Carol-Anne’s PCOS Story
“The more I share my story and the louder I get, the more power I take back for myself.’”
‘I can only describe the pain in one of two ways. If you’ve seen the movie Alien, it’s like a xenomorph is trying to burst out of your body, but can’t. If you haven’t, then picture someone using hot knives to have a rummage through your entire bowel system. Yeah, it’s pretty gnarly.’
Carol-Anne can’t recall a time when her periods were bearable. The monthly ordeal of heavy bleeding, intense pain, and nausea began during puberty, becoming a defining feature of Carol-Anne’s teenage years.
‘I knew my period would always be at a certain time of day during a certain class at school. I remember I would kind of be okay for the first half of the lesson, and then in the second half I would start to feel nauseous, and the pain would get worse and worse. It was so excruciating that the walk home would take me twice as long as usual.’
After leaving secondary school, Carol-Anne was prescribed the mini-pill. Having entered a new relationship, she approached the GP to discuss contraceptive options: ‘I was still struggling with my symptoms, and I had some other issues like headaches, so the doctor said the mini-pill would be the best bet for me. It stopped my periods for almost 7 years, so I didn’t really notice anything was wrong.’
A small pill with a big impact
In November 2021, Carol-Anne made the decision to stop taking hormonal contraception. ‘My relationship had ended and I thought I’d come off the mini pill. Once I came off it, I realised how much the mini pill had affected me. My libido had completely crashed, my mood was affected and I hadn’t had a period in five months.’
Carol-Anne approached her GP in March of 2022 in order to investigate her symptoms. After receiving the results of Carol-Anne’s blood test, in which her testosterone levels were slightly elevated, the doctor suspected Carol-Anne might have PCOS.
‘I remember them telling me: ‘It seems quite mild, so unless you try to get pregnant, and can’t, then come back to us; other than that, here’s the NHS article, off you go.’ I’d never heard of the condition before, so it was very frustrating.’
In the following months, Carol-Anne’s condition became increasingly unmanageable. During her 30–35-day cycle, Carol-Anne became accustomed to experiencing extreme fatigue and mood changes, as well as severe bloating. Describing the periods themselves, Carol-Anne says: ‘The flow got heavier, the pain increased, the nausea was vile and the mental effects sometimes got very bad. I changed jobs and started working from home, but I had to call in sick frequently because the pain was so debilitating.’
Carol-Anne was prescribed tranexamic acid during this time, which lightened the flow of her period, but didn’t improve her pain levels. Concerned, Carol-Anne returned to her GP. ‘I told them it wasn’t doing anything, and they told me to go on the pill. I said I didn’t feel like I wanted to because of the effects it had on me, and because I didn’t speak up about it at the time, my GP was like: ‘well there’s nothing on our record about that.’
A life unraveling
Carol-Anne left the GPs office with no real plan for how to move forward, and no desire to return, even though both the private and professional aspects of her life were suffering.
‘Because I had to call in sick so many times during the trial period for my job, my probation got extended and I was close to being let go, which was really rough. It made me nervous that I had to take time off for this because I had to, but I didn’t always feel like it was an option.’
Then Carol-Anne moved to a new city, and things turned around. In March of 2023, she went to speak to her new GP. ‘In my first appointment, I told her I was having to take time off work and needed to get this investigated. She asked me to tell her what was happening in my own words and to tell her the timeline. She requested blood tests, and a physical exam and suggested ultrasounds if necessary.’
The tests confirmed that Carol-Anne has PCOS. ‘When I was going through puberty I suffered from terrible headaches, as well as really bad cystic acne on my chin and back. I didn’t really put two and two together until I did more research, and I now realise that these could have been early signs of PCOS. I also found out recently that PCOS, endometriosis, and fibroids all run in my family, so things are making a bit more sense now.’
Despite her invaluable, supportive network of friends and family, as well as a new employer who lets her work flexibly around when she needs it, the impact of Carol-Anne’s condition is devastating.
'There comes a point of not really remembering being pain-free, which is a very difficult and isolating way to live. During the first two days of my period, when the pain is at its worst, I can barely stand up to cook, go to the toilet, or get some water. At these moments, if someone were to just come along and put me out of my misery, I’d take it.’
‘It’s horrifying when you’re usually fully capable of taking care of yourself, and then you’re essentially put in a position where it’s almost impossible to do so.
I am lucky that stubbornness is part of my disposition because it makes me want to go out and live life anyway. That’s not to say that people who endure chronic pain should have to be stubborn all the time, because that’s not fair. It’s just as important to take time to recharge, otherwise, it’s easy for the battery to become empty just by living daily life.’
Connection is the key
Carol-Anne firmly believes that connecting with people who share the same experiences is essential when living with reproductive health conditions. Speaking to those who can identify with her story, Carol-Anne says: ‘know that it’s okay that it feels extremely isolating at times even if you do have a good support system. It’s okay to take a bit of time to try to deal with it yourself, but it’s also about allowing others in when it feels right.’
‘The more I share my story and the louder I get, the more power I take back for myself.’
At the moment of publication, Carol-Anne was awaiting a referral for a laparoscopy to determine if she is living with endometriosis as well as PCOS.
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