This isn’t actually the post I’d planned on posting today, but a friend (see her blog here!) brought my attention to the fact that September is PCOS Awareness Month. This post has been in the works for a while, but what better time to post it than a month dedicated to the topic?
What is PCOS?
Polycystic Ovary Syndrome (PCOS) is a reproductive illness affecting up to 1 in 10 biological females. While ovarian cysts are common and can often be removed, PCOS is diagnosed if there are over 12 cysts on each ovary at any given time (or, this is how it was explained to me during my diagnosis). PCOS is often characterised by an increased amount of male hormones, and can also lead to insulin resistance. PCOS symptoms include acne, excess body and facial hair, weight gain/difficulty losing weight and, possibly most importantly, irregular or heavy periods. PCOS can cause fertility problems and depression, and people with the condition are at higher risk of diabetes and heart disease.
My Experience with PCOS
I was diagnosed with PCOS aged 17, almost 5 years ago. When I was diagnosed, my testosterone levels were in the normal range for an adult male – hardly what you want in an already moody teenage girl! Although I’d started my periods 5 years before, I had never experienced a ‘normal’ period – I had been to the GP several times over the years before my diagnosis, however in younger teenagers irregular periods are common and often level out after puberty. I was put on a 3 month course of contraceptives to encourage my hormone levels to fix themselves when I was about 14, but this turned out to be a short term fix. I was going for long periods of time without bleeding, then getting months when it just didn’t stop.
I remember once during my longest period (several months long!) a girl at school was sent home after starting hers for the first time and being unable to manage the pain. In the mean time, I’d been bleeding non-stop for weeks, passing clots the size of satsumas & still had to grin and bear it!
When I was finally diagnosed I was put on Dianette, another contraceptive that they only prescribe in the UK for severe acne and hormone imbalance. I found out a while after that Dianette is actually banned in several European countries, such as France and Turkey (both places I was intending to go to!) because it is a much more dangerous pill than most other kinds. There is a risk of blood clots with all oral contraceptives, but this risk is much larger with Dianette. The risk is also increased if you are a PCOS sufferer – as contraceptives are the most common treatment, we really can’t win!
Personally, I haven’t ever had any problems with contraceptives. I experienced some cramps in my legs and was switched to one of the most common pills (the brands I’ve had are Rigevidon and Microgynon but many other brands use the same dosage) almost two years ago. This controls my acne and periods, and for now I’m perfectly happy taking them although I do want children, and will have to discuss different methods of treatment when I do decide to try and conceive.
As I’ve mentioned, I have terrible skin – although having been on the pill for so long this is largely manageable. My skin is still temperamental, and often facial washes etc that have worked really well before suddenly don’t, but I don’t get anywhere near as much acne as I used to. I also struggle with excess body and facial hair. I’m quite relieved that at the moment I have a one piece swimming costume and no one to impress because I don’t have to shave my stomach! During the summer I often have to shave my legs and underarms daily, and have also shaved my arms before. Let’s not even discuss the bikini line!
As I mentioned before, periods have definitely been a huge struggle. I still get a lot of pain, clotting and heavy bleeding, but the pills have regulated them very well. I get period pain & back ache even when I’m not “on”, but I know that I won’t get my period until the 3 pill weeks are up.
Why I Feel Lucky
While my experience with PCOS hasn’t been easy, I do feel lucky to have been diagnosed when I was and treated quickly. It did take a while to get diagnosed, but this was due to age and I can understand why PCOS wasn’t considered when I started going through puberty; the disease is most commonly diagnosed in the late teens/early 20s.
I feel lucky that my symptoms aren’t as extreme as many peoples’. A lot of the time PCOS is only in the media if a woman has excess facial hair as a result, and chooses not to shave. I don’t have a beard, and don’t need to shave my face. This post describes a horrendous experience, which makes my experience with PCOS seem quite minor, really. I don’t know what my fertility is like and it does worry me. I want children more than anything, and the idea that it could never happen is really scary, but for now I’m on top of the PCOS, I’m happy with my treatment, and babies aren’t something I want to worry about yet!
Why Do We Need PCOS Awareness?
While the symptoms can be controlled, there is no cure for PCOS. It is an illness that can not only be serious in itself but can put sufferers at higher risk of other, more serious conditions. With as many as 10% of adult females affected it just makes sense that there should be more awareness of the condition. While this is a largely invisible illness, it does affect lives in ways that many people aren’t aware of.
See you soon,
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