I don't think I ever blogged about what actually happened at my pain clinic appointment. I told a few close friends and family members but because I went straight from the appointment in London to the Lake District for a christening I never got round to posting an update on here.
Before the appointment I sat nervously in the waiting room, my stomach filled with butterflies and nervous trepidation. I think it was because I felt like a lot depended on what they had to say. The last pain Dr at QE2 hospital had said she couldn't help me because I was such a complicated case which was how I ended up at UCL in the first place. Surely I wouldn't be too complicated for UCL? Or what of they looked at my file and scoffed saying that they didn't know why I had been sent to them? I felt like this was my last chance saloon; I had been told they were the best pain team in the UK and if they couldn't help me then no-one else would be able to.
When my name was called I looked up and there was a look of recognition on the woman's face. She seemed vaguely familiar. It was only when she asked me if I had been a patient in the QE2 a couple of years ago that I recognised her. She was the pain nurse that had treated me there. She was actually the first person to give me a taste of MST (a long lasting morphine tablet) as until then I had relied on fast acting opiates to cope with pain. I remember one day her coming and increasing my MST dose. She told me that she had been in discussion with St Marks about my pain relief. Apparantly they didn't like patients coming from other hospitals on big doses of morphine as it could make pain more difficult to control after surgery but she had stuck two fingers up at them (professionally and metaphorically of course!) and increased the dose anyway.
So how ironic was it that I would meet her now when it was exactly those increases in my opiate doses over the years that lead me to need help now.
She took me through to see the doctor who was younger than I expected. I had been told he was the expert and I guess I had expected him to be older in order to have gained the expertise but no matter, as long as he knew his stuff and could help me he could be any age he liked! He spoke with an accent but I couldn't place it. Maybe polish or some other Eastern European country but to be honest I'm rubbish with accents so he of could been from Newcastle!
He asked me loads of questions starting from birth and going right up until present day. We talked about my spinal surgery as a teenager and how a colitis diagnosis in 2007 lead me to St Marks. ( You see, I really am unlucky, not only are my bowels dodgy, my spine gave up on me years ago too!). He held a very interesting and perhaps controversial opinion on hospital doctors saying that they had broken their Hippocratic oath of 'do no harm' because they pumped me, and other patients like me, full of drugs whilst in patients on their wards and then we were left to try and sort ourselves out when we were discharged. Often GPs don't have the specialism or knowledge to cope with patients in such pain from such complicated medical problems so they just increase the dose of the painkiller whilst making a referral to him he said. Part of me did agree with him but also, I argued, I needed those drugs to cope with the pain I was suffering at the time. But he felt that hospital doctors should explore alternative pain relief because the medication they give to control a week or month of acute pain can lead to a lifetime of problems with opiate usage.
My case was slightly different (nothing unusual there then!) because although it's true that I had more pain when I was in hospital, my pain is ongoing due to my disfunctional pouch and bowel problems. The doctor said that there are only 3 ways in which to treat pain:
1) medication: I was already on a shed load of that so under NO circumstances were the doses or volumes of my drugs to be increased. He said that the use of all this medication had taken at least 10 years off my life expectancy. Not something you get told everyday!
2) spinal infusions: I had already had one of those and that had lead to my dead leg and ultimately to finding the cyst on my spinal column so they were a no-go
3) physiotherapy and psychotherapy. This was the course of action that he felt was going to help me the most because he dropped the bombshell that I'm never going to get any better- I just need to learn how to cope with the pain and manage how it affects my day to day life.
Wow. So the doctors at St Marks don't think my bowels will ever get any better and he's not only telling me that the pain will never go away but also that my life expectancy has been reduced. Wow. This was a lot to take in. But the doctor carried on talking as if telling someone that their pain won't go away, it won't get better, ever, was an everyday occursnce. Although I guess to him it probably was.
He said that he didn't want to increase my daily medication but suggested that I try infusions of ketamine and lydocaine. Yes, ketamine is the 'horse drug' and what is taken at raves but it started out life as a proper bone fide human medication! The idea is that the nerves that carry pain messages to the brain become irritated or damaged which ultimately causes increased pain. The infusions should reduce the irritation to the nerve this reducing pain. Well that's the science behind it;whether it works or not I don't know but I'm willing to give it a go! I am booked to have the lidocaine in May and the ketamine in July. If they helped to manage my pain then I could have these infusions 6 weekly. I'm also being referred to another consultant who actually worked at St Marks and has an interest and speciality of chronic Gastro pain so that's promising.
Then I was bustled out of the doctors office and into a smaller room with the nurse. She told me about a programme that the hospital run to help people like me manage pain. It's 7 weeks long and all day every Monday. It's a group thing with other women with pelvic/Gastro pain and the idea is to give you psychotherapy to help you come to terms with the fact that 'this is it' and physiotherapy to help you get in control of the pain rather than the pain controlling you. It all sounds really good and I'm up for it. I feel like this is the right time for me tackle it and embark on this programme. A year, or even a few months ago I don't think I would be ready or able to cope as I'm under no illusions that this isn't going to be easy.
And that's how I found myself sitting in The 52 Club in central London on a LINK information day last week with 20 other women. Some had prolapses, others had issues after childbirth and a lot seemed to have urinary/bladder pain. But the one thing that we all had in common was that pain was central to our lives and was stopping us from living life to the full. You could pass these women in the street and think that there was nothing wrong with them; you wouldn't know that they were harbouring so much pain and with it hurt and anger and despair. It made me think of this quote...
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