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.
And Now?
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.
June 3, 2014 at 4:56 pm
Wow, Helen, this must have been a difficult post to write. Thank you for sharing this. My 16 year old niece has PCOS, and is also obese. I know that one is not an automatic trigger for the other, but my hope is that if she can get her weight under control, then the PCOS may lessen in severity or be cured entirely.
I wish you health and peace as you continue on this journey, Helen. You are making amazing choices – and your good health will be a major byproduct of the hard work you’re putting in.
June 3, 2014 at 7:43 pm
Thanks Nancy, this post has taken me about 2 or 3 weeks to write, I had to keep coming back to it. From how I’ve felt recently, I think that even trying to be more healthy, even though the weight isn’t coming off that quickly, seems to make a huge difference.
Your niece is fortunate to have been diagnosed so early – from what I’ve read, most people don’t actually find out until they start trying for children (which I’m assuming isn’t the case) so hopefully that will be a help to her in overcoming it. You have my email address if there’s anything I can do to help with advice etc, I’d be happy to hear from either of you
June 3, 2014 at 7:51 pm
Thank you so much Helen. xoxo
June 3, 2014 at 7:54 pm
No problem 🙂
June 3, 2014 at 5:51 pm
I heartily agree with Nancy! Thank you for writing this! It is important that we know about these things as it is often so hard to get a diagnosis!
I have 3 friends with this and I still know very little about it (much more now).
Well done for persevering and taking charge of your own health!
Xxx
June 3, 2014 at 7:46 pm
It is surprisingly widespread, that’s why I find it so odd that so little research has been done into it – the doctors seem to have very few answers! You know where I am if you want to know anything else, I don’t guarantee an answer but I’ll always try! 🙂
June 3, 2014 at 7:49 pm
Thank you 😀
I am stopping being surprised when doctors know less than I think they should, maybe it is because they have to know about so many different things (giving them the benefit of the doubt…)
June 3, 2014 at 7:53 pm
No problem 🙂
Hmm there is that, but with more common things I expect them to know a little (no pressure!)
June 3, 2014 at 8:02 pm
You are right… Have to tell them about restless legs!
June 3, 2014 at 8:05 pm
Arrgghh restless legs, bah!
June 3, 2014 at 8:06 pm
Yes! Exactly!
June 26, 2014 at 10:03 am
I suffered from PCOS as well. Used to get periods maybe 3 times a year. I ended up with an over active thryoid and lost 30kgs and managed to conceive my daughter. 3 years later and some metformin, we managed to conceive my son. I then conceived a 3rd time but sadly lost that pregnancy last October. Since I started living healthier a year ago and after the miscarriage, I have gotten my periods now every single month. My cycles are still a bit long…more 30-32 days than 28 days, but you know that is fine vs never getting your cycle.
So the path you are on is definitely one that can bring healing to your body:)
My cysts disappeared. Not sure if that answers your question. We did pick up one big cyst after my miscarriage that pains around ovulation time, but that is a new one and we will keep an eye on it.
June 26, 2014 at 12:34 pm
Thank you, it’s always interesting to read other people’s experiences and especially for helping me to see that I’m on the right track to healing! I’m sorry to hear about your miscarriage. Great news that you’re so much healthier than a year ago – and thank you for telling me that your cysts disappeared – that partially answers my question (and that was the most important part!)
June 26, 2014 at 12:37 pm
Yes I think it’s so easy to zone in on the negative pcos stories and for them to demoralise you…well that was me when I was using it as an excuse for being overweight.
I hope yours will be a similar experience;)
June 26, 2014 at 12:44 pm
It really is – there are a lot of horror stories out there, so it’s very inspiring to read a positive account 🙂