PCOS… my old nemesis

I was wondering about what to write; to be honest it’s been a very uneventful time. That is no way a complaint. There have been long stretches in my life where being eventful was not such a great thing, so whenever stuff is just ticking over I am overly grateful. The most happening is that when I went out for my run today (first of week 5 and still going, I feel very smugly virtuous) it was extremely wet and windy. The hot shower and cup of tea I had when I got home have been my biggest thrill of late. That will continue until it’s finally payday next week and I can afford to do actual stuff again.

So in the scrabble for a topic I figured maybe I could talk about something which has affected me a lot and share my experience. I know for me it often helps to read other people’s blogs and see I’m not the only one dealing with something! The big one that came to mind was depression but… eh. That topic’s got a little too much power over me. While I’m sure I’ll go for it at some stage I will really need to be in the right frame of mind. It did however put me in mind of something kind of related and I’m more than happy to talk about.

This topic does has a bit of TMI potential, but I’ll try and keep it to a minimum. So, Polycystic Ovary Syndrome… go.

You might think this simply means a woman has lots of cysts on her ovaries. That is entirely understandable, given its name and all, but I’d say the operative word here is syndrome. You can have ovarian cysts with or without having PCOS, which is basically a collection of various related symptoms a woman suffers. They result from the various hormonal effects the cysts have, particularly in relation to insulin production. I am not nearly medically versed enough to explain the mechanics properly, but I’ll link to some sources at the end of this.

These may include any combination of the following:

  • Irregular periods
  • Amenorrhoea (absent periods)
  • Menorrhagia (excessively heavy periods)
  • Acne
  • Insulin resistance
  • Weight gain
  • Hirsuitism (excess body hair)
  • Thinning hair
  • Infertility
  • Breast tenderness
  • Depression
  • Sleep apnea
  • Pelvic pain
  • Skin tags
  • Acanthosis nigricans (skin discolouration usually around armpits, inner thighs, vulva, or under the breasts)

In addition, there are various conditions linked to PCOS including diabetes and hypertension. Likely because of the weight gain.

So that sounds fun, right?!

I will be honest with you and admit that from this bulleted list I’ve had all of those at some point or another, some persistently. The only thing I can’t be sure of is infertility since you can’t test the theory unless and until you start trying to have children. It began almost as soon as I hit puberty; I guess once my hormones woke up they were already out of whack and it’s all gone from there. Symptoms tend to manifest in your teens or early adulthood, I’m told, but given that puberty is exactly the kind of time you expect young girls to have irregular periods or acne or such it can take a while to get diagnosed. I first heard of it from a magazine when I was about 15 or 16 but was in my mid twenties before I finally managed to get a diagnosis. (This is fairly typical of anything gynecological, I find – people are far too ready to dismiss things as being par the course because women’s bits aren’t always well understood).

It. Is. SHIT. Totally, completely and utterly SHIT.

I think the big kicker with it is it attacks you right at the heart of what it means to be female. It gives you hair where only men would normally have it, makes your boobs hurt, messes with your monthly visitor and your ability to conceive, it does various unattractive things to your appearance (though in fairness some of those may say a lot more about societal expectations of female beauty than actual unattractiveness). You frequently feel like your own body is out to sabotage you or is just defective, and it’s a horrid feeling. It really is. It is something that has loomed very large in my life as a result because feeling like the very skin you’re in is working against you is a constant battle.

I won’t go into massive amounts of detail about all those symptoms individually, but if I tackle the ones that I personally have struggled most with:

Weight gain

So you may remember me saying when I started Couch to 5k I wasn’t doing it because I was bothered about size/weight loss. Weight gain appearing on this list and on top of it to boot may seem contradictory, but 1) I have not always been this accepting of my size and 2) being overweight has long term health consequences. It is a physical problem even if you are still body confident.

The reason PCOS causes weight gain is linked to insulin resistance. I probably won’t explain this well but here goes! Insulin is a hormone which gets affected by PCOS. In the usual scheme of things insulin regulates your blood sugar and how glucose is delivered to your cells for energy. When you’re insulin resistant the cells don’t respond to it normally and so don’t take things in properly, which means your blood sugar level gets raised. More and more insulin gets created to less and less effect. Your body then converts all this unused energy to… no prizes for guessing fat. It’s particularly around the lower gut with PCOS, a lovely aesthetic. It’s the high blood sugar which apparently causes the skin discolouration I mention too. The problem is that this is a vicious cycle. Insulin resistance encourages weight gain; weight gain encourages insulin resistance. Weight gain around that lower gut area in particular also tends to release more hormones to further screw with everything, not great for somebody who already has a hormonal problem!  Essentially it’s about the fact that your hormones need to be in balance and when they’re not they tend to have a knock-on effect with each other that exacerbates the problem. Even if you’re not overeating your body is just processing wrongly and storing energy when it shouldn’t.

For many years I was barely able to look at myself in mirrors or photographs without wanting to cry. I felt ugly. We live in a world which views being overweight as not merely a physical state but a moral failing. People treat those who are fat as disgusting. That’s actually their problem but it doesn’t feel like it when you’re the one they’re aiming it at, calling unattractive and a lazy slob. No matter how untrue it is when you hear it so much you come to believe it. All that negativity is very demotivating. It’s more difficult to shop for and nicely dress a larger size; it’s not well catered for despite the fact that people are getting bigger on average. You can often wind up feeling frustrated. I am a young woman, I do not want to dress up in shapeless granny tents for fuck’s sake!

In that context I’m sure you can understand why having a body which is hard wired to hold onto weight (often feels like it’s twice as easy to gain and ten times harder to lose) was difficult to deal with. It is plain aggravating to hear people proclaim that “fatties” are slobs who lack self-control when you know full well that you are not overeating – though even if I was overeating I wouldn’t deserve those comments. Even now that I’ve got older and more accepting of myself (I am big, not ugly, and my worth can’t be measured in inches) it’s still very frustrating from the health perspective. Insulin resistance isn’t a far cry from diabetes and PCOS is linked to that. That’s why I took up running. Aside from overall fitness making your body processes more efficient generally I’m told that for some reason running as a form of cardio particularly seems to help with insulin resistance. Chatting to other sufferers who run seems to bear this out. I don’t know or care why, if it helps my overall health I’m game. I have enough issues and do not fancy adding diabetes to the list!

Menorrhagia

So here’s where we get a little TMI. Menorrhagia is the medical term for having heavy periods. I had this all through my teens. It was only alleviated by going on the contraceptive pill (which in my opinion ought to have happened far earlier but I got given the old “she’s young and it’ll settle down” fallacy). Eventually I had to come off it and have since developed the opposite problem, which is really fucking hysterical for someone with my history! Funnily enough the term ‘hysteria’ derives from the Greek word for uterus as only females were thought to ever suffer with it, bit of rank sexism from back in the day.

The reason it’s so fucking hysterical is that calling my periods “heavy” was somewhat akin to calling the South Pole “a bit chilly.” Clothes and bedsheets aplenty got ruined. I was afraid to leave the house when I had my period. I could get very creative with some description here but I don’t want to gross anyone out too much! Suffice to say it was to such an extent that it was a very visible problem and extremely difficult to manage. God knows how I survived having to go to school through all that. It was constant paranoia trying to make sure nothing happened there because unlike at home I didn’t have the luxury of a change of clothes or being able to use the bathroom every five minutes if I needed to. I’m amazed I didn’t get anemic (or maybe I did and never realised). Even now, when it’s been several years since that problem ceased, I still get very worried going to bed at night when it’s that time of the month.

I doubt I really need to explain why this was such a bitch. I think if I just say that it was… life inhibiting… that about sums it up.

Total tangent alert! I find it really annoying that all period tracker apps seem to be pink and flowery. I know it’s wimmin’s stuff but seriously, design/marketing peeps, you need to realise that being female-related does not automatically equal being stereotypically girly. That time of the month really isn’t very pink and sparkly, ya know.

Acne

Oh boy. Acne. The further you get from your teens the more embarrassing it is to have it (I didn’t even have it as a teen!). At my worst points, I had more of those problems looking in the mirror.

It’s not just pimples, either. Pimples aren’t so bad. They’re not attractive and will make you feel like a spotty teenager, but they have a fairly short life span and will hide reasonably well under careful concealing (thank you, Rimmel). We’re talking properly deep, cystic acne. Which, as an FYI if you’ve never had it, is painful. They are huge red lumps and impossible to cover with make up. It’s like volcanoes sprouting up on your face. They last a lot longer and what’s more they have a lovely tendency to leave dark patches/scarring for some time after.

Thankfully after seeking a lot of skincare advice from various gurus I have managed to come up with a skincare regime that helps. It doesn’t eradicate it – it’s hormonal, you can’t – but it definitely staves off the worst excesses. If anybody’s interested I cleanse using a Clarisonic and use Effaclar K as a serum before a gentle moisturiser, nothing too rich. The trick is to tackle excess oil/congestion in your skin without using anything too harsh or drying, because if you strip too much oil your skin will just react by creating yet more.

So… yeah, that’s my overview of exactly what it means to have it and how/why it can be a struggle. It’s just a series of bits and pieces that add up to make life awkward for you in your body. Unfortunately there is no cure for PCOS. All you can really do is manage the symptoms. There has been some success in using a drug called Metformin to manage insulin resistance (and therefore reduce the hormone imbalances which cause the various symptoms). And wouldn’t you know it? I’m allergic. I was so unimpressed, I can’t tell you. It’s not a drug a lot of people are allergic to and I’m not a very allergy prone person… yet I’m sensitive to the one drug it could be game changing for me to take. Clearly I pissed off a God somewhere!

hades

I don’t want this to come off as a doom and gloom thing that will destroy your life. It’s not. This really isn’t the worst thing that can happen to you, health wise! It’s inconvenient and often embarrassing, it can get you down, but it’s not quality-of-life destroying. Not every woman will suffer all the symptoms or to the same degree. Infertility is the big spectre but not every woman with PCOS has that either (Victoria Beckham has PCOS and 4 kids!). There are various individual things you can do to tackle the separate symptoms. As one example, hormonal contraception can help with acne, hirsuitism and regulating periods. There are various treatments for acne, and permanent hair removal methods. Eating healthily – by which I mean keeping mostly to unprocessed food and watching portion sizes, not total self-denial – helps control blood sugar. On the advice of a book I’ll cite in the list of links below I started adding a few vitamin supplements to my diet. I think they’ve made a difference (and as a great side effect really strengthened my nails).

I picked this as a topic because I think it’s something that affects a lot of women but that there isn’t a lot of understanding about. Hopefully if anybody reads this and thinks “hmm, sounds familiar” they can have a look into it with their doctor, or otherwise they can simply feel that comforting internet solidarity of “well hey, at least I’m not the only one!”

Helpful links:

PCOS Diet Book by Colette Harris & Theresa Cheung

NHS page

Verity (UK charity for PCOS)

Fact sheet from US Department of Health

I kind of hate citing Wikipedia as a source but… eh, I know people will only use it anyway, might as well save you the search lol

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