I have spent a lot of time trying to come up with a snappy title for this post, but try as I might I couldn’t come up with one. This is a sensitive topic for me, which I have been planning to write about for quite some time, ever since I mentioned it in this post last November. I was diagnosed with PCOS about 4 years ago, and it was a lot to come to terms with.
PCOS stands for polycystic ovarian syndrome, and affects an estimated 20% of women in the UK, although approximately half of these experience no symptoms and so are undiagnosed. PCOS is characterised by imbalanced hormones, in particular high levels of androgens (male hormones), irregular or absent periods and the formation of multiple cysts on the surface of the ovaries. Interestingly, to be diagnosed with PCOS, you only need to show 2 of these 3 symptoms, so people can be diagnosed as having PCOS without any cysts having been seen. Other symptoms of PCOS include oily skin, hirsutism (excess body or facial hair), hair loss, acne and weight gain. There is a lot of information on the NHS website.
A little back story for you:
I started my periods when I was about 13; they were always very light, and didn’t really settle into a regular pattern. I had stretches when they appeared around every 6 weeks, but then I would miss some. I was even more disorganised than most other teenagers and didn’t really keep track of them, and I never worried about them being irregular as I’d read that that was typical in the beginning. When I was 15 I met my first serious boyfriend and started taking the contraceptive pill. By 18 or 19 I had switched to the contraceptive injection, which caused a) weight gain and b) my periods to stop. At that age, I felt like that was a good thing – none of the hassle, no PMT and none of the expense of sanitary products (I was a struggling student at the time.) I stopped having the injection at age 22, and I’d been warned that it could take up to a year for my periods to return, so I wasn’t concerned that they were irregular at best, and when I returned to student life at 23 I enjoyed the benefits of quarterly rather than monthly periods. So it wasn’t until I was about 26 or 27 that I really began to get concerned about how few I was having and went to see a doctor.
I had gained more weight through my unhealthy student lifestyle, and even more in the first year of living with my boyfriend, so my doctor’s first response was “you need to lose some weight,” a fact I already knew. I wanted more answers though, I had read a lot about PCOS and I was convinced that that was the problem. My doctor sent me for blood tests, which came back showing a slight imbalance in my hormones but, in my doctor’s words, probably nothing to worry about. After that, she sent me for an ultrasound. This was both embarrassing and uncomfortable because, due to my size, she couldn’t get a clear scan using a normal ultrasound methods so had to use an internal probe. Yes, that is how it sounds. She told me that both my ovaries were polycystic, but that I was fortunate in that I wasn’t experiencing any issues with uterine lining that can happen with absent periods.
So What Next?
If I’d listened to the doctors, nothing. Once I was diagnosed, I wasn’t given any help or support, on the grounds that I wasn’t trying to conceive. According to the first doctor I saw, that was the only way that I would be able to get any help. I wasn’t even offered any support to lose weight, I had to broach that subject myself with the practice nurse. I got the distinct impression that the doctors I saw at my old practice felt that I had brought it on myself and so didn’t want to help me. I had one memorable appointment with a heavily pregnant doctor (not ideal when discussing potential infertility), where I asked questions about the condition and didn’t receive any answers. Because most of my side effects are minimal (I have slightly oily skin, and a little excess body hair [hairy toes, like a hobbit] as well as my weight problem) I didn’t need any help with them, so she repeatedly told me I needed to lose weight, without offering any advice on how. She also advised me to start trying for children immediately “in case there was a problem”, regardless of whether we were in a position to support a child if we had conceived then. Finally, I got up into the table for my smear test, which is never a good experience. The first question she asked was “when was your last period?” which rather gave me the impression she hadn’t taken any interest in the first part of my appointment. I left feeling really disheartened, and resorted to reading all the literature I could find on the subject.
Here’s What I Found:
I found that PCOS can be a cause of weight gain. This is due to insulin resistance, which is commonly found in women with PCOS. This means that insulin levels need to be higher to process sugar in the blood, which leads to higher testosterone levels. This then can prevent ovulation as well as causing many other side effects associated with PCOS. Being overweight can add to the likelihood of insulin resistance, meaning that it can accelerate the symptoms of PCOS, however being overweight in itself is not a cause of the condition. A low GI diet is recommended, including wholegrain pasta and rice, as well as plenty fruit and vegetables. Additionally, sufferers can be prescribed metformin, which is typically used in the treatment of diabetes. It works by increasing the body’s sensitivity to insulin, therefore lowering insulin production and so the related hormonal imbalances. I am now working with a doctor at my new practice and am waiting for a referral to the endocrinology department of my local hospital to try this.
I also found that there is very little information on the subject of PCOS – the causes are unknown, although there may be a genetic factor. More importantly, I found that huge numbers of women are being diagnosed with PCOS and then being essentially abandoned with no other information, and turning to the internet for answers, just as I did.
Some research has shown that there may be other indications of PCOS, such as the development of skin tags (I personally have had a lot of these removed from my armpits) , pelvic pain or discomfort (I find it is similar to period pain), sleep apnoea and depression. These are less well-known than the ones mentioned above, but I think that the link is valid.
It is my personal belief that my doctor should not have prescribed the contraceptive pill for me before my periods had become regular. I think that this masked the main symptom of PCOS, and led to the condition remaining hidden for much longer than it otherwise might have done. Having said that, a lot of the research I have seen is very recent, so the doctor I saw in the late 90s/early 00s would not have had access to a lot of the information I have read.
I am losing weight, slowly but surely, and making the lifestyle changes that are recommended. These are for a healthier lifestyle as a whole, but should make a difference where my PCOS is concerned. I am waiting for my referral to try metformin, and I’ve just found that I’ve had a few months (incidentally the ones where I’ve been most active) where I’ve been having periods semi-regularly. What I haven’t found out, is what would happen to the cysts if and when my hormones rebalance and I start to ovulate. Do they stay? Do they continue to mature and release eggs? Will they be reabsorbed? No one seems to be able to tell me.
I’m also aware that the lifestyle changes may not be enough to overcome PCOS, and I may find it difficult or even impossible to conceive. As someone who has always dreamed of being a mother, that is difficult to come to terms with. I am working on it, slowly, and I know that I will still become a parent, even if it isn’t in the conventional way.