I was raped from infancy through to age twelve by multiple abusers. It wasn’t nice. It hurt me psychologically and physically. I have appropriate psychological support after a long battle. There has, however, been an ongoing failure to deal with the physical damage my body sustained in an appropriate way. Initially this was probably due to misunderstanding and an assumption that my problems were principally psychological. That simply no longer appears to be the case.
In discussion with my friend who is an Osteopath, we have arrived at the conclusion that there is quite probably a central nervous system issue. I occasionally enjoy a sporadic and progressive return of sensation from the neck down into my upper torso. I have no control of many of the muscles in my pelvis. I have suffered lifelong urinary incontinence attributed to the problems with my neck. My anal sphincter has been shown to be “stretched” and in part made of scar tissue. My rectum is internally prolapsed. The muscles in the back of my body have progressively failed over the last three years, starting with the right side, and progressing to the left. My diaphragm does not significantly displace at any stage of respiration. My theory/experience is that it the right hemisphere is paradoxically enervated in part and constantly drawn up to compensate for the failure of my pelvic floor – it effectively reduces the pressure in my abdomen – and this has been borne out by electromagnetic phrenic nerve testing.
I want to recount an experience from May 2004 that may shed light on what is going on, what I have just written. I had been concentrating my physical recovery work on strengthening and balancing muscles in my pelvis and back but shifted my focus somewhat to how I moved my neck. One day I was being very careful with the movements of my neck and something at the top of my neck clicked into place. My head rebalanced and twisted round to accommodate. The next thing I knew, as I stood before the mirror cleaning my teeth, a whole bunch of muscles in my pelvis started working. First I think was the urinary sphincter – I felt it close an unusual and unfamiliar experience. Then the anal sphincter and rectum – I felt my rectum uncurl up inside of me – it has now been shown that my rectum is prolapsed internally. Then muscles in the back of my hips and legs started working. My hips rotated a little and a muscle on the left of my spine seemed to relax, lengthening my lumbar spine, and my abdominal contents were pushed up inside of me as my pelvic floor and some other muscles in my pelvis started working. As I turned round, a muscle I had never before felt contract sucked in my belly, and I felt my lumbar spine supported. My friend the Osteopath explained to me this might have been the transverse abdominus as that muscle is co-enervated with the pelvic floor. I had never felt that sensation and it was amazing. Within half an hour the muscles behind my shoulders that were not working started doing so, the muscles behind the middle of my spine in my back engaged and I was standing two inches taller than I had been all my adult life.
This was all a shock to me. I had no Idea what I had done. I could walk properly, in a balanced fashion, and my body felt amazing. I could breathe properly and had never known that I was not doing so. I was two inches taller. I never realised before that people didn’t have to fight their own legs to walk, which is how it feels for me. As I moved to sit in a chair my body collapsed back and all the gains of that morning were immediately lost. My body corkscrewed back down into its habitual position. My feeling is that something somewhere was strong enough for me to stand but not for me to sit – or perhaps that some of those muscles that had just started working relapsed into their old patterns setting off the collapse as I tried
I realised afterwards that this physical experience meant my body had been desperately hurt by the abuse and made the link to former physical problems.
I was unable to recreate this situation – I was unsure what I had even done. Shortly afterwards, perhaps with mistaken attempts to do so, I sustained an injury to my neck and lumbar spine. These structures were already dysfunctional as a result of the compensatory pattern to the organic damage sustained in the abuse. One morning on stepping out of the shower I experienced a spasm that started in my pelvis and ricocheted all the way up my spine. Some muscles behind my right shoulder stopped working immediately and I felt very unbalanced. Since that time my body has progressively decayed to the point where almost all the muscles of my back have failed and atrophied as I have progressively lost control. This started with the back right side of my body but has progressed to the left side as time has ticked by. My neck and pelvis are shot. My sacrum has curled into a ball and my lumbar sacral joint has collapsed back on itself, whilst from its base my spine is in kyphosis to the base of my neck. This has become more pronounced as my shoulders have collapsed over my chest as the muscles in my back have failed. Walking, sitting, standing, sleeping – everything is now painful and increasingly so.
In October 2004, my doctor referred me to The Royal National Orthopaedic Hospital. The first doctor I saw there undertook a very thorough examination (2 hours) and came up with a care plan: I would be referred to a neuro-urologist, an appropriate specialist to deal with my colo-rectal problems and when these reports were in I would be admitted for intensive inpatient physiotherapy. He told me I could expect to be in hospital for several months.
Unfortunately the person to whom I was referred to investigate my colo-rectal problems was a Gastroenterologist. She conducted an extremely painful rectal exam, told me “everything is quite fine up there but you will never recover”, “we must get you to stop worrying about your body so much” and “you’ve been reading the anatomy books haven’t you” – complete with wagging finger in the air. A year later when my GP re-referred me as she had become certain something had been missed, this person admitted she had been acting outside of her specialty and could not further any more investigations. She had also acted against the psychiatric advice in her hands that my physical problems were not a psychological manifestation but most likely due to organic damage from the abuse. This person formed the opinion my problems were psychological. She was a very famous doctor and current president of the British Medical Association. Her colleagues have now reluctantly proved some of the damage to my body but it has been like getting blood out of a stone. The first thing said to me by the person who took over was “we don’t normally do anything for people like you”.
I went back to the Orthopaedic Hospital and the boss of the unit I had been referred to saw me this time. This man, Joseph Cowan, basically told me he did not believe a word I said and that my attitude needed to improve. He said he might admit me to his unit if my attitude did improve. I asked for a second opinion, which he organised. I then complained about the way this man had treated me and he wrote to the other doctors I had been referred to asking them not to see me as I had complained about him. This is against the General Medical Council’s guidelines and clearly highly unethical. I have since found out under freedom of information laws that the maximum time from GP referral to admission to doctor Cowans unit is 21 weeks. He kept me out of his unit on spurious, manipulative unprofessional grounds for a year whilst my physical health deteriorated and then ensured they were not investigated thoroughly when those investigations started proving useful to me and damaging to him.
The body of evidence that I am now being deliberately denied medical care in the UK is now overwhelming. Perhaps this is to protect reputations of these doctors who early misdiagnosed my situation without proper investigation, perhaps the reasons are more nefarious. I do not say this lightly and have documented evidence. This has been allowed to progress to the point where frankly it threatens my life. At the current time, despite my knowing quite clearly much of what is wrong, there is no overall understanding of my situation from the doctors, no care plan or treatment in prospect, after three years of reluctant investigations. I am having to fight tooth and nail for needed investigations and spend all my money and now go into debt to pay for them privately.
The latest manifestation of this is that when I see a doctor now they say “even if we discover what is wrong with you we don’t think there is anything we can do to help”. Talk about “putting the cart before the horse”. How can you know you won’t be able to help in the future when you admit you don’t know what is wrong now? This is seemingly an attempt to evade British negligence laws, which demand some intervention must have been possible before negligence can be proved. The doctors here don’t seem to understand I don’t want to prove negligence – I want a body that works, or is at least not decaying further. My main concern and that of my family, friends and have the team supporting me psychologically is my physical survival.
If you know someone who can help, a philanthropist who might med-evac me out of this medical backwater, a media person who can cast the spotlight of publicity on this case, or just friends who might know one of these people, please, do it.
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