Life before diagnosis

Leona had been experiencing the symptoms brought on by endometriosis since the tender age of eleven, affecting her school life and mental health.

“When I was in secondary school I use to have to miss a lot of classes because of the debilitating pain I use to experience and my parents took me to a lot of specialists when no one could identify what was wrong.”

“I was admitted to the hospital so often that my immune system just gave up and I used to get even sicker. Doctors often thought it was IBS or bad acid reflux resulting in ingestion, some thought I also had stones in my kidneys but after doing tests they found nothing and they just stated that it was perhaps a bad infection – despite no trace of infection being found.”

“I was given a lot of antibiotics throughout the years, as well as morphine to numb the constant pain. No one could find what was really happening inside me because at that point there was very little knowledge of endometriosis.”

“I remember having really embarrassing conversations with doctors at the hospital, as I had begun getting my period at the age of eight/nine years old. So the first time I was admitted, doctors were asking me (in front of my parents) if I had been sexually active.”

“I remember I wanted the room to swallow me up.”

“At that young age, I didn’t even know what was happening to my body let alone have to answer questions of this sort.”

“Obviously one can understand that doctors have to ask mandatory questions to gain more insight but I feel like every time I complained about my pain people were more interested in my sexual health and activities rather than the actual problem. “

“I was put on the hormonal pill at the age of 13 and was told I will no longer get ‘bad periods’, but I  got severely depressed and had to come off it after years of suppressing whatever I had inside me that was affecting other organs and not just my reproductive organs.”

“To cut a long story short in August 2019 I moved to the UK and came off the pill. The pain got worse and I decided to see a doctor.”

“It took me a couple of times to find the right doctor but luckily one practitioner took me seriously and having asked really relevant questions, he told me about the possibility of having endometriosis.”

“I didn’t really know what this was and he referred me to an endospecialist – the beginning of the journey to diagnosis.”

The late diagnosis

Sadly, Leona only received an accurate diagnosis eight years after starting to struggle with the condition, when she moved to Brighton with her band.

“It was one hell of a journey!”

“I got my diagnosis in June 2022 after more than eight years of struggle. I had been going in and out of the hospital since the age of 11 when I first had symptoms of endometriosis but sadly no one in Malta ever mentioned that I might have this condition.”

“What really got to me all these years is that no one ever really took the condition seriously, the lack of awareness in the healthcare system meant that it was only picked up as a possibility when I moved to Brighton in the UK.”

Life with endometriosis

Given that Leona is the frontwoman of her all-femme band, they’re often on tours and booked out with nightly gigs – this can get challenging at times when dealing with endometriosis. But there are a number of things that she does which help her have a higher quality of life.

“Aside from having a full-time job, I am also a touring artist. This debilitating illness can sometimes leave you in bed for days rendering you unable to undertake simple tasks.”

“Some workplaces have not been very supportive but thankfully my current job is really trying to help me have better work conditions and raise awareness.”

“When it comes to the band and touring it can be very difficult as I get tired really easily, but despite this, we are at a stage where at least we have comfortable accessible venues and accommodation whenever we tour so it is not as challenging as it used to be when we first started.”

“I do however have to work hard to maintain and help my chronic illness – I choose to go to private physiotherapy and regular restorative yoga classes for the pelvic pain – as well as regular acupuncture.”

“All of this costs a lot of money and I found that in the long term, this works better than relying on painkillers or any other heavy medication that can create other problems.”

“I’d like to think that this is an investment for myself and that finding the right food and doing the right exercise it will not only help to manage the pain but also help me mentally.” 

“Being in a relationship whilst also getting the diagnosis was a turning point for my partner and me – a lot of doctors suggested I should plan for a baby before I turn 25 as that it would be very unlikely for me to have the possibility of getting pregnant due to the fertility issues that comes with this condition.”

“As much as I  can understand this reasoning it feels pretty pressuring to assume someone is in a position to want or to do this. Being pregnant does not cure endometriosis and putting this pressure on someone was an additional burden. “

“My partner is very supportive and understanding of the situation, but it can get very tough whenever I am in pain as it makes the other person feel like they need to react, but in reality just being there is enough sometimes.”

“I am lucky enough to also have a lot of friends and family who can help, after I undertook my operation a lot of women came forward and messaged me about their experiences and it has helped with the journey altogether. It feels very wholesome whenever women can discuss their experiences freely in order to understand each other and create awareness. “

On Veganism and Movement

Leona explained how following a vegan diet, making sure she keeps active, and trying out different birth control helps with managing the condition on a daily basis. This is key when it comes to endometriosis, given that there’s no cure for the condition.

“I eat really clean and have been following a vegan diet for more than eight years now. I feel that eating clean and quitting alcohol helped me to manage and limit flare-ups. Obviously this doesn’t work for everyone but since I also developed high cholesterol alongside endometriosis, a plant-based/low gluten diet works best for me.”

“Sports have always been an important part of my lifestyle ever since my dad encouraged me from an early age. It comes pretty naturally to me, and these activities help me keep positive about my body.”

“I really like running and its effect on mental health, but when long distances aren’t possible with the condition, I take shorter bursts alongside a mixture of boxing, yoga, spinning and wild swimming.”

“The difficulty is that many of these activities cost money, which I can understand that some sufferers can’t afford. Living in Brighton means the sea is available to most, I cannot stress how good a chilly swim is for your body if you suffer from chronic pain. It releases so many endorphins.”

“I also have an IUD which my body is still getting used to, which is supposed to minimise the menstrual flow and help with the pain – however it is not really efficient enough at the moment in my opinion.”

“The journey is obviously always ongoing as there is no cure for endometriosis, I think most of the previous points explain the process of trial and error in order to find whatever works for you.”

The need for more awareness

Even though Endometriosis is a word more often on people’s lips than years prior, awareness can never be enough.

Asked whether more awareness is needed in Malta, Leona said: “YES! 100 percent! Starting from the healthcare system, employers, and friends and family! Endometriosis is under-recognised, understudied, poorly treated, and often under-diagnosed (as illustrated).”

“I feel like there is more pressure in the UK after a lot of campaigning, however, there is definitely still a lot to be done. Considering that the waiting list for diagnosis in the UK is eight years is quite problematic on so many levels – especially as it is a condition as common as diabetes.”

“Most individuals still think that some women are just experiencing ‘bad periods’ and that the condition is only related to the reproductive organs.”

“Endometriosis can, however, affect other organs and it should be taken seriously as something that frequently interferes with everyday life. Speaking to others who understand has been a real blessing to me, it helped me to get through my time post-laparoscopy and to understand more about this often alien-feeling condition.”

Leona’s message to women out there:

“My sisters, if you are currently struggling with pain, you are not crazy – debilitating pain is not alright.”

“Do not let the pain you are experiencing break you because there are options out there. Speak up because you are loved and there will be individuals who will help you with your journey.”

“Keep on fighting and don’t let anyone take you for granted! Let’s break the taboo and help spread the awareness, seriousness, and frequency of this condition.”

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