I’ve sat down to my computer a few times in the past few weeks and written a few different things here and there but never been able or ready to fully commit and finish a blog and for that I apologise. I was prompted by my surgeon in our post-op telephone conference this morning to ensure that I share my story as much as possible as although he has only performed somewhat similar surgery on a handful of women, he, as I, believe there are many other women suffering the same symptoms and are yet to come to a diagnosis or know how to get help. Thankfully I have been able to reach out and speak to a few in just this week alone again and as ever I try to see this as one of the few positives to rise from this absolutely shit situation. I’m going to keep it pretty factual and light and hope that in time I will be able to write some more about the emotional toll this has played out on me and the repercussions of this situation and others actions have had on my life recently.
I went to Sydney on the Sunday 5th March the night before surgery with my mum, we enjoyed Aladdin the Musical at Capitol Theatre (I’m still trying to get Prince Ali Ababwa out of my head and Mum if you’re reading this sucked in, it’s in your head again) to help me forget for 2 hours that I had to go back to the apartment to enjoy the absolute refreshing and beautiful lemon taste of Picoprep the bowel preparation of champions, used to clear out everything you digested since you were in the womb or so it feels like.
The surgeons do this so they have easier access to everything in your stomach without excess risk of perforating your bowel or intestines. Awful at the time but in the morning, I think I saw the first sight of abs in a few years, however 10/10 do not recommend as your new #skinnytea option. I was first up on the list for the morning as the team had no idea how long they would be in there for, so arrival time was 6:30 at Royal Prince Alfred Hospital, it was the first time I’d been up that early in a while and I think it helped that I was still half asleep to calm the nerves. By 8am I was prepped, gowned said goodbye to mum, not without first ensuring “I Wanna Dance with Somebody” by Whitney Houston was 100% my funeral song and that under no circumstances was I to have a shitty lame Facebook status to inform people of my death (super morbid, but just covering the essential basics really)
The anesthesiologist and his sidekick came in, talked about how much pain etc ill be in afterwards with worst case scenarios etc, tried 3 times to get the larger canular into my shitty veins and then ended up putting a smaller one in and attempting again while was under, and for that my arms and I are grateful. As there were 3 surgeons going to be present and then their sidekicks it was a party in there and although I’m glad I was asleep at the time I’m sorry to have missed it, my surgery was performed by Professor Cooper Gynaecologist, who oversaw the excision of each location, as this is the gold standard for Endometriosis and the fight in stopping it growing back, please always ask your specialist if they are going to diathermy or (burn) the Endo or remove it completely as studies have shown that burning it can actually make it grow back faster. Professor Cooper found large amount of Endo (about the circumference of a tennis ball) on my pouch of douglas.. yes that’s a thing, its located here:
Large amounts of Endo in this area cause: digestive and bowel problems, pain during sex, pain in the bladder and during/after urination, frequent urination and burning sensations, yeah the girls….
The white and black spots and film are the Endometriosis in this area.
After further inspection there was a few more spots on my bladder and bowel, but thankfully nothing penetrating. The investigation then lead to my diaphragm, liver and kidneys where extensive amounts were found and removed by Dr James Gallagher an upper GI/General Surgeon.
Views of the diaphragm, kidney and liver.
As per the middle photo, 8cm of my diaphragm was removed (this is the lining between stomach and chest cavity) and you can see my lung peeking away there, just saying hey. Because of how much was removed instead of a thorocoscopy a thorocatomy was performed where a 10 cm incision is made, my ribs were cracked open and right lung deflated to allow entry into the chest cavity for Dr Matthew Bayfield a Cardiothoracic surgeon to go in and pack the area with a type of gauze and plastic. I am now a bionic woman 😉 at the time he also went through the bronchial pipes of my lungs through my mouth and checked for any involvement of inside the lungs, which there was none of thankfully.
I woke up after 4 hours in recovery feeling very sore and sorry for myself, to be honest its the first time I’ve remembered actually waking up in pain from surgery, as usually they have you so medicated you’re groggy but okay, but this time because I was having to move my lung to breathe the pain was instant. I had 8 incisions in total, a chest drain inserted into the incision that was just under my right boob and a nerve blocker at top of my right shoulder just above the large incision, which funny story, Mum and I didn’t know about until we took the bandage off at home 5 days later… in the haze of everything we didn’t think I had been opened up largely at the back and my stomach incisions were checked everyday but not the back.
Post Op in Recovery, Day Two with Chest Drain still in, Day 6 Thorocotomy Scar.
I was originally booked to stay in the gynae ward, but because of the extent of the surgery and the chest drain I had to stay in the cardio ward. They were unable to find me a bed for almost 12 hours and so I waited from 11:45am – 11:30pm in recovery, which I can say hands down was the worst experience in a hospital in my life. Through no fault of the nurses who were amazing as (almost) always but by being in such a large open area in so much pain with people that, to be quite frank didn’t wake up from surgery with much of their dignity left in tact. Due to the fluid in my lungs and a small pneumothorax I had to have an X-Ray straight away in the recovery area which was excruciating to say the least as I had to move to suit them with the right side of my body numb but also in so much pain making it even harder to navigate.
Because of the amount of fluid in my lungs it was really hard to take a deeper breathe without coughing or wheezing or generally sounding like this…
and to cough, fuck, I can’t even explain. But ironically to breathe deeper and to cough helped clear the fluid and to ease the pain afterwards. It also stops you from getting pneumonia or infection so that is also a plus?
On day two I had the chest drain removed, it was less painful than I had anticipated and definitely not as bad as the stomach drain removal of 16′. I also had my PCA medicine swapped from fentanyl to hypermorphone, which I was informed is 5x stronger than morphine, ya not bloody wrong, holy moly. I spent the next day or so in and out of sleep and even remember seeing the golden snapchat filter butterflies flying around the room at one point. Each day there were things I noticed I could do that I couldn’t do the day before, day two was getting up, day three was showering, day four was being able to move without it feeling like my chest was falling apart, day five I could finally put my hand to my head, day six my shoulder was up in the air and so on.
My progress almost two weeks later is so much further ahead than expected. Do not get me wrong, my chest and lung still hurts, I can’t sleep on the right side which is KILLING this stomach sleeper.. and I still can’t lift, pull or hold anything too heavy or wear a bra, so basically I look like a boy thats been hacked at but I feel SO much better, the Endo pain has pretty much completely gone, I can’t quite believe it, and I’m hoping it lasts a LONG time this time. I feel so grateful that I was able to have this surgery, quite literally, thankyou to my mum for paying as it cost alot more than my private health insurance covered (pays to be the best doctors in your field) but it was completely worth it, every setback, every consultation, every drive down to Sydney. I feel like in the past two weeks I have got a quality of life back that I haven’t had in the past year and while emotionally I’m not doing so great (save that for another blog) physically I feel fantastic (minus the surgery pain and nerve pain from having my ribs cracked open)
If you are experiencing symptoms of shoulder, chest, upper stomach pain, breathlessness that starts off by coming around 1 week prior to your period or a few days during menses. GET IT CHECKED OUT!!! I cannot stress this enough, the pain will only get worse and it may become completely debilitating like it did for me. Some instances of hormonal treatments don’t work for everyone, aka the whole 6 months of Zoladex that stopped only one period and made me a crazy person. Surgery can be the only option and although it is “rare” and doesn’t work for everyone, it can also be the best thing that you can do for yourself.
I also want to say thankyou so so so much to everyone who was there for me and supported me during this time and sent such beautiful messages for surgery. You have no idea how much they have meant to me and have got me through some really dark times when people I expected to be there decided not to be.
Wishing you health and happiness always,