But you don’t look sick...

I was 14 when I started collapsing monthly, thinking this was ‘normal’ just part of being a woman. When I felt my head go, I’d lie in the recovery position and come around quickly then get ready and go to school, to college, to uni, to work.

When were you first diagnosed?

In February 2018 I collapsed at home, it didn’t feel like a usual collapse. The pain was different, it didn’t subside. I called 111 who asked me to go into A&E and not ignore it. A chest X-ray - 13 hours later, presented a full lung collapse. My lung was at the top of my shoulder like a wet, deflated balloon. ‘How are you talking?’, ‘How do you look so well?’ The doctors said as I sat in a chair. The oxygen tank and Morphine had now been connected and a hospital bed became available.

That was the beginning of the life changing events that were to unravel in the coming months and years.

Following a week in hospital on high oxygen, with talks of a chest drain. I was referred to a thoracic surgeon. It was advised to have preventative surgery to stop my lung collapsing further, which could be life threatening. I had two lung surgeries in quick succession as the first one failed and I’d had a significant collapse again. [Surgery counts 1 & 2]

On receipt of my pathology results, I was diagnosed with endometriosis in my diaphragm (Diaphragmatic endometriosis or the umbrella term, Thoracic endometriosis). My diaphragm had holes in it caused by the adhesions from the endometriosis and was causing my lung to collapse when air got through into my chest cavity each cycle.

My first pelvic endometriosis surgery the same year [Surgery count 3] revealed stage 4 endometriosis. It was found over every organ in the pelvic region and a new diagnosis of Adenomyosis. It was a long 6-hour surgery. I was told to take Tramadol, Morphine, Gabapentin, anti-sickness and stomach lining tablets, varying hormones, chemo injections causing chemical menopause to stop the aggressive growth of the endometriosis.

I went to see a nutritionist to do what I could to help slow the re-growth of endometriosis. She was recommended by my consultant and was a specialist in this area. I was told to follow an anti-inflammatory diet and to stop coffee, tea, alcohol, dairy, gluten, and processed foods. The clean eating pursued. It was meant to reduce the growth and the inflammation and make me feel “better”.

Exercise has always been a huge part of my life. I went from HIIT training daily before my lung collapse to a short walk to try to build up my lung capacity afterwards. Following my first 3 surgeries, I started to see a PT once a week for 30mins at first then built up gradually to 60mins. I managed my first 30” box jump, and it felt amazing! I was back at work in the Autumn, launching a new proposition and even winning a GOC award. It felt great to be back to ‘’normal’’.

Six months later, I’d been back at work and worked my way up to 4 full time days. I decided to get some help for the severe shoulder, chest pain and breathing issues that had been ongoing since my first surgery. It now makes sense that the endometriosis was disturbed by the lung surgeries but not removed and was continuing to cause severe pain and symptoms. I went to see a specialist in Oxford, who had knowledge in this area for a consultation. Her team conducted a pelvic scan as soon as I arrived for my appointment that day. This was unexpected as I had made an appointment to speak about my thoracic pain.

The endometriosis in my pelvic area had come back aggressively within 7 months post-surgery. I then had a further complex surgery to remove all adhesions [Surgery count 4]. My organs were so much worse than before. Endometriosis sticks everything together (adhesions) like a spider's web, just much stronger. It had attacked my bladder and bowel too. The consultant explained to me that nothing I had done nutrition, fitness, relaxing etc. would have made a difference to the growth of the endometriosis as the cells are set up that way and were not right from birth.

As you can imagine 4 surgeries in a year was intense for me, all I wanted was to get back to my team and to work consistently. Another small lung collapse in the Winter floored me and I had to have a further small procedure with yet more General Anaesthetic [Count 5].

I was diagnosed with a Breathing Pattern Disorder in January 2020 and went to respiratory physio to work on re-learning how to breathe again from the diaphragm. My reduced lung capacity meant I was over breathing. I got back to work at the start of the pandemic. Things were ok I thought... I'd felt positive and was eager to get back. However, with my symptoms getting worse and dealing with major uncertainty about my breathing my lungs. I felt the lowest I ever had. I had got through so many surgeries with such grit, resolve and positivity but right now I felt so alone, lost, and unsure how to rebuild my life again.

The next specialist consultation was at the end of July 2020. The news I received was that the endometriosis had returned, and my bowel and bladder symptoms were back. They found a tumour in my womb that was not right, and they were keen to investigate. I was booked in for surgery a couple of weeks later [Count 6]. The results came back, and it was benign! I felt so relieved. The consultant did not want me to go under more surgery to remove it fully. Instead, I started on a new (to the UK) hormone that has been used in the past for cancer patients. I used it for a couple of months and had some awful side effects making it difficult to work. I have the upmost respect for those taking chemo tablets following treatment.

2020 was a bit of a blur for us all. I focused on work and getting a balance. I tried lots of different hormone options including the Mirena Coil, which caused severe migraines and anti-seizure medication to combat those provided even more side effects. I decided to come off all medication and hormone treatment. A fellow endometriosis warrior suggested I speak to a consultant that she had been treated by. She also has diaphragmatic endometriosis and could empathise with the levels of pain and breathing issues that were connected.

A lockdown Zoom call in February 2021 with the thoracic surgeon left me with a potential surgery date at the end of the month. The plan was to remove the endometriosis from my diaphragm (very risky, as it’s such a thin muscle), check my lung, liver etc. for any spread of the nodules and repair my diaphragm with a biological mesh. I didn’t feel like I had much choice with Covid spreading rapidly in the UK. The fact that I was in a high-risk group, meant that if I got Covid, it might not be a good news story.

Two weeks later, I had open surgery, [Count 7] I was in ICU for a week during the pandemic. I lost a lot of blood during surgery, and it was looking a bit touch and go at one point with discussions about blood transfusions. I didn’t find out until the nurse on the ward said it wasn’t looking good from the reports they were receiving from ICU. I couldn’t have any visitors for the duration I was in hospital.

When I got home the journey to recovery really began. I could hardly walk, I couldn’t twist, cough, lie down or sit up without a severe burning, ripping feeling. It was tough. It took a month or so to feel well enough to do short walks. I’d had several X-rays to check the success of the surgery, and all was looking ok. The pain was extreme in my torso and my right side would swell up. The first improvement was my shoulder pain and chest pain were completely gone! My breathing was better - not great but much better. I had swapped the old pains for the surgery recovery pains.

Recovery was slow, very slow. I went back to work after 9 weeks and was very soon back up to 4 full days again. I was determined not to lose more time. I had hydrotherapy, physio, respiratory physio, medications and nerve blocks. I tried meditation and resting. Nothing worked. It was only in December 2021 that I felt a real shift. I was still doing hydrotherapy. I’d got Omicron (I was so thankful I didn’t get the respiratory symptoms). I had a good long rest over Christmas and the New Year. 2022 I worked up to full time hours and have been consistently working for months. I had a slight set back with fluid on my lung in October, but I’m feeling much better and looking forward to continued symptom and pain improvements as I build up my core strength again.

My experiences over the past 4.5 years have pushed me even further than before in both mindset and growth. I have even more of a zest and passion for life. I work hard to advocate for chronic health and invisible illnesses both inside and outside of work. A group of us worked with the APPG to get NICE guidelines and care pathways improved for endometriosis, both pelvic and thoracic (extra pelvic). There can be a perception that people who have a long-term illness or have been through significant life changes, don’t want the same things they had pre-diagnosis. That’s not true. It just means they have perspective and a unique outlook on life.

A lot of illnesses are invisible, but your reaction to them is not. Let’s make more considerate choices in our exchanges with others. I have been open about my story but many others suffering with chronic illness continue in silence.

We can make people feel visible in a supportive way. People with invisible illnesses are not looking for pity. They need to feel safe, seen and be able to trust others with their differences.

I started my Instagram page to spread awareness and help others. If by going through so much you can’t help or change or do things to make a difference, to me it feels like a journey and a path wasted.

Little did I know how much comfort and strength my fellow endo warriors and non endo warriors would give me and how the kindness, compassion and how empathy of strangers (who are no longer strangers but some friends) would fuel me and my passion to help others more.

It’s been a long, tough journey but along the way I have learnt so much about me, mind, body and soul, medically, scientifically, emotionally and wholeheartedly and I still have so much more to share and give! I’ve learnt to accept where I am and why this is part of my journey and have always had that self belief that I’m capable and able, regardless of any labels or chronic pain and illness.

I hope in some way I can make you feel that too and help you on your own paths and journeys as they are all so different and unique, but we all share a common theme and end goal!