Trini’s PCOS story
“PCOS impacted every aspect of my life. The insomnia was unreal, but also massive feelings of isolation, cause I just felt very very ugly.”
Trini had her first period when she was around 12 years old. And right from the onset they were heavier and more painful than what should be considered normal - but with very little frame of reference for what a ‘normal period’ is and without knowing how to talk to her friends about it Trini just assumed that this was what it was supposed to be like.
‘I found it all terribly embarrassing because I was such a heavy bleeder. It was like a ‘three granny-pads and black trousers of school vibe’. So I was just horrified at the thought of discussing it.’
Toxic cool-girl vibes
Whilst her periods were heavy, they were at least regular and with a midwife mum, who knew that sometimes a teenager's period can take a while to settle to a ‘normal’ level no one thought to make much of a deal about it. Least of all Trini, who just assumed that this was what a period was supposed to be like. Because all periods are meant to be painful right?
‘There’s a really toxic element of female comparison and pain, which I think is an unspoken issue amongst women and feminists. We are terrible as women at looking at other women who go: ‘I am in pain, and I am hurting’. And then going: ‘Oh yeah? Well, I get that too. And I don’t make a fuss about it. Why are you fussing about it? We all bleed!’
‘Men encourage this too because there’s this idea of a perfect woman who doesn’t even have a mood swing. So, especially when you are a teenager this ‘cool-girl’ vibe feels very intoxicating, and you want to get involved in it. I think that might be why as teenage girls we don’t talk so much to our friends about the difficult things.’
When Trini was about 16-17, things got increasingly worse and she started taking the combined contraceptive pill, which helped with the physical symptoms but was accompanied by some incredibly toxic mood swings.
A very dark time
At 19, and now at university, Trini suddenly went through a massive growth spurt which caused her to be anaemic and have fainting spells. At the same time, her periods were becoming heavier and heavier. Trini went to see her GP about the fainting and shared her concern about the heavy periods, but it was all put down as related to her growth spurt.
‘[also] I was a student at the time, and going out and drinking loads of beer, so I was hardly looking after myself, so I also thought that it was probably also just my own fault.’
But the symptoms, both physical and mental, took a real toll on her.
‘PCOS impacted every aspect of my life. The insomnia was unreal, but also massive feelings of isolation, cause I just felt very very ugly. I was experiencing other PCOS symptoms like hair growth in weird places and hair thinning at the top of my head. I just constantly felt like a giant walking around. I’d had this massive growth spurt, and now I was growing a beard. The body dysmorphia still impacts me today.
‘It was quite a dark time. I had no idea what was going on and I just thought that I was unfeminine and less than.
‘I was in therapy at the time, and now at 30, looking back I can see that a lot of the reasons why I was seeking help were directly linked to my physical symptoms of PCOS. A lot of my depression and negative feelings of the self were bound up in what was happening with the physical shell too.’
A ruptured cyst, and finally some answers
Things really came to a head when Trini was 21. She was experiencing a lot of heavy menstrual bleeding, which sometimes lasted 4-6 weeks at a time, and one evening, whilst working in a call centre, Trini suddenly got a crippling pain in her lower stomach, which got so bad that she ended up in A&E. The staff there let her know that it seemed as if she was having an unusually heavy period, and Trini told them that this was just how they were for her. She was promptly told to go back to her GP and ask for some answers.
‘I’ve also at this time, because my periods have either been incredibly long and heavy, or non-existent, had about 6 pregnancy scares, even if there was no way I could be pregnant, but I was convinced I was. I was just very confused by the whole thing.’
Trini went back to her GP, and this time she brought her mother along who coached Trini in how to describe not only the type of pain, but also how it affected Trini’s life. And Trini was finally referred to a gynaecologist.
Then followed a year of testing and trialling out various medications, until, at the age of 23, Trini had a laparoscopy to investigate for suspected endometriosis. The results came back, and whilst no endometriosis was found, it was clear that Trini was suffering from PCOS, and that the pain she had suffered that evening she ended up in A&E was most likely from a polycystic cyst rupturing.
‘They think I’d probably had two or three ruptures in the time leading up to the surgery as well, due to the amount of fluid in my pelvic region.’
The unfair backpack
During her surgery Trini also had a mirena coil fitted, and five years ago, when having her coil replaced, Trini was told that if she wanted to have biological children, she’d better hurry up, because her chances of conceiving were not looking good.
And with that message has come resentment - resentment of the system, but also sometimes resentment at those around her who haven’t had to consider whether they can or can’t have biological children.
‘Now at 30 I feel like I have all these things to think about when it comes to childbearing, and it doesn’t make me very happy. It’s really upsetting to think that time that other people get to have, to make a decision about whether they want to have biological children or - I don’t get that. I feel like that decision has to be rushed for me. Because of something with my body and because I don’t trust our healthcare system very much with my body. So that sucks.’
‘One of the hardest things as growing up as a woman is that you have this extra backpack to bear, filled with miscarriages and hair growth and bleeding and Doctors who don’t take you seriously and I think it is terribly difficult for all women and we have to start talking about how common these [reproductive] issues are across the board, and how okay it is to be really angry about it, without being angry at each other for it.’
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