Let’s Chat with Morgan
By Morgan Smith
I’m Morgan and I’m a Registered Nurse who works in operating theatres in QLD, Australia and unfortunately I have Endometriosis… My story however is a bit different in the fact that the endo didn’t end up being my biggest issue!
Fortunately my journey to being diagnosed with endo was smoother than for most! In 2020 (19 years old, turning 20 in December that year) I started bleeding during/after sex, paired with some pretty intense pain down there! Other than that I’d just had some pretty painful periods growing up and some pretty heavy bleeding,but nothing I was ever concerned about.
After a while of thinking not much of the “postcoital bleeding”, I decided to go to my GP to get checked. Got a Pap Smear and a referral to a Gynaecologist. Fast forward a few weeks; I’d moved house to a town an hour away for a graduate nursing job. Before I started the job, I went to see the Gynaecologist. He said the Pap Smear didn’t quite get a good enough sample the first time around so we did another as well as a colposcopy. Whilst examining me, he explained that it looked like I had a cervical ectropion (where the cells inside your cervix are on the outside as well) which would explain the bleeding during sex and the pain. The Gynaecologist recommended a LLETZ procedure (essentially where they burn the cells on the outside of your cervix). He also mentioned the choice of a laparoscopy due to my family history of gynaecological problems including endo and adeno… I had multiple of the indicating symptoms and the family history to indicate that I could have endo so I decided that I might as well do it whilst I was anaesthetised anyway!
Starting my new job less than two weeks later, I was very lucky to slip into a theatre list the following Monday (this was a Thursday). Not much time for preparation but I was about to start a full time graduate position as a nurse because I’d just finished uni, and it was either that week or wait a fair while to build up some leave. Anyway, I had the lap and the LLETZ as well as a mirena inserted. The surgeon found endo pretty wide spread through my abdomen, including on my bowel. He burnt and resected what he could and that was that! I had endo, but I was very fortunate in the way of my symptoms being very mild.
Went home the next day, to get the healing process going so I could start my job the following week. Thursday night comes along and I collapsed at home in excruciating pain this was followed by a trip via ambulance to ED with plenty of drugs and fluids, a few vomits and almost fainting when trying to stand, a CT and bloods and not being able to get to the toilet without a wheelchair. BP was no higher than 100 with multiple bags of fluids so I was in ED overnight until my surgeon saw me the next morning. Was it the mirena or an infection? No one was sure at this point so my surgeon removed the mirena and took some swabs to check for an infection. 18hrs in ED and finally I was admitted to the ward. More fluids and IV antibiotics, they said there doesn’t seem to be anything abnormal (more than it would be a few days after surgery that is) with my scans and bloods and I was improving slowly with the fluids and antibiotics. So they sent me home with lots of antibiotics and pain relief, I wasn’t overly hungry at this point either because all the drugs were making me feel sick. Got discharged on the Saturday and by Sunday night I had severe diarrhoea and had started vomiting. I couldn’t keep even water down, any time I sat up or tried to stand I would vomit pure bile and stomach acid. I was having hot and cold flushes, was barely weeing but was losing so much fluid through vomit and diarrhoea but couldn’t keep anything down no matter how hard I tried. I was getting worse and worse overnight, the next morning I rang my surgeon to let him know what was going on.
He was able to confirm for me that the pathology showed endometriosis. He said to stop all medications (which I had done the night before) and to just see how I go that day. I continued to get weaker and weaker, I struggled to do anything, but was still having post-op ‘gas pain’. Not eating or drinking, vomiting minimum 500ml every time I moved, I felt myself fading away. I genuinely thought that I didn’t know how much longer I would last if it continued. At 20 years old my mum had to get my dad to come home from work to be with me whilst she worked because I was so unwell. The next day I rang the surgeon again and he said come to ED again. More scans, bloods, fluids, antibiotics and pain relief. A general surgeon was consulted and decided to take me back to theatre to have a look and clean out what they thought was a collection of blood in my belly. Fast forward a few hours and I go into surgery, before I know it I’m waking up in ICU with immense amounts of pain and being very confused followed by being covered by a drape to having a PICC line inserted. My surgery went for 5 hours and I ended up having a midline laparotomy with an omentum patch and oversew of a bowel perforation. A small hole was found 5 cm above the opening of my rectum. I was septic. I woke up with a urinary catheter, a rectal catheter, an abdominal drain, an arterial line, a nasogastric tube as well as a PCA pump. I had the PICC line put in for my antibiotics and TPN. I was in ICU for a few nights, followed by another week and a half in the ward.
I had immense pain at times, I struggled when I had to start slowly eating again because I hadn’t eaten properly in weeks so it was completely foreign to me. I had to sit down to shower, and for a long time struggled to walk from my hospital bed to the door and back. After lots of physio, removing every catheter and tube out of my body, and many many tears I was discharged from hospital. I wasn’t able to start my job for a few months, I wasn’t able to drive, and I couldn’t look after myself properly on my own weeks. I had rent to pay and a car loan to pay, but no income but I was incredibly lucky to have wonderful roommates and parents who helped me out.
Just over two years on and no one really knows how it happened, we can only guess and that’s incredibly frustrating considering how much my life has changed. Financially I’m still recovering, and the trauma will never leave me. I’ve had multiple surgeries since, all of them I require pre-medication for the severe anxiety I get. One of those surgeries was a follow up from the last one with a different gynaecologist to try and solve some of my now chronic pain that I have in my abdomen following my laparotomy. Plenty of adhesions, but all was good after that surgery. So in the long run, I really wish that I hadn’t have decided to have that laparoscopy because in the end, my endometriosis diagnosis wasn’t what changed my life.
But I am unbelievably grateful for each day that I get, now that I have genuinely felt the fear of death at the mere age of 20. It has also however made me a better and much more compassionate nurse. People can be very unwell and scared and I’ve lived that. I know exactly how it feels.
So whilst my diagnosis of endo came pretty quickly, all that to follow wasn’t so easy. I’m so lucky I had amazing friends and family around me at the time, and an amazing mum who advocated for me when I couldn’t. So moral of the story is, if you have a gut feeling that something is wrong, pursue that feeling because it very well could change your outcome and/or your life.
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