What it is like living with polycystic ovary syndrome

Gemma, 33, lives in Portsmouth. She was diagnosed with polycystic ovary syndrome (PCOS) when she was 13.

I have lived knowing I had polycystic ovary syndrome (PCOS) for about 20 years and still I do not fully understand the condition. Anything I do know about it is from the research I have undertaken.

My periods

For what seemed like a million years but probably, in reality, six months, I would get all the signs and symptoms of a period but without the bleeding.

I would have excruciating pain, headaches, mood swings, spots, significant hair growth in all the places you don’t want but no bleeding. Each month my mum told me this is the month you are going to get your period, in this strangely excited voice but nothing came.

Read more: What it is like living with endometriosis 

Then one month it did, and wow did it come with full force! I wasn’t looking forward to the next month, I was in so much pain and the heaviness of it was making me feel sick. I was so heavy that I was even having clots appear (which as a young person dealing with that for the first time is a bit freaky). The headaches seemed worse, and it lasted over a week.

The second month was the same and it felt like I had only just finished the last. However, when mentally preparing myself for the third one I had nothing it was so strange. It was same for month four and five. Then all of a sudden out of nowhere (not even to schedule) another one came but this one was to stay for a while, closer to a month of bleeding not always heavy.

I started to think my period was playing hide and seek as it would seem to disappear and then come back. The next couple of months were the same, I would have anything from an 18-day cycle to a couple of months and they would last anywhere between eight days to weeks.

Getting diagnosed with PCOS

Initially, they carried out a number of tests to find the source of the pain and other symptoms, though strangely enough nothing linked to periods.

In the middle of these investigations my first period came and at first, the doctors suggested the erratic behaviour of my periods was because they were starting.

I had been reading Victoria Beckham’s autobiography and she had mentioned polycystic ovary syndrome (PCOS) and the symptoms she had. It struck something inside me that made me think that’s me, but dismissed it as I had assumed that something as simple as that the doctors would have checked it.

Now back in my day the internet was a new thing however, my mum managed to find a little bit of information on PCOS. The symptoms matched what I was experiencing so on one of our many trips back to the doctors (and seeing a specialist in female health) my mum mentioned PCOS as a possibility.

Well, I still remember the doctor’s reaction. I don’t think anyone in the room was in doubt that she was the doctor and the specialist in this area. They basically said because I was slim I couldn’t have it.

But I bet you didn’t know men can also suffer from it, as the cyst on the ovaries is a symptom, not the cause. Further blood tests were done and my thyroid was looked at again but those tests showed nothing.

Facing challenges

I’m not sure how long it had been between that incident and the next visit to the doctors but again we had to see the same doctor as my periods had vanished again.

I was a very shy 13/14-year-old, who had been bullied on a number of occasions. I had only just had what I would say was my first (unsuccessful) kiss, embarrassed by the period that seemed to have a mind of its own and would appear at any point.

I walked reluctantly into the doctors annoyed it was the same one who didn’t seem to listen and frustrated that we had no answers. I can’t really remember how it got to this point but what I do remember is that she was in my face (well it felt like that) calling me a liar, saying it would be better if I confessed I had been having sex and was pregnant as she and my mum would find out from the blood test she was going to do. I am not sure how many times I said I hadn’t but I came out of that doctor’s office feeling awful and like the whole waiting room was just looking at me as if I had done something wrong, but I hadn’t.

I wasn’t lying and I couldn’t explain why my periods had stopped, (now being older and less shy, I wish I could tell my younger self to say to this doctor ‘I don’t know why my periods have stopped, I am not a doctor that’s your job’).

My bloods were taken and not long after we received a telephone call from one of the nicest doctors ever say that my bloods had shown something and I need to come in and that they were finally going to have answers to my issues.

Getting an answer

I went into the nice doctor’s room, where he informed me that the blood test results showed that my testosterone levels were high and that this indicated that I had PCOS, along with all my other symptoms.

Not going to lie, I did give my mum a quick cheeky look and in my head said ‘oh really’. If I am honest, I am glad I had my mum with me as after a few bits of information my head was about to explode.

He put me on the pill and sent me on my way but I am still trying to find a solution that works and have been through all the pills there are. Each one had either a side effect that I didn’t have before or didn’t make a difference to my symptoms.

It is still a battle and each time I speak to someone who has PCOS, they have had a different experience, different tests done and different information given. It seems to be a minefield but it appears that because there is no risk to life, little research or time is given to investigate it.

My symptoms now

I have irregular, painful and heavy periods when they appear. They can be absent and I can’t tell you my cycle or pattern. I have to just make an educated guess but don’t always get it right.

I have hair growth where I don’t want it but lose hair where I do what it. I am 33 but still have the skin of a teenager. I can get migraines just before, during and at the end of my period.

Periods are a fact of life and not something that we should hide away from. They shouldn’t make us feel dirty but when you are constantly having to change your towel or tampon (or on those bad occasions at night you have to wear both not to soak the bed) and you have to change clothes, it does start to make you feel a bit unclean. I just want to shower all the time.

How it impacts me

Like many other suffers of PCOS, I struggled to get pregnant. I stopped ovulating for two years!!

And when all your friends are getting pregnant by just looking at their partner it was mentally draining. It was a strange sense, you wanted your period so you knew you were ovulating but didn’t want to because it meant you weren’t pregnant.

Like many hidden illnesses you can’t see inside yourself to see what is going on.

I have the coil at the moment and that brought me relief for a while but I am starting to think that it was just absent periods because of my PCOS.

They have started to come back heavier and I am feeling like a teenager all over again. Part of me thinks there is no point going back to the doctors as I will just get the same old thing. I have got to the crossroads where I either live with the fact that I am so frustrated no one is listening to me or I start becoming a problem and annoying them until someone does.

My advice for others with PCOS

Everyone I have spoken to has had different experiences.

Make sure that you are telling the doctor everything. Write a period diary including things about pain, length, heaviness and any other symptoms. Also just because you do not have all of the symptoms don’t let that put you off. I was apparently too skinny to have it but now I really struggle with my weight, I am no means overweight but I do have to be careful. Those with PCOS are prone to type 2 diabetes and so being careful what you eat is important.

It is harder for someone who has PCOS to lose weight so if you have some of the symptoms and are struggling to lose weight regardless of the work you are putting in contact your doctor. Particularly if you are trying to get pregnant as it can be a vicious circle.

Talk to your family and friends. Tell them what is going on, they can help and it will make things less embarrassing. Particularly at times when ‘Aunt Flo’ shows up with no notice.

Talk about it

People with PCOS are more prone to depression and anxiety so the more we talk and the more open we can be, the better. It also makes it less of an issue that you feel you have to hide what can feel like a dirty secret.

Keep going. It is hard but as and when you get a diagnosis get your doctor to find out what they can about your triggers and what you can do to help. This will help you manage your symptoms and help with how you deal with the issues PCOS throws your way.

As I write this it, I realise what a journey I have been and continue to go on. It sparked a renewed interest in pushing the doctors to look into this more and give me answers. They might not have them but there has to be someone out there that does. So I have now booked a doctor’s appointment and onwards I shall go.

To find out more about PCOS, visit: www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/

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