How I deal with PCOS

This post has been sat in my drafts for a good few months as I've never known to approach it.
Please forgive how long this is going to get. I'm gonna try and give as much info about this that I have retained, and explain my experiences as much as possible. Also, please remember I'm not a doctor and in no way medically trained so always seek medical help if you're worried.

I've decided to split this post up so it's easier to digest, and so you can skip to the topics you actually want to read about.

What is PCOS?

I have 'Polycystic Ovarian Syndrome' (PCOS) which is also known as 'Hyperandrogenic Anovulation' (HA)
The long and short of it, is that it's a hormonal imbalance found in women. 

What are the symptoms?

  • Very irregular, heavy, or no periods at all 
  • Excess body and facial hair
  • Acne 
  • Weight gain
  • Severe period pains (pelvic pains)
  • Skin discolouration (patches of thick, dark skin)
  • Trouble getting pregnant 
Other complications are:

  • Type 2 diabetes
  • Obesity 
  • Heart disease
  • Mood disorders 
  • Endometrial cancer 
  • Obstructive sleep apnea

I am lucky enough to suffer from only the underlined symptoms above. (The pregnancy one is unknown and won't be known for a reaaaaaally long time I hope)

Why do women have PCOS?

There is no real way of knowing why women suffer with PCOS. It could be genetic and it could be environmental; there's no way of finding out the source...incredibly frustrating, I know!

How does PCOS affect my body?

Confirmation of PCOS is usually determined by 3 things:
- no ovulation
- high androgen* (a male hormone, such as testosterone) levels
- cysts on your ovaries

It's common to have all 3, a couple, or just 1. I personally have high androgen levels and cysts on my ovaries. *Remember, all women have testosterone, but PCOS sufferers have a higher amount than average.

How did I determine I had PCOS?

I come from an Indian family where thick, dark, course hair is very common, so the fact I inherited it was no surprise. There was cause for concern when I 'entered womanhood' at the age of 11 and was having really irregular periods. Sometimes I would come on twice a month, 3 days at a time; sometimes it would be once a month but extremely heavy and uncomfortable; and sometimes not at all.
Team that with the horrific acne that came my way and it's safe to say I was not enjoying the fruits of womanhood. I also had really thick hair. I was having to wax my legs at the age of 11 due to having hair on my legs so thick that it rivalled a man's. It wasn't just on my legs, it covered my arms, underarms, eyebrows, sideburns, chin and stomach. I can't even BEGIN to list all the names that I was called at school due to a mixture of my Indian heritage and PCOS.
So you can imagine 11 year old Ram: hit puberty earlier than all her peers, irregular periods, severe acne and body/ facial hair that was on par with any male in her family.
It just didn't sit right with me. 
So naturally I moaned to my mum. My mum who was lucky enough to be quite fair with thin body/ facial hair and lovely skin and normal periods. I complained to the point of painful tears because I was so sick of being constantly ridiculed for stuff that was happening to me that I felt could be prevented.

Cue the doctors
Eventually, at the age of around 14, my mum booked me in at the doctors. 

The 1st appointment:
My first appointment was a consultation with my family doctor. To be honest, he was awful. A typical male (NOT ALL MEN) who just told me it's normal and gave me some antibiotics (???) to help with the acne. I left feeling annoyed and unsatisfied with his response.

The 2nd appointment:
A couple of weeks later I was booked in again. This time, my mum basically demanded to see a dermatologist. Not only for the acne, but for the facial hair too.

The 3rd appointment (dermatologist):
As soon as the dermatologist saw me she was pretty sure I had PCOS. She said she would need to run some tests to be sure. Being the scared, vulnerable and shy 14 year old I was (can you believe I was ever that painfully shy?!) I was basically going to do everything I was told. The dermatologist was my beacon of hope. She encouraged me that PCOS was very common and wasn't the greatest thing to deal with but it was doable and that thousands of women did it on the daily. She told me that I would deal with a lot of problems in my life because of it; but that it would make me stronger as a person (spoiler alert: she was right)

The 4th appointment (dermatologist):
I returned to see the dermatologist where I had my blood pressure, height, weight and blood taken. The main purpose of the blood being taken was to test my androgen levels. She also booked me in for an ultra sound of my ovaries so they could see if I had any cysts on them.

The 5th appointment (ultrasound):
Looking back on this experience I can't help but laugh.
I left school early with a note from my mum and doctor and was told that I needed a full bladder for the ultrasound to be truly effective. The ultrasound would be taking place on my ovaries, which is close to the bladder, and you need as much fluid as possible to be in that general area for the doctors to read the scan easier and see if there were any cysts on them.
So in the 15 minute car journey to the hospital I chugged back about a litre of water. I was that awful kid who would always 'hold it' and it has truly messed up my bladder now, as I can only 'hold it' for approximately 5 seconds - hey, when ya gotta go, ya gotta go.
So by the time I got to the hospital I was suuuuper desperate for the loo. I was told not to go to the bathroom until after my scan. So I went in, and exactly like a pregnancy ultrasound, they put a gel on the area they will be scanning.
Combine the freezing cold gel and the fact the doctor was pushing the device directly onto my pelvic area; I genuinely thought I was going to wet myself. I couldn't even concentrate on what she was saying cause all of my focus was going on not peeing unwillingly.
When she had finally finished I ran for the nearest toilet but it was in use. I eventually made it to the loo, and had quite honestly, the longest wee of my entire life. (I think that's the large majority of the over share complete - my bad!)

The results

5 visits to the doctors/ hospital / dermatologist, 2 blood tests, an ultra sound and a potentially scarring life experience down, I was very ready to see what would be determined.
I was told by the dermatologist that everything came back conclusive that I had PCOS. I had several large cysts on my ovaries and extremely high testosterone levels for the average female.

What did the doctors do to help?

I'm so used to doctors shoving paracetamol and antibiotics at me before actually delving into any real medical problem, and I was half expecting them to do the same here. (Please note: I wasn't seeing my usual GP at this point, as previously mentioned, he seemed to be a bit of a div, and I really needed a females advice) The worst thing about PCOS is that there is no cure. There's no way to completely rid it from your body. There are ways to stifle it, and to make your life easier and I was given several options:

  • Live with it - several of the symptoms I was dealing with at the time were physical, and weren't really messing with the internal side of my body. The doctors said there was no harm in just letting it do it's thing for the rest of my life.
  • Remove the cyst(s) - I was given the option to have the cysts removed. My ovarian cysts were very large and I had a LOT of them. This would have been a lengthly, painful and potentially damaging (in the long run, in terms of pregnancy and ovulating) option.
  • Balance my hormones - there's no way of physically removing my excess androgen, but there is a way to balance out your oestrogen and androgen levels by taking the contraceptive pill. I'm not sure on the scientific specifics (C in GCSE Science, clearly not my strong point) but it essentially just evens everything out, which would prevent a number of the symptoms that I was suffering from.
Which did I choose?

I went for the choice of balancing out my hormones. The symptoms I had were bothering me enough to start the doctor saga, so just 'dealing with it' wasn't an option for me. I have always wanted to be a mother and be able to carry my own children, so the potential for me to lose that was also not an option. The fact that balancing out my hormones would help with my acne, facial/body hair and mood disorders was a win win for me. To start me off, the doctors put me on a very high strain of the contraceptive pill (I'm rubbish and can't remember the name) and I took that continuously for a long period of time up until the age of around 18. When I was 18 I switched to a contraceptive pill that wasn't as potent called Yasmin, and that's what I currently take at the age of 23. (I'm probably due to change this soon, as my periods are becoming very sporadic, which is a sign I've been on the same pill for too long)

How I dealt with PCOS at the age of 14

To be honest, not very well. I was a shy, insecure mess, protected (and living in her shadow a little bit) by my older sister, without a very secure support system. At that age, my friendship group wasn't very strong. I was one of those people at school who seemed to outgrow everyone. I was friends with everyone, and easy to get on with, I just never really 'gelled' with a group of people all that well. And if I did, it would be for a short period of time, as I tended to mature a lot quicker than everyone around me. That's not to say I didn't have great friends at that age - just not friends that would truly understand what I was going through. Team that with a ridiculous amount of family drama and I didn't really have anyone who 'got it'
I also grew up in a predominantly white town, which happened to be full of people who thought they weren't racist or shallow, but 1000% were. The kinda people who started a sentence saying 'I'm not racist, but...' and every joke they told had some underlying racial stereotype, or they just outright said the 'n word' and called people the 'p word' for fun.

In terms of the physical side of things, taking the contraceptive pill massively helped me. It reduced the rate at which my hair grew, it wasn't as thick as it was, my acne had gone down a considerable amount, and my mood swings weren't as severe. That's not to say all of the above weren't still prominent in my life, they had just lessened considerably.
At that age, the only things I did to help with all of my symptoms was to wax my upper lip. I have horrifically sensitive skin, and for some reason my upper lip did not like to be waxed (which was handy as it hurts soooooo muuuuuuch). After every wax I would get a huge, thick, red and sore patch and it would harden and scab over and make my life hell. I couldn't eat, talk or laugh properly because opening my mouth wide(ish) and tearing the scab hurt a LOT. I switched to hair removal cream (suitable for your face, and one that was specifically for sensitive skin) and this did the job perfectly.
When it came to my acne, although it had gone down a lot (from continuous cystic acne all over my face, to the odd flare up of cystic acne on my cheeks) there wasn't really much else I could do. I'd tried every product on the market and every home remedy, but nothing seemed to work for me at that age.

How I deal with PCOS at the age of 23

9 years is a very long time. I've only just clocked that I've known I've had PCOS for nearly a decade and so much has changed in that time.

To start with, I've changed massively. I was hugely shy and insecure and hated talking about my feelings or problems when I was 14. I went through that moody emo teenager phase so I was like that up until around 17. Going to uni changed my life; I grew out of my shell, and became more confident and carefree and just generally a better version of myself. When it came to my PCOS it got to the stage that I was comfortable talking about it. Living in halls and my uni house for 3 years, it's hard to hide the fact that I would use hair removal cream for my 'moustache' from my friends. I enjoyed informing my friends that I had it as a lot of them had never heard of it, and I liked educating them on the topic and my experiences with it. I was lucky enough to have had friends at uni who didn't snub it off and were actually really interested in how I dealt with it.
It was safe to say that my support system improved massively. In addition to my group of uni friends I also met my best friend who I live with now whilst I was there. She has helped me be really open about this topic and other aspects of my life. I don't really think she realises that she's actually helped with my confidence an incredible amount.
I think what's helped hugely is that I'm a part of several groups across multiple social media sites. From Facebook to Tumblr, and even to the people I follow on Instagram; I've surrounded myself by people who aren't ignorant enough to ignore and ridicule PCOS and who are supportive and maybe suffering from it themselves. I'm one of those people who is constantly on their phone and on social media (hey, call it my anxiety crutch), and it's so lovely to see all of the support and tips and guidance from women across the world.

In terms of the physical aspects and how I deal with them now, again, a lot has changed.
I still use hair removal cream for my upper lip, as that hair will NOT DIE. I've also started using it for my sideburns as the thick course hair really started to bother me. I'm awful and never keep this up, but it feels amazing for the times that I do remember! I also shave my arms; I started doing this from about 17 years old. It's not really a chore for me, I don't like how thick the hair on my arms get, especially in the warmer months where my arms are more exposed.
In terms of my acne, at the age of 23 it's still very prominent and one of my biggest insecurities. With the help of friends and blogs and forums I decided to cut dairy out of my diet as that can often be a huge factor as to why people suffer from (cystic) acne. Since I cut dairy out of my life I've seen a huge difference with my skin. I still get the odd spot (usually hormonal) and I still have a lot of dark scarring, but the big, sore, red bumpy acne I would get on my cheeks have practically disappeared.
To tackle the dark scarring and discolouration I've been using  Kiehl's Clearly Corrective Dark Spot Solution; which seems to be working wonders (full review soon!)
I've also cut caffeine out of my diet. I have a very low caffeine tolerance anyway, literally 1 cup of tea at about 8am will keep be up till 4am the next morning. BUT caffeine isn't great for PCOS sufferers either as it can spike you oestrogen levels TOO high and cause short term menstrual issues.

How has PCOS affected my life and my confidence?

Honestly, having PCOS is one of the main reasons why my confidence is so low. My main insecurities are my weight, my skin and my excess facial/body hair; which, you've guessed it, are all common symptoms of PCOS. Like I mentioned, I grew up in a very shallow and racist town and was constantly picked on for all of the above. Isn't it crazy what children notice about their peers?? Some of the names I was called were honestly just dumb (hello my incredibly unoriginal and boring town) but they have always stuck with me. Boys were non existent in my life - unless you count them teasing me or doing that thing where they'd 'ask you out' for their friend but would actually be lying. (Not sure if the last one was just me and my horrible school, but hey, people are mean)
I didn't get male attention until I was around 18, and even then it was from people who just weren't Very Nice. So to say my confidence is incredibly low is a mild understatement. But like I said, I've learnt to surround myself with people who love me for all my flaws - PCOS related or not. I'm very lucky to have the friends and family I do, and they're a huge factor as to why I'm coming to terms with having PCOS.

I've also realised it's the main source of my anxiety and depression. PCOS can give you a constant 'melancholy' feeling, as many of the symptoms affect your confidence and self esteem. I've never been on anti depressants and I feel like it's not the correct route for me. As bad as it is to say, I rely on the people around me to help keep my depression and anxiety at bay. That may sound selfish, but this is why I'm so intent on surrounding myself with people who are going to have a positive influence on my life.

What I'm worried about

As I mentioned at the beginning of this post, there are several health complications that could potentially come with PCOS. I worry about pretty much all of them on a daily basis. Diabetes is very common in my family, both on my mum and dads side. The fact that PCOS sufferers are more inclined to have type 2 diabetes is worrying - combine that with my awful sweet tooth and there's definite cause for concern. At this time, there's nothing I can really do about it. I love sweets and chocolates, but I'm not excessive in my consumption. I (usually) know when to stop and I don't think I've ever really eaten a worrying amount of sweet treats.
I have a similar worry when it comes to pregnancy. When I first found out about my PCOS, that was the first thing that came to my mind. Will I be able to get pregnant naturally? Will I even be able to GET pregnant at all? Will I be able to carry a baby for the whole pregnancy? Will I be able to give birth safely if I even get that far? As soon as my baby sister was born when I was 9, I have always wanted to carry my own child, and I look forward to the day that I can be a great mum. A family friend of mine had PCOS with symptoms a lot stronger than mine. She had larger cysts on her ovaries that were probably more damaging to her chances of getting pregnant. Now she's a mother to 2 beautiful babies. Without realising it, she has been my glimmer of hope. She got pregnant naturally!! It's doable!! My panic of not being able to be a mum had subsided when I found out she gave birth to 2 babies.

Online help

Here are a couple of sites/pages that I've found useful after trawling through the internet for 1000 years.

I could honestly spend hours going through millions of different posts relating to PCOS on the internet - very encouraging to know I'm not alone in this!

And I think that's about it.  Thank you so much if you managed to read this whole thing, and I hope you found it helpful and informative.

If you have any questions, or anything else you'd like me to cover, then please let me know!

Post a Comment

Latest Instagrams

© Ram Etc.. Design by FCD.