In my previous post, I wrote about how an irrational fear had caused me to accidentally sacrifice something that eventually turned out to be incredibly pleasurable. The issue I’m dealing with now is what to do when the danger is real and the apprehension is logical.
As I write this, I can feel the flood defences being tested as the inevitable internal Red Sea prepares to break through the wall. Putting the actual symptoms of Endometriosis to one side, this is still going to be a huge issue for me this week. On the one hand, I’m hoping it will stick to the actual due date, granting me one day where I can get through my job without having to run to the bathroom every thirty minutes (with the added bonus of not having to worry about traffic levels on my journey home); but on the other hand, having it start early would allow me to participate in at least one of the two teeny social events taking place at the end of the week.
It may appear at this point that I’m going to talk about how the fear of bleeding through one’s clothes is both obvious and tangible (and doing so would make perfect sense), but what I really want to say is that the solution to the blood loss problem is the thing that is driving the fear.
Back in the dark ages of 2013, I had yet another uterine surgical procedure. I’ve had many operations over the years and this one was fairly minor; it was what occurred after that gave me cause for concern. Before anyone starts to worry that a graphically detailed ‘botched-up-bodies’ style tale is about to emerge, relax – the operation went smoothly. Well, the portion of the operation that had been planned went smoothly. The second half of the procedure simply wasn’t carried out.
I don’t usually look forward to going under the knife, but this particular operation had me full of hope. The plan was to remove a large uterine fibroid then burn away the remaining womb lining. Bear in mind that, at this particular time, I hadn’t been diagnosed with Fibromyalgia so I was desperate to get my ridiculous levels of blood loss under control: getting rid of the part of the organ that was causing anemia, and subsequently, a lack of energy, seemed like a logical move – not to mention that an ablation would be the least invasive means of achieving that. The surgeon, however, had other plans.
that kind of jiggery-pokery is no longer something you can get away with in the age if the internet…
I awoke to discover that only the fibroid had been removed. When I enquired as to why that was the case, I was shown that the information on the surgical ‘run sheet’ only related to the fibroid – nothing else. This was one of those moments where I started to doubt the validity of my own memory. Had I not been told by the consultant that very morning how the lining was to be removed? Was that not what was written on the consent form that I signed? On the painful ride home, I was deflated but also determined to ensure that the surgical team completed what they had started. But that was so much easier said than done.
My first point of contact, as always, was my GP who tried to convince me that the full surgical procedure had been done, despite the surgeons themselves telling me that it hadn’t. He tried to skew the acronym TCRF to mean something other than Trans Cervical Resection of Fibroid: that kind of jiggery-pokery is no longer something you can get away with in the age if the internet… Seeing as communicating verbally was getting me about as far as trying to push a rope uphill, I decided to write a polite but curt letter explaining that I wished to talk to the consultant about the events of the day in question. As always, my request sounded much better on paper and so a follow-up referral was granted.
Cue the sad piano music…
When I asked the consultant why the ablation had not been done he replied with “we thought we’d done enough.” I’m one of those people who has no poker face whatsoever, so I’m assuming it was the look of incredulity that spread across my face that led him to immediately retract that statement and start talking about the risk of the fluid they use in the womb during the operation leeching into other pelvic areas. Obviously, any previous trust I’d had in this man was rapidly sinking to the bottom of a deep ocean of resentment. He then stated that I should just consider having a hysterectomy. When I asked him how that would help the Endometriosis he off-handedly said “it won’t. It will just stop the bleeding.” So, I was being told to have major invasive surgery to achieve the same effect as the uterine ablation that he had chosen not to do. Alrighty then. I discharged myself from his care and left the hospital, with a mind to getting referred back to the team that had initially diagnosed me a decade earlier. What I didn’t realise was that the consultant was using a Ferrari to get to the finish line before I was barely out of the stocks.
because of that letter, my GP refused to refer me back to the team I had originally been treated under
I really didn’t comprehend the importance of witnesses and recordings until a copy of the consultant’s letter arrived in the post. “She is requesting an ablation and I explained to her that this may not be very affective[sic]… She is keen to have endometrial ablation despite the low success rate…” I’d had THREE meetings with this consultant, including one on the day of the damned operation, and not once did he say any of the things he put in the letter, to my face. Not. Once. But, because of that letter, my GP refused to refer me back to the team I had originally been treated under in the years between 2003 and 2013. A team that knew a hell of a lot more about my insides than this man did.
Can you see now where the fears start to creep in?
Whether he’s telling the truth to me, or to my GP, he is still lying to one of us at some point along the line: either he initially led me on, for reasons unknown, or he tried to cover his back after the event. Whichever way the situation is observed, the one thing I know for sure is that I don’t ever want to be under anaesthetic in that man’s presence ever again. Not because I’m afraid he might kill me (we all pay for life with death, right?) but because I’m afraid that through some lackadaisical behaviour he will maim me. I’m not talking about some kind of Boxing Helena nightmare; just the very real possibility that he could remove a major organ (which is also a major muscle that has other organs resting upon it) and later claim that he had no choice, or that he told me this was going to happen.
Being anaesthetized in the presence of strangers is pretty much the most vulnerable an adult can be: it might not end in some kind of Lynchian horror story, but it only takes a careless attitude to detrimentally and permanently alter the trajectory and quality of a person’s life. In a case like this, I think the fear is justified.
I’m trying to some up your post for chronic illness bloggers Facebook page and I am speechless. I can’t believe you had to go through this, what a nightmare! I’m just horrified by how these doctors treated you.
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It was actually kind of surreal to to think about it again. I’m still hoping to get the operation completed – I’ve just got to think carefully about my approach for the correct referral. Gotta keep pushing! 💛
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