise regime that I hope in time will help with my PCOS.
*In collaboration with Nature’s Best