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A quick little re-cap for you all to start. In December 2023 I was diagnosed with Deep Complex Endometriosis, Endometrioma’s, an Isthmocele and most likely Adenomyosis. I was referred to an incredible specialist in Brisbane, Dr Albert Jung who just so happened to be a cyclist. Our first meeting was via Zoom. We found him to be kind, caring, patient, sympathetic, thorough and openly explained all options to us. He actually gave a crap and didn’t brush off my symptoms or concerns which you quite often hear when it comes to Endo.
Pic: Feeling seen and believed by your care providers is critical as Tara experienced during her search for answers.
After great consideration we decided that the best thing for us to do in the way of improving my quality of life and our fertility chances was to go for the surgery in Brisbane. I was booked in for his next available surgery date in February. Whilst this was only a 2month wait, it seemed like a lifetime. The week before surgery, 2024 decided to throw us a curve ball (because we hadn’t had enough of those in 2023 haha) and my fiancee Jack got Covid. Jack was my support person, he was coming to be my rock and to essentially wait on me hand and foot. Jack getting Covid meant he could no longer come.
We looked at changing his flight to my Mum but were told that there weren’t any seats available on my flight and that she would have to get the next flight. I couldn’t comprehend this as Jack not coming now should mean that there is a free seat but apparently the computer systems don’t register that and show no free seats. Mum being on the next flight meant that I wouldn’t have a support person at my pre-op appointment. I called Dr Jung in tears because I didn’t know what to do and he again patiently talked us through all options along with the risks that now followed from being around someone with Covid. It was decided my surgery would be postponed until April.
Pic: Before endo, Tara was super competitive over the 70.3 distance and on the local criterium scene.
Whilst there was so many emotions around the delay, it also meant we could still go on our yearly camping trip at Easter with our friends. This is something that we all look forward to each year. The camping trip threw us another curve ball as my daughter Chelsea split the top of her foot open while playing. It was 3pm in the afternoon and we were 5 hours away from the nearest hospital so totally not ideal. She ended up having surgery for a partially severed EHL tendon on Easter Monday. Two weeks before my scheduled surgery. Thankfully kids can be absolute troopers and she didn’t let it slow her down which meant I could still fly down for my surgery.
Pic: Tara had partner Jack as her support person for her complex endo surgery, which took place in a different city to where they live.
When we first spoke with Dr Jung he advised that even though my excision surgery would be done by key hole, it is still major surgery so it was recommended that we stay down there for a week. I told Jack that if I’m going to be couch bound for 5 days then I wanted to stay somewhere with a view so we booked a beautiful 1 bedroom Air BnB in South Brisbane on the 23rd floor and walking distance to Coles, coffee shops, restaurants and the hospital. The surgery went according to plan but I was so sick coming out of it that they had to give me anti-nauseous meds which took 3 doses before they actually started to work. With each dose the pain in my arm where the canula was inserted was excruciating. It didn’t help that I kept passing out from the anesthesia, sometimes with food in my mouth.
Pic. Tara in recovery after her complex endo surgery.
The next day I was allowed to go back to our Air BnB and the day after that I managed a short stroll for coffee and it was so good to be outside. Once back inside I started to feel dizzy again. I at first put this down to the heavy pain meds so stopped taking those and was just taking Panadol and Nurofen. This wasn’t enough though as my back felt like I had been hit by a truck. The dizziness didn’t go away either. We ended up at the Medicare Emergency Care clinic where that checked my obs and my incisions and deemed it to be as a result of the surgery and to continue taking the heavy pain meds and to take the damn anti-nausea tablets at least just to get me home the next day.
After a few days at home I booked in to the physio as my back wasn’t getting any better. I ended up having 3 weeks off work. I slowly eased back into going for walks and each walk I went a little further. Chelsea even joined me for some with her moonboot on and scooter. Eventually I decided I needed a goal and signed up for Copperlode Cup Run Challenge in August. It was meant to be around 16km from the bottom to the top but thanks to Cyclone Jasper in December 2023 sections of the road were missing from landslides. It was then changed to an up and back event with 5km, 14km and 19km options. I chose the 14km. I trained for this with two of my very good training friends. There were plenty of early mornings in the dark up on the hill. The week of the event I was given clearance to run again so my plan was to walk the hills and jog the flats. Safe to say the plan went out the windows and I ran as much as I could up and the whole way down. Can say I did slightly miss the feeling of not being able to sit down because your legs were fried haha.
Pic: Tara competing in her first event back from complex endo surgery.
In September I signed back up with my long term triathlon coach. I needed another goal which was going to be Cairns 70.3 (curve ball number 3 strikes with an extensive partial tear of the ankle) and really just missed training with people. We have been steadily building my swim, bike and run back up but it hasn’t been easy as some of my symptoms have been creeping back in, in the way of cramps, lower back pain and fatigue. Each day is different and I do what I can on the day. They are no where near as bad as they were but they still stop me in my tracks from time to time and my heat packs are still my best friends. Unfortunately as noted above the ankle injury hasn’t helped. 4 months on and I still can’t run more than 4kms without it waking me up at night and not being able to walk the next morning.
Pic: Life for Tara after endometriosis surgery is up and down, and has been full of curve-balle.
So whilst Cairns 70.3 is off the cards this year, the focus has been shifted to swimming and Crit/Road bike racing with the aim to get fitter and stronger. If all goes to plan (yeah I’ve probably just jinxed it) then I’ll look at Hawaii 70.3 in May 2026. I’ve been put back on the pill to hopefully help manage the endo symptoms but it’s only early days yet. We are hoping that this slows the endo coming back so I can avoid further surgery. Whilst being back on the pill is the last thing I want, I’ll take it over the sporadic symptoms if it works.
Pic: Tara is concentrating on getting stronger on the bike post endo surgery and loves showing newbie crit racers the ropes!
When I mention to people about my symptoms coming back they quite often say ‘I thought surgery was meant to fix that?’ Unfortunately that isn’t always the case. In my case, my symptoms are better than they were and I have quality of life back but for others their symptoms can be worse after surgery.
It is very clear that there is still so much we don’t know about this chronic disease and that more funding needs to go in to it.
A cure, an ACTUAL cure NEEDS to be found!
x Tara