“A decade on from my official diagnosis of endometriosis, I can only say that it’s been ‘interesting’ – in more than one sense of the word. And that’s after it took 8 years, from when I was a teenager, for a doctor to take me seriously and ask for the various tests I needed to get the diagnosis.
I arrived in the UK after I finished school. By then, I already had gynaecological problems. Those hadn’t been taken seriously, and so, I tried to ignore them and carry on. It wasn’t until I was 19 and in my second year that I finally decided to visit the health centre at my university to discuss my pain and heavy bleeding. I very quickly learned that if you’re a student presenting with gynaecological symptoms, it’s often assumed to be because of your lifestyle. I’d had a very sheltered life until I came to university; this was an additional shock to the system.
I gave up at that point, and it wasn’t until after I’d finished my PhD, aged 25, that I tried again to get any answers. Unfortunately, I didn’t have much better luck this time either. I was told that it was in my head and that all women get difficult periods. A couple of years later I moved to Surrey and saw a doctor who actually recognised it could be endometriosis. I was 27 at this time, when someone finally started to investigate.
In the course of 6 months, I had three MRI scans, a laparoscopy and goodness knows how many other tests. Even then, the male consultant didn’t take me seriously, but after I had the laparoscopy he actually apologised. He told me I had one of the worst cases of grade 4 endometriosis there is – it had taken up the entirety of my pouch of Douglas which is connected to my uterus, my ovaries were stuck together, and it had started to attach to my bowel.
I had a series of fairly serious flare-ups after my husband Calogero and I got married, possibly because I was stressed at work. That was the year I was referred to John Radcliffe Hospital, one of the leading endometriosis centres in the world.
Even at John Radcliffe I’d occasionally get male consultants who would talk to my husband rather than me. This behaviour escalated to the point where Calogero actually walked out of the room one day, having said, ‘mate, I’m not your patient, she is, talk to her’. He was upset, it had been so hard and he knew my frustration. One of the hardest things about living with endometriosis is the complete loss of dignity and control; the flip side of it for Calogero is watching his wife go through this.
When we moved to West Sussex in 2018, I had to move GP surgeries again. I wasn’t able to register at one with endometriosis specialists, so I ended up at a surgery that simply happened to be taking new patients. Due to a lack of understanding from the doctors I initially saw, I spent 2 years on medication that was actively making things worse. I had spent 8 years on a combined pill that kept me relatively stable. But then Brexit happened, the manufacture of a lot of hormone-based medications halted, then stalled, and my new surgery just cycled through a list of potential alternatives without any real understanding of what the effects on me might be.
From then onwards it felt like I was stuck in a car driving into a disaster – I could see it coming, but had no way to prevent it. Various facilities were playing ping-pong with me. I was told I should be in the care of the gastroenterology department, who then tried to send me back to gynaecology. Even when gynaecology took me on, one hospital referred me further saying my situation was too complex for them, while another said there was a 3-year waiting list.
The pandemic further compounded matters. Endometriosis may be a gynaecological condition, but when it’s as serious as mine it affects everything. MRI scans have picked up issues with my musculoskeletal system and my levels of iron, haemoglobin, potassium and folic acid are always out of whack. Because my body is constantly being pushed between artificially-induced temporary early menopause, and having to allow breakthrough bleeds due to a revolving door of hormonal medication, I have painful bloating, nausea and my internal thermostat doesn’t work. I’ll be bundled in a blanket while my husband wears a T-shirt. Then there are occasions when he’s wearing a warm jumper and I’m in a dress with no socks saying, ‘why is it so hot?!’
In one set of medication changes, I was taken off the combined pill and switched to progestogen-only. As a result, I quickly gained weight and experienced a lot of bloating, but I was also having periods constantly. This was literally the opposite of the desired outcome as the more bleeding there is, the worse the inflammation gets because my body is incapable of flushing out the new menstrual blood.
The more doctors tried to stop my periods, the more heavy, painful ones I was having. Recently I started to bleed so heavily that I had to do 2 loads of laundry in the middle of the night, and the water in the shower ran red for 10 minutes.
My mum, who was in India, had a complete freak out at me. Through all this pain I’d been stubborn because I was told so many times in the past that this wasn’t serious. But under the guise of doing my mum a favour, I logged into the Livi app to speak to a doctor. Unbelievably, I got an appointment within 45 minutes. The GP who looked after me, Dr Williamson, explained that on the medication I was taking, I’d be expected to lose no more than 3 tablespoons of blood over the course of an entire period. I was losing 4 every hour.
While Dr Williamson looked at my medical history, I took my blood pressure at home. She looked at the numbers and immediately checked my records to see which hospital the consultant I had most recently been referred to was based at – CEMIG at St Peter’s Hospital, Chertsey. She must have been my guardian angel because she rang me back 10 minutes later (having said it might take her half an hour to get answers) to tell me to go there immediately, with a letter she provided me through the app.
Additionally, she stayed on the phone with me for 20 minutes to talk things through and keep an eye on my blood pressure readings. Due to the location-neutral nature of the doctor–patient relationship through Livi, as Dr Williamson didn’t know where I was in relation to St Peter’s, she also went above and beyond to make sure I’d be able to get to the hospital, and that I would have someone with me.
At the hospital I had IV medication and a blood transfusion because my haemoglobin count had dropped to 72, and they prescribed me a 21-days high dose of tranexamic acid, alongside a super-high dose of norethisterone to stop the bleeding, and iron tablets to help with the depleted iron levels. If I hadn’t received hospital intervention that day, it’s not too much of a leap of imagination to think that I could have bled to death.
That day, I also got to see the dire straits the NHS is in – they wanted to keep me in but they physically didn’t have the bed space. By 10pm, they had got me to a position where I was able to walk out of the hospital on my own 2 feet. I was having some wobbly moments but used my husband as support to hold up.
In the weeks that followed, it was found that I had fibroids contributing to the bleeding, and ovarian cysts that need to be taken out or else they could burst. I was also experiencing nasty side effects from the assorted medication I was given. This is when I used Livi to book a follow-up appointment with Dr Williamson, who gave me some interim medication and had another conversation with St Peter’s. This was my first experience of being able to see the same doctor more than once, and she’s now the GP leading on my endometriosis management until I can have surgery.
The problem with living with this chronic condition is that it limits my abilities. On my journey with endometriosis, my condition has worsened, things have gotten harder, and my life has gotten smaller. If it hadn’t been for my husband, I’m not sure I would have managed. Even the strongest person needs to derive strength from someone, and Calogero gives me strength on a day-to-day basis.
He arranged this bright corner for me when I got back from hospital so I’d have something pretty to look at, because he knows I love plants. He’s made sure the little things around the house that I use most often are at my reachable height so I don’t have to stretch when I’m in pain. There are so many errands around the house that I haven’t done in years because he won’t let me. My knight in shining armour jumps to my rescue if someone says something hurtful. I am very grateful and aware of my privilege in having that kind of support.
With an invisible illness, I’ve had so many people say, ‘but you don’t look ill,’ even people who should know better. Now at 37, I am hopefully getting towards the end of the intrusive ‘are you sure you don’t want children?’ I have gotten a lot more brutal in my responses to these things. At 19 I wouldn’t have had the confidence.
The judgement needs to change. More awareness needs to happen. We need to stop normalising that women should live with pain. When you’re a young woman, gynaecological problems are often linked to your lifestyle, and when you get to your 30s, everything becomes about whether or not you can be a baby-producing factory.
I’ve spent a large part of the past 10 years being a very outspoken advocate for women’s health. I do not want another young person to go through the same as me. It took me until my 30s to get the confidence to tell male consultants that I am the expert on my body. Reading is a major part of my identity – when anyone thinks of me they think about books. But when it comes to women’s health, no amount of textbook learning can overrule our lived experience.”