Wednesday, 9 May 2018

Living With PCOS: My Story

Wednesday, 9 May 2018

Educational post incoming!

Hi all, welcome back! Today I'm going to be talking about something that isn't within the usual niche of my blog, something which is more focused on health, specifically women's health. So, if that isn't really your thing, that's totally fine and I'll see you next time! I wanted to talk about this particular condition as not only is it not very well known (considering it affects a massive 1 in 5 women!), but it also happens to be something I've dealt with throughout my life as a teenager and well into adulthood. Like many others, however, I had never heard of the disorder and went by frustratingly trying to understand why I was different in more ways than one to other girls my age.

So, without further ado, let's jump into the very basics.

What is PCOS?

For those of you who are still interested, 'PCOS' ( also known as Polycystic Ovary Syndrome), is a condition that affect's the woman's ovaries and sub-sequentially many other bodily factors. It seems to be a disorder that goes by unknown to most people, and can affect people throughout their lives, without them - or others close to them - even realising it.

Symptoms can include, but are not limited to:

  • irregular periods or no periods at all.
  • difficulty getting pregnant (because of irregular ovulation or failure to ovulate)
  • excessive hair growth (hirsutism) – usually on the face, chest, back or buttocks.
  • weight gain.
  • thinning hair and hair loss from the head.
  • oily skin or acne

The most common symptoms usually involve an irregular menstrual cycle or difficulty in conceiving, and onset usually begins during late adolescence or early twenties. As the name suggests, PCOS is a result of tiny cysts forming on the ovaries, and as a result affects the fertility in women who have the disorder:

During each menstrual cycle, the ovaries release an egg (ovum) into the uterus (womb). This process is called ovulation and usually occurs once a month.
However, women with PCOS often fail to ovulate or ovulate infrequently, which means they have irregular or absent periods and find it difficult to get pregnant.
(NHS Choices)

But it's not just difficulties in conceiving that they have to deal with - PCOS can often pose risk of other health problems developing later in life, including:

  • type 2 diabetes – a lifelong condition that causes a person's blood sugar level to become too high
  • depression and mood swings – because the symptoms of PCOS can affect your confidence and self-esteem
  • high blood pressure and high cholesterol – which can lead to heart disease and stroke
  • sleep apnoea – overweight women may also develop sleep apnoea, a condition that causes interrupted breathing during sleep
  • endometrial cancer - particularly women who have absent/very irregular periods are more at risk
(NHS Choices)

My Experience

For me, I started noticing symptoms when I was around 14 years old. My periods were very irregular, and sometimes lasted for weeks at a time. I also had agonising menstrual pain and cramps to deal with during my period - so bad to the point of where I would almost pass out from the pain and often had to take time off from school. One day, my mum took me to the doctors and I was prescribed Microgynon (the contraceptive pill) to help regulate my periods. This actually worked well for the most part, as I was more in control of when I could start my periods (you stop taking the contraceptive for a week every month to allow your period to resume) and it also did wonders for the pain relief. My cramps were much less severe and I was able to go about my menstrual cycle somewhat peacefully.

However, this particular form of contraceptive did not mix well with my body in other ways, and caused me to gain quite a bit of weight: I was around 8 stone when I started the pill and in just a couple of months I had gained a stone and a half. Of course, this made me feel very insecure - I wasn't overweight, but I felt uncomfortable with how much weight I had put on, and tried all sorts of diets and workout routines to combat this. Unfortunately, the exercise and dietary changes made little to no difference to the number on the scales, and so I eventually made the decision to come off the pill. I didn't consult a doctor first - although you are supposed to! - and it took me a while to even realise that the pill was the root of this weight problem. I think within about a week of not taking Microgynon, I had resumed my previous weight, and that pretty much confirmed for me who the guilty culprit was!

At this point, I was still very much unaware that I had PCOS. For me, I knew that I had irregular and painful periods, but that was pretty much the gist of it. I don't think I had ever even heard of the disorder until I one day decided to enter my symptoms into Google and came across it for myself. It was almost like a lightbulb suddenly went off in my head as I started reading about the condition and relating to pretty much everything in its description.

It was both eye-opening and comforting to know that the constant discomfort and issues I had to deal with weren't unique to me, and that there was help available.

However, without a formal diagnosis, I couldn't know for sure, so I booked myself another appointment to the doctors when I was around 19/20 years old. I remember the initial reason I went is because I was facing another issue - the body hair - and I wanted to see whether this could have been as a result of PCOS. 

I had pretty much struggled with the excessive hair growth since I was 12-13 years of age. I noticed throughout my teens I was much hairier than my female peers - I had very hairy arms, a hairy neck, hairy face/sideburns etc. Even noticeable hair on my lower back and chest. Again, it was something I was very insecure about and sometimes made fun of for, so it was a very frustrating and confusing time for me. I am a natural brunette, but I think the fact that I had darker, thicker hairs on my abdomen than my older sister (who naturally had darker hair than me) made me realise that maybe this wasn't completely normal. 

So, in the hopes of maybe being eligible for some laser hair removal treatment, I spoke to my doctor and to my disappointment this was no longer funded through the NHS. Basically, if I wanted to do something about my hair, I was going to have to fork the money out for it myself. But, he did refer me to my local hospital for some tests for PCOS. I had my blood taken which showed that I did have a somewhat high level of testosterone in my system, and within a few weeks I had my first Ultrasound appointment. I also had to go for an MRI Scan, which was a little scary, and the fasting beforehand wasn't fun!

I was initially told that I likely didn't have PCOS, because 'most women who do tend to be overweight'. While the weight is a usual problem for sufferers of the condition, it wasn't something that was a major concern to me - but I was persistent that I shared many of the other symptoms (primarily irregular periods, excessive body hair, and acne) and managed to at least get tested for it.

Fast-forward to the day of the first Ultrasound scan (which admittedly is something I thought only pregnant people had to go through!), I was brought into a private room and given the option of having the *ahem* 'probe' inserted through the vagina or scanned externally over the belly. Their preferred method was insertion as this provided a more accurate result, and given that I was no longer a virgin, seemed to be the best option.

I was super nervous about this as I had never had any part of myself exposed like that to a doctor or nurse, but it definitely wasn't as bad as I expected. The inital insertion was a little uncomfortable, but the nurse ensured I was relaxed and talked to me throughout the scan. They were able to 'feel around in there' (sorry for tmi) for any cysts and had a screen project what the ultrasound displayed. They told me they had found a few cysts, none of which appeared dangerous, and I wasn't really sure how to process that news. Did that mean I had PCOS or not?

At the end of that appointment, I was told they would be in touch again to discuss the results of the scan and the options available to me. For some reason, (I don't really recall why as this was a few years back), I had to go in for another scan as the initial results had been lost (??), which was mildly annoying to say the least. This time I had a male doctor perform the scan, which was definitely more awkward for me, and he was a little more rough this time so procedure hurt slightly, especially when they were moving the probe around inside me. Just like last time, cysts were found again and I was told to make another appointment in advance to discuss the results.

So, that day finally came, and again I wasn't really sure what to expect. After waiting a good while to be seen, I had two women (who I don't think were actual doctors, just nurses or something) greet me and tell me that the doctor I had seen that day wasn't available. They basically tried to explain to me what the results showed, and confirmed that I did have cysts and poly-cystic ovary syndrome - which tbh, I could have already guessed! They then went on to say how it now comes down to me and what I want to do about it. PCOS itself isn't curable, but symptoms can be managed and treated. They asked me if I was currently trying to conceive, and I was definitely a bit taken back by that given my age at the time. I assured them that wasn't a current concern for me as I had no plans to have kids any time soon. If I had been trying to get pregnant, they said they may have been able to prescribe me something to help that process - I think one popular option is 'metformin', but obviously that wasn't required of me, and they pretty much just sent me on my way. I think it was then that I actually realised there were fertility issues involved with PCOS - I must have skimmed over that when I initially read about the condition, but I definitely didn't realise it was quite that difficult for some women with the syndrome to become pregnant.

Obviously this isn't a problem for me right now, but it's certainly something that might concern me in the future. I do see myself having kids at some point in my life, and what's scarier is that not only do women with PCOS struggle to get pregnant in the first place, they also tend to have a higher rate of problems during pregnancy, including miscarriage. I can't even imagine how it would feel to go through something like that!

As of right now, the only issues I really experience with PCOS are the painful periods made bearable through Ibuprofen and hot water bottles, annoying bouts of acne every so often, and facial hair that likes to congregate on my chin and neck every couple of days - no matter how much I pluck! But tons of women are going through much more and much worse everyday, which is why it's so important for there to be more awareness raised of the condition. 

The Silver Lining?

Fortunately, there are charities and organisations out there to help raise awareness of PCOS in the media and society, and with the help of donations, assist the funding of research into the illness, help raise knowledge amongst healthcare professionals, and campaign for better treatment.

If you or someone close to you shares many of the symptoms of pcos as myself or other symptoms typical of the condition itself, check out these charities for further information and support and book a consultation with your doctor for a formal diagnosis and advice. The sooner pcos is diagnosed the sooner you can receive the care you need - and remember, you're not alone!

Feel free to ask me any questions or concerns you might have and I'll get back to you as soon as I can.

Emily x

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