He chose not to respond and the surgery ignored many of the issues raised.
He has since left the surgery and I have not seen him since the meeting mentioned.
Following our appointment on Wednesday 19th June, I felt I needed to write to you concerning a few points which I felt you were reluctant to address. There are also points I need to raise with you, but have been unable to during our 3 appointments, not only due to lack of time, but also because the unremitting pain that I suffer makes it difficult for me to express myself clearly.
As you rightly pointed out, we did talk around in circles. I was left with the impression, rightly or wrongly, that you may not have comprehensively read my notes, and seem to base your opinion on those of other doctors, instead of relying on the medical facts. I feel this way because you seemed to want to help me in our first 2 visits, yet were reluctant to commit to any strategy in our last visit.
You directed me, and indeed very helpfully printed out for me, the letter dated 26th Nov 2012, from Mr Hillard, where he made 3 recommendations, only 2 of which were actually made to me during a consultation with him on 16th Nov 2012. He recommended that I do my own research on the internet into both of those treatments and, as per his letter, discuss my thoughts with my GP, that now being you. (My previous GP, Dr Hogan, would not discuss any of this with me as I was no longer in his surgery catchment and, disregarding my visible distress and request for continued support, refused me further treatment and care.) You seem very keen on me doing my own research and then informing you how I wish to proceed. However, Mr Hillard also recommended that the important and relevant points of Dr Coleman’s letter be “taken on board”, but I do not feel this has been done.
My original problem is still ongoing, being lower abdominal discomfort and pain, and uncomfortable and unpredictable bowel activity. This impacts greatly on my day-to-day functioning, including my ability to sleep, to carry out seemingly mundane tasks like walking, shopping, driving, housework … I struggle to make plans, to work and to function as a human, a woman, wife and mother.
My referral to both Mr Hillard and Dr Coleman were specifically for this; Mr Hillard on the suggestion of Mr Clarke, colorectal surgeon; Dr Coleman on the suggestion of Mr Lamperelli, the second colorectal surgeon who was to give a second opinion. Mr Hillard does not seem to be addressing this issue; he was reported to have said that my pelvic organs had significantly dropped, but will now only deal with my heavy and painful periods. These are a problem only 1 week out of 4, and although they are becoming more frequent, I am left with the impression that it’s not important enough to warrant even a discussion. I have had a blood test, yet despite numerous requests, have still not been told the results. Maybe you could tell me if, at not yet 40, I may be perimenopausal?Referring to the recommendations set out in Mr Hillard’sletter. Firstly, endometrial ablation; this looks to be unlikely to solve my lower abdominal pain or address the descent of my pelvic organs, or indeed to do anything to tackle the “strong element of PMS”.
Secondly, zolodex, the use of which in my case is confusing, but I believe I am to discuss with you according to the letter. The use of zolodex is not for painful periods, or descent or lower pelvic pain, but for cancers, endometriosis and infertility. The side effects include bone pain, hot flushes, stomach upset, memory loss, depression, difficulty urinating, weight gain, swelling and breast tenderness, and decreased sexual desire. The suggestion is to manage these symptomatically, but as I am unable to tolerate most painkillers excepting codeine and tramadol, which I limit due to the constipation effect (thus increasing my symptoms and defecation difficulties), I don’t see that this medication is for me.
The third and final suggestion was the hormonal menopause, which even he is reluctant to do; this leaves me with the impression that is probably the worst of all the suggestions.
In summary, I do not feel that any of these suggestions are actually addressing my problem. I am left with the impression that neither you nor Mr Hillard seem able to resolve my underlying issue. Your suggestion of breaking it down into manageable chunks is, to all intents and purposes, a good one. But all the research I have done leads me to conclude that the chunks on offer are not suitable for me.
I would also like to put forward my thoughts regarding the letter from Dr Coleman of 14th Nov 2012. I did try to raisewith Dr Hogan my concern that I did not believe that Dr Coleman had all of my test results – the latest proctogram of June 2012 was missing, and showed that I still had a rectocele and intussusception, and would have given Dr Coleman an accurate picture of my anatomy, which would have led to a more accurate and helpful diagnosis. I also need to point out that I feel the diagnosis of severe constipated IBS is not accurate. Although I do suffer at times from constipation, I suffer more frequently from diarrhoea and the passing ofmucous, and sometimes only mucous when my body seems to miss the cue that I am ‘empty’. I did explain this to Dr Coleman so am unsure as to why constipation dominant IBS has been diagnosed.
Dr Coleman makes repeated reference to my ‘mood disorders’. As we have discussed, I have made significant inroads in dealing with this and I do feel, to be completely frank, that what ‘mood disorders’ I may display are in no small part the result of my frustration due to the constant and repeated mismanagement of my physical symptoms by the medical profession.
I am the first to admit that my choice to self-medicate through narcotics was not in my best interests, but after so many years of being clean, combined with strenuous efforts keeping alcohol use to a minimum and refraining from smoking, surely this should no longer be held against me. My honesty in this matter seems to have worked against me, withsome of my ‘caregivers’ withholding treatment and condemning me, despite the many years I have been drug free. I do not take anything illegal now, and have not done so in a long while; I have been prescribed Valium and codeine, both of which I take very infrequently. They offer me little relief, if any, and I do not wish to develop a tolerance or habit, or have to deal with any side effects.
It is this that makes me very reluctant to take amitriptyline and nortriptyline. My quality of life is already poor, but the one thing I can rely on to provide me some relief is my active mind; however both these drugs have a sedative effect. When I have raised this concern to explain my reluctance in taking these meds, I have been accused of refusing treatment, which is not the case. Is it so wrong to want to hold on to some sort of quality of life without having to deal with drowsiness and possible side effects? The alternative I am given is ‘learn to live with it’, which is what I’ve been struggling to do through all manner of aches and pains, and to be honest, if I could ‘live with it’ I would, instead of darkening my GP’s door as often as I am driven to do.
It was the difficulty in living with this that drove me to seek medical help in the first place. It is not an easy thing to do, to lay myself wide open by admitting all this, especially after the countless times my pain and worries have been brushed aside, but here it is – most days I cannot physically function, I cannot escape the pain, the discomfort; I’m too afraid to leave the house; some days (most days) I can’t even leave the toilet. I cannot plan ahead, make appointments or promises, which I invariably have to cancel, or I arrive late. The worst thing, when I lose control of the pain and/or my bowels, the humiliation can be too much to bear, not just for me but for my family too. My life all comes down to the pain, I can’t seepast the pain to the point I feel the only reason I struggle on issimply to get my children to adulthood.
My appointments follow the same pattern of ‘do this’ or ‘tell us what you want’. What I want is, help. I want someone to really listen to what I’m saying, to take into account my worries, and then to come up with a plan that will help me. I want a GP I can rely on, who I feel is truly there to help me, to see me for the person I’ve become – scared, with low self-esteem because I’ve been doubted for the past 30 years, to realise that my supposed bravado is nothing more than a façade to protect myself. I want a GP who isn’t going to be distracted by medical politics – 3½ years ago, a dysfunction was discovered that could account for some of my symptoms. I was treated for it but it ended up causing more problems than it cured; I believe that is the reason no one wants to deal with what I’ve been left with – my ongoingbowel discomfort, the constant lower pelvic pain, the cramping and bloating and incontinence, the insomnia and exhaustion and distress.
The bottom line is, can you empathise with me? Can you understand that I am not making excuses, that I am trying to take responsibility for my life, that I want to make the right choices. I do not want to be a guinea pig where we try this and try that, and I end up in an even more unfavourable position than the one I’m in now? I am asking you to please help me.
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