Fay’s Endometriosis story
“Every day I’m in some form of pain. There’s a fatigue that comes with it and with the pressure of trying to live a normal everyday life.”
Having struggled with heavy periods since the age of 14, Fay became used to missing school, social occasions and family events growing up. ‘Doctors just said what I was experiencing was normal and nothing to worry about, then suggested I try the pill. That helped for a little bit, and then I switched to a Mirena coil. I had it for years and my periods stopped, so it was fantastic for me. But I started to have lots of problems with cysts in my ovaries every month and started to get heavy periods again, started to get lots of general aches and pains on a daily basis. When I asked about my new symptoms, doctors said it was just nerve pain related to an emergency surgery I’d had in my twenties to get my appendix out.’
‘I went to do my nurse training when I was 25, and I had hellish problems attending university because of the pain. There were some weeks I had to attend lectures from home, and nobody knew what was going on. But it only made me more determined to finish my training. I just thought, there needs to be more people who have the grit to fight for women’s health.’
Demanding answers
When she was 28, Fay made the decision to see a gynaecologist about her increasingly troublesome symptoms. ‘In the appointment, I was basically told that there was nothing wrong. The gynaecologist thought a lot of my symptoms were more to do with mental health problems so he referred me to a psychiatrist. It was very dismissive, I was almost made to feel like I was making things up for attention, and that’s not the case at all.’
‘When I eventually got a psychiatric appointment, the psychiatrist said: “I don’t actually know why you’re here because it’s very obvious that there is something medically going on”.
Hearing this from the psychiatrist was a big relief for Fay: “I’d been questioning my own sanity. I knew it wasn’t normal to be bleeding so heavily that I was passing out with the pain. I was having to sleep on puppy training pads, I missed so much work, and I was even afraid to book holidays. But I just carried on pushing and pushing for gynaecologists to listen to me because I knew something wasn’t right. It was exhausting.’
An uphill battle
In 2020, Fay underwent her first diagnostic laparoscopy. ‘After the surgery, I was told I had endometrial scarring on my bladder, and that they couldn’t find anything to indicate that I had endometriosis, but that I might have adenomyosis.’ When Fay sought a follow-up appointment to discuss these results, her healthcare providers told her they couldn’t offer her any further help because she had moved to a different part of Scotland, so she needed to contact her new GP for treatment instead.
‘The whole experience was very hurtful. I thought: it’s bad enough that I was a colleague of yours and this is how you’re treating me, but how are you treating other women that are coming begging on their knees for help? It frightens me that we’re in 2024, and recent statistics show that in the last 20 to 25 years, there’s not really been any change in how endometriosis is treated. It’s not just a heavy period; it affects every aspect of life on a daily basis.’
At the age of 30, after a second laparoscopy and dealing with symptoms for 16 years in total, Fay was told that she had endometriosis.
Living with chronic illness
After her second laparoscopy, Fay noticed an improvement in her pain levels for about 9 months before her symptoms began to flare up again: ‘My endometriosis is quite volatile. Sometimes it seems to be controlled quite well, and then there are other times that it’s just absolutely relentless, and nothing seems to help.’
‘Every day I’m in some form of pain. There’s a fatigue that comes with it and with the pressure of trying to live a normal everyday life: going to work, going to the gym, trying to have a social life, eating your vegetables. I have counselling every month too: it’s so important to have that outlet where I can just speak because managing this condition feels like a full-time job in itself. People don’t realise how much effort it actually takes just to put yourself together and be a functioning person when you live with a chronic health problem.’
Fay recently made the decision to go through a medical menopause to protect her fertility: ‘It has been suggested to me a lot over the last 4 years, and it took me 4 years to make the decision to try it. What women would go through naturally over 7 to 10 years in the menopause, I went through in 7 weeks. I was on a combination of patches and injections, some of which were the wrong doses, so they were working against each other rather than together. It wasn’t until I appeared at my gynaecologist’s office in hysterical, unconsolable floods of tears, that he asked about my prescriptions and realised what was going on.’
Navigating life after diagnosis
‘You can lose your identity through having a diagnosis, you can lose a sense of who you are. I don’t want that for myself, and it certainly happened a couple of times over the last couple of years, but I just want people to know that there is a life outside a diagnosis.’
‘I want women to see that you can have a chronic health problem and still lead a good life, I don’t want them to think it should hold them back from doing the things they want to do. Looking after yourself and doing what is right for you isn’t selfish. Endometriosis is a really debilitating illness. It’s not demure, it’s not cutesy; it’s vile and ugly and stubborn. But I’m more stubborn, and I’m not going to let it win.’
‘Yoga really helps, and I’m also a massive hill-walker. Crossfit honestly gave me a new lease of life, it isn’t just about the exercise, it’s the community. It’s the support I get from my gym, and the discipline and determination it teaches me.’
Confronting the unknown
Fay is currently recovering from her fifth laparoscopic surgery in the last 4 years. ‘I had this pain in my right hip going down my leg, which is very similar to sciatica, but I knew it wasn’t sciatica. For months I was being told by doctors to go to physio; they thought I’d injured myself at Crossfit or tweaked something when I’d been hiking. But it turned out that I had endometrial spotting on my uterus, and since my recent operation, the pain has gone. When you live with a chronic health problem, you know your own body, and I think that doctors need to listen to patients more often when they tell them something’s wrong.’
Fay has been staying with her parents while recovering from surgery. ‘Friends and family are absolutely my main support system, I wouldn’t be able to do life without them. My mum and dad actually decided to relocate nearer to where I’m based in Scotland so they could be closer to me because of my health.’
‘My platonic, familial and intimate relationships have all been affected by my endometriosis. I was dating an incredible person up until my recent surgery, but we parted ways while I was in hospital, which was really hard. I find it difficult to date with my condition. Of course, I would like to meet my person and have a family, but sometimes I worry that I might be robbed of that opportunity. The honest answer is that I don’t know if I can have children. I’ve never been in a position to try, and I’m certainly not going to go and have a child in the hopes that it makes my endometriosis better.’
‘I’ve become friendly with a lot of women through Instagram and Facebook support groups, so I’m hoping we can meet up once I’ve recovered fully. Endometriosis is still very much an illness where everyone’s learning at the same time; we’re all here to help each other. I’ve learnt so much from resources like Endometriosis UK, Freja’s, and Instagram accounts like @theendocorner. It’s amazing that women’s health is being spoken about more online, and it’s so empowering that people are being taken seriously.
‘We’re all in this together, and it's so important to be around the right people. But ultimately, you are the only person who can advocate for you. So don’t give up, grit your teeth and just fight, because your health is the most important asset you have.’
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