Hi there, I realised that I haven’t had the chance to tell you all the ins and outs of my recent hospitalisation which led to surgery, and I also wanted to give you all a much awaited update on my recovery at home.
In the months leading up to my birthday this year, I’d been under an extreme amount of stress from a variety pack of areas in my life. This was leading to regular flare ups however at this point I’d been able to manage the pain at home, but unfortunately the main stressors in my life remained consistent.
Slapping on a smile through the pain and medicating enough to leave the house was the only way I was able to actually attend my birthday dinner. I had a great time surrounded by friends and family but spent the following days in increasing amounts of pain.
As the warnings for “cyclone” Alfred increased I began getting anxious about the possibility that the pain could increase which would land me in the hospital during the storm. So as stubborn as I am, I decided to keep pushing through the pain and trying desperately to manage the flare up – Clearly I failed. On the 8th of March the pain got to a point where I knew I would be unable to manage the pain levels as it continued to increase. To avoid clogging up the hospital system I called 13 HEALTH and explained my situation, where they stressed that I needed to make my way to the hospital immediately.
I hurriedly packed up a bag with the essentials (I’ll do a separate post on what I bring when I go to hospital in case of a possible admission), and then made my way to the hospital. I was taken through fairly quickly and was given some pain relief to try to keep my pain at a reasonable level. Emphasis on the word “try”. My pain was still reaching solid 9’s out of 10.
I was visited by doctors, taken for MRI’s, Ultrasounds and a CT scan. They told me that I’d need to be admitted to the ward to continue treatment for the pain. I was told there was a lesion on my right ovary which was causing serious concerns as my hospitalisation and surgery in December 2024 was at that site.
I was lucky to have some incredible nurses in the Emergency Department and Short Stay but was also met with some pretty disappointing encounters with some of the nursing team there.
I always recommend opening a note on your phone to list the positive and negative experiences that you have in hospital so that you can provide feedback and hopefully make the next patients experience better. When you’re in such a vulnerable position it can be hard to advocate for yourself especially if you’re being treated as “less than” for having a severe pain flare. I’m currently in touch with the heads of the departments that I was in regarding my care due to this. Also making sure you fully understand Ryan’s Rule and know that you can always ask to speak to a social worker to help advocate for you makes a massive impact on your experience.
I spent my first night in the Short stay unit and then was taken to the Maternity Ward. I was lucky to have some incredible nurses who took the time to understand my situation and were even going out of their way to help manage my increasingly challenging pain levels on each shift. I spent nearly a week in this ward and had some of the best nurses I’ve ever had unfortunately some of the worst also decided to make an appearance. My pain got to such an unbearable level that my pain and gynaecology teams put me on a Ketamine infusion along with regular doses of morphine and other strong medications. Despite this, I was still being told that there was nothing wrong except this flare up and that I should be getting better.
(Fun fact: Gynaecology doesn’t have a specific ward in most hospitals so you’ll either be taken to maternity or the surgical ward and then visited by your medical team each day.)
I was spending my days practically curled up in the fetal position on my heating pad with multiple heat packs on my stomach. I was lucky to have family coming to spend time with me each day even though I was in and out of sleep due to the medications I was on. When I was lucid I was able to read through one of my new favourite series, Throne of Glass by Sarah J Maas, on my kindle which has been an absolute life saver.
A week into my admission I continued to advocate for myself and convinced the surgeons that it would be more beneficial to check and ensure nothing was wrong as the pain was almost exactly the same as my past admission. Except this time it was that horrific that I was constantly nauseous from how bad it felt. Over a decade of being in pelvic related pain I truly thought I’d experienced a true level 10… Until this visit where I found out truly how indescribable the pain was. I was borderline sedated and still could feel every micro movement like a knife was lodged in my stomach. I also was having dizzy spells which led to a very dramatic fall involving my head bouncing off of the sink and then smashing into the floor. I was lucky enough to get my very own neck brace from this!
Two days later I was moved to the surgical ward and my surgery was scheduled. The dosage for the Ketamine was revised and increased which helped me get nearly a full 4 hours of sleep (Monumental, I know). Unfortunately I had been in this ward multiple times and had some serious issues with some of the nurses there. This led to a few panic attacks peppered into my day which led to even more pain. Looking back I was so grateful that I continued to keep notes and names of nurses that were making a positive impact in my care and also specific ones outlining certain staff that truly should not be working with vulnerable people. I persevered and made it to surgery day without rage self discharging.
At the time I was told third hand that my surgery was successful and that it was not a major one. I was also told that I had multiple cysts, a bunch of endometriosis and adhesions all over. My surgeon said that it was a “difficult” surgery and told me that I was right to have advocated for myself. This must have been even further miscommunicated to my nursing team because I’d gone from being on a ketamine infusion with regular morphine to Panadol and Endone. It felt like I was stuck in a horrible remake of the game Telephone.
The sudden lack of pain medication was noticed immediately by my body which led to more incidents with staff where I was crying to the point of hyperventilating begging for them to get a doctor to come and review me each night after being regularly reviewed each day by the doctors and their teams. This mistake was not noticed by anyone other than myself until 3 days post surgery.
On the third day post operation I wasn’t seen until 5:30pm by a gynaecologist who had up until this point been involved on and off in my care. She practically berated me and said “Most people are out of here same day, I truly have no idea why you’re here”. I told her that I’d been told differently by my surgeon and pain team, she cited that she actually spoke to my surgeon who said that it was a “generic and easy” surgery, I asked her who she spoke to and wouldn’t you know it… It actually wasn’t my surgeon and was actually the specific surgeon who was supposed to be on but called in sick that day. I asked her to check again and she came back in a palpable mood, clearly over her own day but not taking into account patient needs.
I asked the nurse for some adequate pain relief while the gynaecologist was there and was offered Panadol and Ibuprofen. When I asked for something that would actually take some of the edge off of the burning pain in my stomach I was met with sarcasm and treated like I was some kind of “addict”. This nurse disgustingly tried to blatantly bribe me to “just take the medication” which was PRN and then I would get given the “drugs” I “wanted”… Which were also PRN.
(Fun fact: PRN means Pro Re Nata and essentially means “upon request”. This also means that it was borderline illegal to be told to take that medication without requesting it myself)
The gynaecologist continued to belittle and disparage my feelings and teamed up with the nurse, might I add that this is one of the worst nurses I’ve ever encountered and I’m going through the process of formally reporting her as a result of this incident.
I could tell that they were clearly trying to push me to discharge. I was at an emotional breaking point and decided that this was such a toxic and stressful environment which would only prolong my recovery if I remained in hospital. I felt like I had no other option but to discharge. The moment I agreed to discharge I was practically out of the hospital. I was given a handful of prescriptions which were incorrect, I raised this to the gynaecologist and cited Ryan’s Rule to get her to double check the medications, she spent all of one minute on the computer before handing them back to me without making any changes.
I decided that this situation wasn’t going to suddenly improve and was packed up just as a Wardie was coming up to help me bring my bags downstairs. I still needed a wheelchair to make it there as even walking to the bathroom was unbearable. She helped me get into the car safely and also helped with my bags which was such a stark kindness after the incident I’d just been through upstairs. I did make sure I noted how much I appreciated the care that this person took in my notes to revisit when I was comfortable at home.
Once home, my family helped get me into the house and safely into bed. I was also thoroughly checked over by my cat George who stayed glued to my side for the first few days. The disability aids from past surgeries were ready to go and set up in each room of the house for me.
(Side note: My Mother and her friend essentially do Storage Wars in Australia where they buy units and then repair and resell the items they find inside. Luckily before my last surgery they had a unit which was filled with disability aids including a commode and manual handle to support getting in an out of bed. I have since renamed this the “Triangle of Travel” because it makes getting in and out of bed easier and has been through multiple surgeries with me now.)
My Mother has been an absolute saint throughout my at home recovery, even sleeping in the same bed as me for the first couple of weeks to ensure I had support through the night when I needed it most.
I’m lucky to have a best friend as my mother, I know as a twenty six year old it may not be the “coolest” thing to say but I cannot deny how awe inspiring she is. She’s been there for me through each operation, even staying in hospital one night with me when the nursing team began targeting me and denying me prescribed medications.
It’s been three weeks since my surgery now and I’m still having some post surgical pain which I’m managing with my GP. I’ve also had a great support network and been blessed to have such an incredible family. I’m nearly able to go up and down the four steps to the kitchen which means I’ll be back in action hopefully this coming week.
Thankyou for everyone that is following along my journey to recovery. I’m excited to share more of my life through this blog and am grateful for all of the messages of support that I’ve been receiving.
XOXO Chelsea
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