For the months of February, March, April and May I spent most of my time as an inpatient at Tauranga hospital. The care I received ranged from outstanding to below poor, inconsistency was the only thing that could be counted on! It was during these months that fear became a part of my journey.
Primarily was the fear of pain. Medical professionals often ask you to describe your pain on a scale of one to ten, prior to endometriosis I thought I had experienced 10 out of 10 pain when I had broken bones or had extensive dental surgery, getting a tattoo was about a 6 out of 10 on my pain scale. With the onset of endometriosis pain I experienced a whole new 10 out of 10 pain wise! It completely blew me away; I wondered how my body could experience so much pain without shutting down or dying. One incident stays vivid in my mind; it was a Wednesday afternoon on my 2nd or 3rd admission, the air-conditioning in the ward was undergoing repair and the heat was unbearable, Mum suggested we go outside for some fresh air so she got a wheelchair for me and we went to the hospital roof garden. We had only been up there for a few minutes when my abdominal pain began to get intense, in the short distance between the garden and my bed on the ward the pain became unbearable, it took my breath away and paralysed me; I had never experienced anything so painful. From this point onward I have only partial recall and rely on Mum’s recollection. The pain stayed at fever pitch for approximately four hours, because it was outside ‘normal’ hours there was no duty registrar on the ward and it took what seemed like forever to get a doctor up to prescribe IV pain relief. During this wait I blacked out several times and begged Mum to smother me with a pillow, I truly believed I could not survive that pain. Although it sounds dramatic now, at the time I genuinely wanted to die rather than endure any more pain. I was eventually given IV morphine on top of all the oral pain relief and it did very little to stem the pain. At some stage I was transferred into a private room, I imagine my screams were making the other patients quite uncomfortable. Finally after 4-5 hours of this pain it began to reduce, I was able to speak again and describe my new 10 out of 10 pain to the doctors. After this episode I was given a PCA morphine pump to use for 5 days – a week that on reflection is mostly a blur. Now that I had a new benchmark for pain I became very fearful that my pain would reach such high levels again. Every time I felt pain coming on I became very anxious to the point that my breathing became shallow and I had tight sharp pains in my chest.
Secondly was the fear of procedures. I have little or no fear of needles, I can watch a needle being put into my veins without feeling squeamish, and I don’t think it hurts very much either. The majority of IV lines that I had during my stay were a different story. It just so happened that I got more than my share of; trainees doctors learning to find veins, distracted phlebotomists and hurrying nurses, which resulted in drips tissuing, veins collapsing, infected entry sites and a whole lot of scar tissue. I require high levels of sedation and anaesthetic, often when I explained this I was treated as though I had ulterior motives and enjoyed the drugs or some such thing. During my first procedure under sedation I came around after only a few minutes and needed extra sedation, even after the extra dose I still came around before the procedure was finished. Luckily that procedure involved minimal discomfort so it wasn’t to alarming to be conscious for some of it. However when it came to my next procedure which was very invasive I wanted to be sure that I was completely sedated the whole time. Initially I asked about anaesthetic but was advised that it could not be done under anaesthetic at Tauranga hospital, only at Waikato hospital; however I was assured that I would experience to pain or discomfort. On admission to the day-stay surgery unit I explained my concerns to the nurse and she made a note of them on my chart. After being wheeled into the theatre I also explained my fears to the nurse who would be assisting my procedure and to the doctor who was actually doing the procedure. I went so far as to ask them to read my previous procedure notes and look at the specific doses so that they knew how much more I would need. I also requested that if I came around during the procedure I would like them to stop, I can still remember saying to the doctor “I am in so much pain everyday as it is that I really don’t want to add to that in any way”. It was my understanding at this point that the team was very clear on my needs and what I wanted should the sedation fail. Just twenty minutes into the procedure I began to come around, I was awake and I could speak and I begged them to stop, the pain was unbearable, I was crying and screaming. The doctor did not stop, instead I was held down as he continued with the procedure. At one point I arched my neck and looked into the nurse’s eyes and said “get your fucking hands off me” I was so angry but did not have the full body strength to fight them off, not to mention I was in a huge amount of pain. I didn’t know this at the time but mum could hear my distress, I was wheeled out to the recovery area curled in the foetal position sobbing, she could see straight away that I was very upset. All of the other patients in recovery were still completely out to it, yet I was able to stand up, walk to my clothes and dress myself, evidence that I was very much conscious! I was ready to walk right out of there and never return but Mum insisted that we see the doctor and get an explanation. The doctor who actually did the procedure was conveniently unavailable so another doctor was sent to see us. I angrily explained what had just happened and Mum who was equally as upset backed me up. The doctor couldn’t tell us why I hadn’t been listened to or why the doctor didn’t stop, all he could offer was an apology stating that the doctor had clearly failed me and that it was a medical misadventure. Afterwards I considered pursuing the matter further, but I just didn’t have the fight left in me and I knew nothing I did was going to change what had already happened. Thus my fear of procedures was confirmed. In addition to this I went for a CT scan, a common procedure with low risks. I forgot to mention earlier that anything you have done in hospital comes with a pamphlet containing basic information about the procedure and its risk and benefits. A CT scan has a 1 out of 500,000 chance of adverse affects according to the pamphlets. I had never had a CT before so I had a good read through the pamphlet as the orderly wheeled me through the maze of corridors and I felt comfortable that it would go smoothly. The imaging department was undergoing extensive upgrades at the time so it was a bit chaotic down there but the staff were very friendly. The nurse reread the pamphlet to me and explained that when the contrast was injected into me I would feel warm sensations and the urge to urinate. As soon as it was injected I felt the sensations exactly as she had described, however instead of easing off after a few minutes the warm sensation began to burn, my throat felt tight and it got hard to breathe, my body broke out in large raised welts and I began to cough. When the nurse at my side figured out something wasn’t right the room sprang into a frenzy, 3 or 4 staff members rushed in, I heard one of the staff shout “oh fuck” as they realised that the emergency trolley wasn’t in the room , it had been shifted during the renovations. My body was having an allergic reaction and I was in anaphylactic shock. I can’t recall the exact order but I was given two injections (one of them was from a HUGE metal syringe like you see in horror movies), inhalers, oxygen and cream for my skin, and it was all under control quite quickly. I think the staff got just as much of a fright as I did; none of them had ever seen such a sudden reaction occur during a CT scan before so it was a first experience all round! As you are probably beginning to understand, my faith in medical procedures was rapidly depleting as my fear increased.
My third and perhaps worse fear was for my own sanity. Endometriosis can be a difficult disease to diagnose, you have to actually have a laparoscopic surgery and physically see it to diagnose it. My symptoms did not fit with ‘typical’ endometriosis symptoms which also added to the confusion. I had had every type of test you can imagine, scopes in every orifice, scans, x-rays and ultrasounds, even a rare test in the nuclear medicine department that I had to travel to another hospital for, and apart from a few small incidental findings all of the tests were clear. I could tell that some of the nurses thought I was exaggerating the pain, they didn’t speak it out loud but it was written all over their faces. The first instance I had where somebody questioned my pain outright was actually another patient. Just to be clear this lady was a right bitch, she was rude to the staff, made it obvious that she was an upper class woman with considerable wealth, who for circumstances beyond her control was begrudgingly using the public health service. In a rare break from her constant self talk she asked me why I was in the hospital, I gave her a brief rundown concluding that the cause of my pain was still unknown. She came straight out and said that it must be psychosomatic and the doctors should seriously consider that I was making the whole thing up. I was so shocked I had nothing to retort, I wanted to cry but I daren’t give her the satisfaction. As time wore on and the weeks in hospital turned into months and I was still experiencing this ‘mystery’ pain my mental health began to come into question more. On top of the not so subtle inferences from the nurses the doctors also made suggestions and went so far as to ask me whether I was having problems in other areas of my life that were causing me to seek attention. To begin with I completely rejected the idea and curtly informed them that the only problem was them not being able to find the cause of the pain. It became harder to withstand the allegations and I began to question myself. I knew I was feeling the pain, but I began to second guess the intensity. I doubted myself and felt anxious all of the time, I had questions running through my mind; was I mentally ill? and would I even know it if I was? How could I convince everyone that what I felt was real? Was it real? I questioned everything and it was really getting to me. Had it not been for Mum’s unwavering support and belief I’m not sure I could have come through it.
Fear had now become another complex part of the journey, one that I am still working to overcome. For a long time I felt bitter about much of the treatment that caused my fears to develop and become real, I have since managed to let go of a lot of that. However a by-product of this fear that I still carry with me is the need for reassurance, even though I am an adult in my own right I feel scared to make decisions about my health and am constantly asking my Mum for her advice and opinions. When I experience pain I often still feel the need to explain or qualify it. These are issues that I hope I will overcome in the near future.
