Anyone who has ever dealt with chronic pain or illness is on good terms with desperation. We have all had those points when things are so bad that we would do anything, ANYTHING, to make it stop.
Trouble is, desperation can lead you down some very dicey roads, and sometimes leads you to make decisions that you might regret later.
Having a hysterectomy was on the back of my mind for years before I actually had it done. I knew that it was inevitable, but I didn’t think that the time would come at the age of 33. 38 maybe, but not 33. My first serious discussion about a hyst with my surgeon came the day after he did an exploratory laparoscopy that didn’t find the endometriosis we both knew was in there. I was kept in overnight after having a bad reaction to Tramdol, and we had the discussion the next morning while I was hung over from painkillers. “I’m not really sure what you want me to do from here,” he said to me. “Honestly,” I said, “I really just wish you could rip the fucker out.” Once he composed himself after laughing his head off, he said “I could do that for you. But let’s talk about that in clinic in 6 weeks”.
I probably had four follow appointments with him, going through loads of questions and talking it through. I knew this was going to be life-changing, and although I have never had the desire to have children, I knew that I was trading in the right to change my mind on the subject, never mind to potentially end up with a whole host of new problems. But I was desperate. And the pain got worse and worse over those months. And got even worse while I sat on an 8 month long waiting list once I said “go”. Desperation meant that I had to accept the consequences of whatever laid on the other side of that surgery, and whether I liked it or not, those 8 months on the waiting list gave me plenty of time to change my mind and back out. I was desperate, but I wasn’t going to make a decision like that without thinking it through first. Fortunately, once I woke up from the surgery, I knew that I had made the right decision. And it is the best decision I ever made.
Alas, desperation can also lead us down some dangerous roads. I tried hormone treatments recommended by doctors that turned out to be very bad for me. But I was desperate and was willing to give it a go despite better judgement. I, and most other Endo women, will admit to having mixed opiates (and sometimes alcohol) knowing full well how stupid that is in a desperate attempt to make the pain go away, at least for a little while.
When I was desperate for answers, I agreed to an investigation that caused me harm and which turned out to be unnecessary. I have stuck out treatments I knew weren’t working in the vain hope that might help. I’ve also stuck out treatments that kind of worked (a bit) for ages because a little was better than nothing. This was despite serious side effects that I really needed to get away from. The benefits did not outweigh the risks, but I was desperate, so I kept at it. Interesting to come across this on the CBC today on this topic - http://www.cbc.ca/news/health/why-more-medical-tests-and-treatments-aren-t-always-better-1.2594843
I have witnessed many Endo Women part ways with their money and sometimes their sanity in the pursuit of anything that might help. It’s one thing when it’s giving a complementary or alternative therapy a try and finding out that it isn’t for you. It’s another thing when you are re-mortgaging the house to plunk down thousands of pounds to seek treatment in the US with a doctor you never met who has a vested financial interest in having you go along with whatever they recommend.
It’s sad to say, but even the medical profession has its types who prey on those who are desperate. Sometimes the “do no harm” ethos gets replaced with “I don’t know what to do so we’ll try this even though I don’t know if it will work”. Sometimes “do no harm” is replaced with “wow, what an interesting patient to try out my new, soon-to-be-patented-but-so-far-unproven theory on. I’ll get this paper published, no problem!”. And worse, the ones that full well know what they have to offer probably won’t work, but will do it anyway because your private insurance will pay for it.
I was at a pretty desperate point with the Crohn’s at the beginning of the year. I was slow to fully respond to the steroids and was really beginning to suffer from the side effects, especially the sleep deprivation and mental health issues. I had a bad reaction to the Azathioprine. I felt truly awful, and got myself backed into a corner by a bullying consultant. I saw my ever-sensible osteopath that same day who upon hearing this said, “Whatever happens, DO NOT let them try and run experiments on you!” Fortunately, that snapped me out of the desperation and I put my foot down on that consultant (and then later fired him for being an asshole). I know that I made the absolute right decision for me, but I had to haul myself out of a place of desperation to get to a place of strength of stand up for myself.
Desperation clouds your judgement. It's a dangerous place for patients. Beware.
Having a hysterectomy was on the back of my mind for years before I actually had it done. I knew that it was inevitable, but I didn’t think that the time would come at the age of 33. 38 maybe, but not 33. My first serious discussion about a hyst with my surgeon came the day after he did an exploratory laparoscopy that didn’t find the endometriosis we both knew was in there. I was kept in overnight after having a bad reaction to Tramdol, and we had the discussion the next morning while I was hung over from painkillers. “I’m not really sure what you want me to do from here,” he said to me. “Honestly,” I said, “I really just wish you could rip the fucker out.” Once he composed himself after laughing his head off, he said “I could do that for you. But let’s talk about that in clinic in 6 weeks”.
I probably had four follow appointments with him, going through loads of questions and talking it through. I knew this was going to be life-changing, and although I have never had the desire to have children, I knew that I was trading in the right to change my mind on the subject, never mind to potentially end up with a whole host of new problems. But I was desperate. And the pain got worse and worse over those months. And got even worse while I sat on an 8 month long waiting list once I said “go”. Desperation meant that I had to accept the consequences of whatever laid on the other side of that surgery, and whether I liked it or not, those 8 months on the waiting list gave me plenty of time to change my mind and back out. I was desperate, but I wasn’t going to make a decision like that without thinking it through first. Fortunately, once I woke up from the surgery, I knew that I had made the right decision. And it is the best decision I ever made.
Alas, desperation can also lead us down some dangerous roads. I tried hormone treatments recommended by doctors that turned out to be very bad for me. But I was desperate and was willing to give it a go despite better judgement. I, and most other Endo women, will admit to having mixed opiates (and sometimes alcohol) knowing full well how stupid that is in a desperate attempt to make the pain go away, at least for a little while.
When I was desperate for answers, I agreed to an investigation that caused me harm and which turned out to be unnecessary. I have stuck out treatments I knew weren’t working in the vain hope that might help. I’ve also stuck out treatments that kind of worked (a bit) for ages because a little was better than nothing. This was despite serious side effects that I really needed to get away from. The benefits did not outweigh the risks, but I was desperate, so I kept at it. Interesting to come across this on the CBC today on this topic - http://www.cbc.ca/news/health/why-more-medical-tests-and-treatments-aren-t-always-better-1.2594843
I have witnessed many Endo Women part ways with their money and sometimes their sanity in the pursuit of anything that might help. It’s one thing when it’s giving a complementary or alternative therapy a try and finding out that it isn’t for you. It’s another thing when you are re-mortgaging the house to plunk down thousands of pounds to seek treatment in the US with a doctor you never met who has a vested financial interest in having you go along with whatever they recommend.
It’s sad to say, but even the medical profession has its types who prey on those who are desperate. Sometimes the “do no harm” ethos gets replaced with “I don’t know what to do so we’ll try this even though I don’t know if it will work”. Sometimes “do no harm” is replaced with “wow, what an interesting patient to try out my new, soon-to-be-patented-but-so-far-unproven theory on. I’ll get this paper published, no problem!”. And worse, the ones that full well know what they have to offer probably won’t work, but will do it anyway because your private insurance will pay for it.
I was at a pretty desperate point with the Crohn’s at the beginning of the year. I was slow to fully respond to the steroids and was really beginning to suffer from the side effects, especially the sleep deprivation and mental health issues. I had a bad reaction to the Azathioprine. I felt truly awful, and got myself backed into a corner by a bullying consultant. I saw my ever-sensible osteopath that same day who upon hearing this said, “Whatever happens, DO NOT let them try and run experiments on you!” Fortunately, that snapped me out of the desperation and I put my foot down on that consultant (and then later fired him for being an asshole). I know that I made the absolute right decision for me, but I had to haul myself out of a place of desperation to get to a place of strength of stand up for myself.
Desperation clouds your judgement. It's a dangerous place for patients. Beware.
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