Background on my Chronic Pain
I’ve realised if I’m going to offer any true support to anyone with Endo out there, I really need to be open and honest about the issues surrounding my health.
I also need to find something productive to do today after I’ve spent almost all day resting on the bed (yes, even with a 2 year old, it can be achieved with practise and imagination). I feel terribly guilty that out of the 3 days my 5 year old attended preschool this week, leaving me with time to do my writing, I’ve done none this week, again. I also have had to call on a local lovely who has picked up my daughter 3 times this week. This was a result of my failing to be there at the gate for my daughter, again.
So, how did I end up lying in bed with hot packs unable to walk?
Well, I was diagnosed with Endometriosis (Endo) when I was about 19. Yet my problems had been going on from my first period. They were heavy and painful, and from about 16 onwards I would be regularly collapsing at school, unable to walk or stand once they hit. I would somehow summon the strength to get to the office to call my Mum. Who, as a busy working mum, would have to send friends in to give me a lift home. It would be hard being home by myself, as once I put myself to bed I wouldn’t be able to get up again.
Mum and I have a theory that a lot of my problems stem from my Appendix rupturing when I was 14. I was too quiet about the pain even then. I was very shy and it was my first hospital stay. I had complained and complained about the pain, but when the nurses and doctors tell you ‘I know, but we can’t do anything about it’ (which kinda feels like – we don’t really believe you, and we have real sick patients to deal with, stop bothering us). What are we going to do? Keep buzzing them? Scream and cry when they say there is nothing they can do? Of course not. You just deal with it. Even with an Appendix rupturing.
I woke up from that surgery to the look that would become standard on my surgeon’s face – surprise. That something was actually wrong. Surprise that I was really in pain. Definitely not an apology, but some kind of amazement at how extensive the damage was.
When I was 19, and enjoying the camaraderie of my first part time job and the independence it allowed (this would be short lived, and would be one of the first of many jobs I would either be forced out of or made to quit due to my poor health), I got struck down with severe stomach pain. This would be the first of approximately 4 Adhesion surgeries I’ve had to endure (I say approximately because I have to block out some of the details. To remember 4 rather than 6 is less depressing and confronting…it’s a coping mechanism. Does anyone else do this?).
From this first Adhesion surgery I was diagnosed with extensive Endometriosis, from a well respected Sydney surgeon. He wouldn’t last, as I would leap frog to another 4 surgeons over the next dozen years as they went from serious and concerned doctor to exasperated and ready to hand me over to the pain clinic as there was nothing else that could be done for me.
My surgeries fell into a pattern. Every two years I would need a surgery. It would take about 6 months of convincing the doctors of the severity of my pain and explaining to them my mobility issues due to the pain. I would finally get a surgery scheduled, but it would still be for weeks away (I would think how am I going to last until then?, and I would have no pain relief or support offered. I also never thought to just go to A&El They told me to wait, so I did (remembering that they still weren’t convinced I had a surgical issue, so I wasn’t sure enough to demand more either). Then, there would be much more Endo found in the surgery than the doctors would expect. This would lead them to prescribe proper pain relief and support as I recovered. Until, about 18 months later the pain would return, and depending if they had already done 1 or 2 previous surgeries on me (2 was the limit)…I might need to find a new surgeon. Surprisingly, my Endo grew back very quickly, and ravaged my body very thoroughly across many different areas each time.
During this time, I was involved in a freak bus accident after one of my Year 11 exams. A semi smashed into the back of it while we were at a bus stop, sending my body into the seat in front, and my neck thrashing wildly.
This was the first of another two more Motor Vehicle Accidents in the next 10 years. Preventing my body proper time to heal, and adding more inflammation to a body dealing with the impact of Ankylosing spondylitis (AS), a form of Rheumatoid Arthritis (diagnosed with at 25).
I’ve learnt many things about my body over the past 15 years. I’ve learnt that I have a very sensitive system, that often requires a week in bed for a day surgery procedure. But writing sensitive now, I’m realising that doctors have given it that word. But wouldn’t any body that had to cope with more that 12 surgeries in 15 years be sensitive? Isn’t that another element of ‘Gender Bias’. Calling a woman’s body sensitive when it’s actually sustained and recovered from a heck of a lot. Is it really sensitive? I’ve gone on to have 4 pregnancies (our first was sadly lost in the early weeks). I’ve had 2 Post Partum Haemorrhages. I’ve had 4 D and Cs.
I’ve had to fight fight fight fight to be heard. I know when my body is in peril. I know when the Endo has returned, and I need surgery if I have any chance of resuming a type of life again. I need to argue to get it, but then I do get some relief, for 12 months at least. I know my body can only do so much, than I need to stop. Absolutely stop and not move much. I also know that it’s done some marvellous things for me.
But would I really call it sensitive after writing this list of woes? Would you?