This brings us up to date...

17th March 2023

MRI & Dynamic Ultrasound Results

Last year after a long recovery from my last lung/diaphragm surgery I enjoyed an incredible 7 months of balance, quality of life, social life, fun and getting back to work full time in August 2022. Things were looking up! I was able to do more, enjoy the summer and live my life as I used to pre diagnosis.

In September/October last year, I started to get severe pain again. Pain that stopped me in my tracks, caused me to lose days resting after overdoing it, made my torso swell on the right hand side (the side i'd had surgery previously) and impacted my breathing.

I had pleural effusion in October with fluid on my right lung, it caused a great deal of pain and discomfort. My doctor prescribed morphine patches to help me manage day to day, but they gave me a reaction and made me feel horrendous.

In October 2022 I went to see the thoracic consultant who had undertaken my biggest surgery to date. He suggested we book in for an MRI/dynamic ultrasound to see what my (biological mesh repaired) diaphragm was doing when i'm breathing, when I move etc. I got my MRI/Ultrasound appointment for January 2023. I had Covid in December and the constant coughing and low oxygen had left me in a further state of pain, a pain I hoped would go away with time.

Work was busy, I worked through the Christmas period and January was non stop. I found myself focusing on work and listening less and less to my body, working through the pain and suffering in the evenings and weekends, when I had no other option but to rest. My social life was non existent, I didn't see my family and friends. I just kept going working, working late, trying to get my steps in, sleep, then get up and start again. At the time, when you're in it, you really don't realise how bad it is, how much you ignore the screams of your body to slow down, to rest, to heal.

The results came back in early February and explained a lot of the pain I was experiencing. My lung function test left me nearly fainting in the chamber. My report said 'Good effort made' that made me chuckle, like a school report. There was reduced lung function, however, the consultant explained after 3 lung surgeries and a diaphragm plication and repair that it was where he would expect it to be.

My right side torso had lost 50% muscle mass and my core, abdominal muscles were weakened, not supporting the wrap around muscles and centre of my abdomen where I experience pain too. The recording of the MRI/Dynamic ultrasound showed the diaphragm section on the right side which had been repaired with a biological mesh in February 2021 dragging behind the left side on inhalation and exhalation. The report explained that the right side was moving by 1cm when breathing (hardly at all) compared to my 'healthy' left side that moved 4/5cm.

The consultant suggested we start with an intensive course of hydrotherapy to start to build my core strength with less pain and the heat to support movement. This would be accompanied by respiratory physio to support the diaphragm, my core muscles and my breathing. I am due to see him for a follow up in May at this point if the hydrotherapy and physio isn't working (fingers crossed it does - it has before), then we will look at front nerve blocks to support pain relief, potential cryotherapy treatment for the nerves and the consultant will take my case to the MDT team meeting to discuss other options.

The last and final suggestion was a pneumonectomy (removal of my right lung). The consultant explained that he has patients who live a very normal life, they work, exercise, socialise - already their lives seemed fuller than mine. It's something to consider, however endometriosis is always that unknown... this might not solve things for me if endometriosis is back on the diaphragm.

I continued with my life, work, pain, awaiting my follow up letter so that I could get a referral for physio. This took a few weeks due to resource issues with support staff. I was working long hours due to the project I was on and our neighbours were having building work done, so I was unable to work from home. I was in the office most days for weeks. I trialed staying at my parents to work but ended up not taking breaks and walking too much when i'd finished work to get my steps in (I was involved in a team walking challenge - which I loved but the pain was just getting worse and the fatigue alongside it). The commuting daily, starting early and staying late to avoid the builders noise took it's toll on my health.

I went to my doctor in despair and chased the consultant for my follow up letter so that I could move forward with physio to make a change. My doctor had started me on some nerve pain relief tablets back in January to help with the pain but they hadn't started working yet. He upped the dosage and suggested I take Oramorph for breakthrough pain. I was already wearing Lidocaine patches to work to get me through the long days.

I knew I had hit a wall with the fatigue and pain, the nerve pain relief symptoms only left me drained and unable to sleep, woozy, dizzy and nauseous. They were not helping with the pain. The doctor signed me off for a week initially and told me to rest. I feel like I slept for the whole week, I usually struggled to nap in the daytime, even after surgeries, but I was so drained. I couldn't do anything, I struggled to take a shower and although I bathed daily it was only when I could raise enough energy I'd do it, sometimes not until the evening. I knew it would make me feel better and a hot bath would help me with the pain. I left my hair and didn't wear any makeup. I didn't have the energy to do anything, even if it would make me feel better when I looked in the mirror. I was too exhausted to care.

I started back with my therapist to talk through the feelings of pain, the taking steps back, the taking time out of my life, my work, my friends, family and everything that goes when endometriosis takes over. It has really helped to talk through these things. To realise I need to work on my health and build on my strength and stamina for consistency with all of the above. That was a hard realisation, work is a huge part of my life and having to take time out to feel well, to have a reduced salary when things are more expensive, to take a step back when things are moving forwards, to pause when it's a special milestone birthday this year and I have so much to look forward to. It's been A LOT!

I had a physio consultation this week and the time i'll need to be commuting to the hospital and back, the daily walks, physio exercises and rest i'll need, made me realise i'd be unable to do this and work at the same time. At least initially. The physio suggested I allow at least 4 weeks to focus on hydrotherapy, respiratory physio and pacing and get to a consistent level before returning to work. I spoke to my doctor and he agreed. He has signed me off until mid April with a view for me to work with occupational health to get back to work.

It's not going to be easy, but I know it will be worth it.

LBH x