PCOS. Polycystic Ovarian Syndrome. It is something personal to me as I have it. It took many years for them to diagnose it and since diagnosis there has been no help. Its cause is unknown. There is no cure for PCOS just ways we can manage the symptoms. The problem is, it is seen as a small problem that only affects you if you try to conceive, or as an excuse I have lost count of the amount of people that have said “that’s nothing, it’s just an excuse for being fat”. People don’t talk about it which is one of the reasons why people don’t know about it. You mention it and people get uncomfortable because they think it’s just a problem with periods or ovaries and the conversation stops.
To make matters worse, doctors don’t often know what it is or how to treat it. They have told me there is nothing they can do until I struggle to get pregnant. Until then, I am told to just work on losing weight as that will “cure” it.
This is a sad situation, as losing weight isn’t as simple as eat less and move more for people with PCOS. We need to know what drives our PCOS, you can’t manage a condition without knowing what drives it. Unfortunately, this is where in my experience things are lacking. Only recently have I started having annual blood tests for my PCOS. At no point was I told what they are testing and at no point have I ever had the results – my doctors surgery has a policy of only giving results if they are outside the normal range – and honestly since lockdown I haven’t had a letter telling me to get a blood test for last year. So if they aren’t even doing my blood tests how am I supposed to see a gynaecologist or a specialist to treat a condition that affects me every single day?
You see that’s one of the problems. PCOS literally effects my everyday life. Yet doctors only treat it if and when someone wants kids. Until then I am told lose weight. Well thanks doc, because I can’t lose weight without some sort of intervention for my PCOS.
You see PCOS isn’t just some cysts on my ovaries, and to make things even more complicated you can have PCOS without having cysts on your ovaries. PCOS is seen as a fertility issue or menstrual issue. It is so much more. It is a complex endocrine condition.
Everyone’s bodies are constantly trying to be in homeostasis. An imbalance in our hormones can cause havoc in our bodies. PCOS causes imbalance in our hormones. PCOS symptoms can include infertility, no periods, heavy and painful periods, thyroid issues, weight gain, excess hair, joint pain, muscle pain, anxiety, depression, cravings, insulin resistance, hair loss, mood swings, acne, inflammation…the list goes on sometimes it’ll be one or two symptoms sometimes it’ll be all of them – and just to be extra complicated, my PCOS symptoms will be different to the next woman’s. Just because your mate Karen has it and has five kids, and no symptoms doesn’t mean I or the next woman will be the same.
So yeah, I would love to lose a little weight to bring my PCOS under some sort of control. BUT the fact that I don’t know what drives my PCOS makes it extremely difficult. Its not an excuse, I am not lazy – it just effects EVERYTHING and I am so frustrated that the people who are supposed to help just don’t, they don’t give advice, they don’t help, they don’t understand. Luckily there are a few people online who are bringing attention to PCOS, helping those who need it, even just knowing that someone else is going through the same thing can be a weight lifted off your shoulders! Unfortunately there are also people spreading false information, or suggesting crazy fad diets to help stop PCOS symptoms. So if you have PCOS and you are struggling, please do your research before embarking on crazy diets – cutting out dairy and gluten may help some but not others. Going on the crazy keto diet may seem like it helps for a small number but is it feasible long term? There are supplements out there that help but again just because it works for some doesn’t mean it’ll work for you – ask your doctor first, do your research first.
If you’ve read all this and you don’t have PCOS and you’re thinking “So, what can I do?” You aren’t a doctor, right? Well, if a woman opens up to you about it, listen. Show us you are there for us, try to understand. Most importantly please do not alienate us, belittle or bully us – because dealing with all the stuff our own bodies are throwing at us is bad enough – we don’t need crap from outside too!
For those of you reading this who have PCOS. Remember this. You are a strong as hell woman and if you ever need help – reach out.
We got this!
(Originally posted on 04/02/2021 on old website)