"bladder/pelvic pain and chronic fatigue/flu"

About: GP surgery

(as the patient),

Firstly, to attempt a summary of the main facts relating to actual symptoms:

1. At age 43, I developed what felt like some kind of bladder/prostate discomfort very suddenly. This seemed chronic and drastically affected both my enjoyment of life and my ability to work. About 4 months after its onset, its intensity began to wane gradually. The discomfort declined until, within approximately a further 4 months, it had become a symptom that I can now live and work with (touch wood).

2. At age 48, I developed a constellation of some "flu-like" and a few other symptoms which lasted for around a year. The onset period - of increasing illness with these accumulating symptoms - consumed about a month of time, I guess. The symptoms then remained relatively stable for about 4 months, before eventually diminishing gradually (a few of them disappearing entirely), just as had been the case for the earlier pelvic problem - although now, some 30 months on, at age 51, I do not feel that I have fully recovered. For the last 2 years I have been working only half-time. (Prior to the onset of these symptoms I had been in full time work or education throughout my life without a break, and had rarely visited the doctor at all).

I did seek treatment and advice for these two problems at age 43 and 48 from my GP, and also spent a few £100 on private consultations. In both cases, I eventually had a few tests on the NHS. Nothing particularly "objective" was discovered in either case (except that the white blood cell count of my urine is higher than the normal limits for my age). I feel that most of the knowledge and understanding that I possess about both of these health problems has come from the internet, from specialist self-help books that I have purchased (some written by mainstream doctors, some by alternative practitioners, some by patients), and from my own experimentation with habits, exercise, food, etc. (Incidentally, throughout my life I have always done a great deal of physical exercise. If anything it is a *decrease* in the amount of exercise, and perhaps some changes in its type, that I believe may have contributed to the gradual control of my symptoms.)

It would take a very long time to go into all the details of my various symptoms and investigations and attempted treatments and self-treatments. Instead, I would like to make a few "your opinion" contributions of a more general kind. These basically reflect some thoughts and questions prompted within me by these experiences. In fact, my own independent struggle to "grapple with" the question of what might be physically happening to me, and what if anything I could do about it, is in my view the most significant part of "my story", outside of the symptoms themselves.

a) I do now wonder a lot about relatively rare illnesses - perhaps even illnesses currently un-named; or perhaps also illnesses currently even detectable by nobody other than the sufferer. In particular, there are epidemiological questions about the incidence numbers here, which interest and puzzle me. Are any professional epidemiologists thinking about this - using very general probabilistic models - the relative prevalences of the members of the whole spectrum of all current known and unknown illnesses? I think they should be. I feel it is an important question with huge policy implications. To give a simple, and more precise illustrative example question:

What is the probability that a patient selected at random from all those entering a GP surgery on an average day is attending the surgery because they are suffering from an illness with a prevalence of less than 1 in 10,000? (I mean the total probability accumulated over all such low-prevalence illnesses, collectively.)

- The correct answer in my opinion is that nobody knows this probability. From what I understand, nobody knows how many such patients a GP encounters in a typical week. Certainly it seems to me the GP does not know. My question would be: does anyone within the medical profession even have the vaguest clue as to the real answer to this question? For example can they estimate the probability correctly to within a factor of 100? I think epidemiologists should be thinking seriously about this type of question. One would be in a position to estimate the answer quite accurately *if* only one accurately knew the probability distribution of disease prevalence among all the different existing diseases: If a disease (rather than a patient) is selected at random (with no higher weighting given to the more prevalent diseases) then what is the probability distribution of that randomly selected disease's true prevalence figure? But of course nobody understands the shape of this distribution either. (Many of the low-prevalence diseases contributing are either usually undiagnosed, or even in some cases totally unknown to current medical science.) It may be possible to estimate the answer, but there are real problems of observability. To be a little provocative: in principle it is quite possible that as many as 1 in 5 patients visiting a GP surgery are doing so because of symptoms caused by a physical organic disease whose prevalence is less than 1 in 10,000. I would not claim that this is true: only that it is possible; it would not be an illogical claim to make.

There may be a great many such rare diseases. – does anybody know? (There are some issues of definition and terminology to complicate matters here - how are diseases distinguished from categories of diseases, etc - but the underlying question is still real and important.) This question is important because it relates to the issue of the likelihood that the medical profession will be currently able to give help, of various different kinds, to the patients whom they see. For example, they can often help a patient (as they did help me) by testing, in a precautionary way, for the presence of certain known medical conditions, which they often determine, by such tests, to be absent. This is a useful service, whether the result of the tests are positive or negative. It is a useful service to patients to test for and rule out certain known diseases. A different way of helping a patient is to cure, or at least relieve the symptoms of, a disease that they do actually have. Yet a different way I feel is to simply educate them. Etc.

If the (unknown) truth is that “rare diseases are common” (in the quantitative sense I hope I have made clear above), then in consequence it will often be difficult, and perhaps unrealistic, for patients to be correctly and fully diagnosed by the health service. Obviously this is a potential problem that one should do one's best to overcome - but in the end it may be an inescapable truth. A remaining question then becomes that of whether to accept this truth or to invent stories to assist in one's denial of it. A question of how to educate health professionals about this truth (if truth it is). Not to mention a similar education of the general public.

b) My last comment leads on to the subject of the tension in the caricature (often very realistic caricature) between the patient who believes he is physically ill and the doctor who suspects that the real source of the problem may lie in the patient's mind. I understand that to make a black and white division here is an oversimplification. Still, a few remarks stemming from my above-mentioned experiences:

Obviously there is a sense in which an "objective" symptom (or test result) may be more useful and attractive to a doctor than a subjective one. Certainly it relieves the doctor from of a certain kind of disconcerting uncertainty. But usefulness to a doctor does not correspond to importance to a patient. In fact I am inclined to believe that, in general subjective symptoms are more important to patients than objective ones in the sense that, on the whole, subjective symptoms tend to be the ones with the greatest negative impact on the patient's life, work, ability to care for their children and dependents, etc. For illustration, I know an NHS nurse socially. She once by chance visited me when I happened to be in a state in which I had just managed to stop the bleeding from an accidental blow to my upper forehead with a metal pole while doing some DIY building work. She took one look at the (wonderfully objective) wound on my head and began to insist that I must visit a hospital to have stitches. We argued for a while, and in the end I did not go because I could not really see the point. All right, I accept that there was some probably small chance that the wound would reopen before it completely healed, but I guessed that it probably wouldn't. (In the end it didn't.) Or a chance that it might perhaps leave a faint scar. But I did not feel that anything I care about was significantly affected by these possibilities. By only a day later, I don't think I could feel anymore than the mildest pain, and was feeling physically fit and well within minutes of stopping the bleeding. However this same nurse friend was shortly afterwards pretty dismissive about both of the chronic conditions I described at the top of this "story". She seemed tightly wedded to the notion that the main problem associated with each of them was my anxiety. The fact that one of them caused my work rate to drop drastically so that I would later lose half of my job, that it would seriously threaten my career, and ultimately cost me at least tens if not hundreds of thousands of pounds in terms of lost earnings hardly seemed to register with her at all. I could describe other similar cases: A urologist who exclaimed loudly and excitedly at the sight of the varicose veins on my leg - which I had not mentioned to him at all, and which I have had nearly all my life. Although, to a doctor, I grant their presence is an "objective" visual and tactile fact, nevertheless they actually *matter* to me not one thousandth as much (in terms of detrimental impact on my quality of life, earning potential, ability to care for my children) as the chronic bladder/prostate/pelvic pain and urgency which had caused me to consult that urologist in the first place, and which he seemed to view as meriting nothing more, in the way of treatment, than reassurance.

To summarize: In my opinion subjective symptoms of physical illnesses very often harm a patient much more than objective symptoms do. This matters to the patient, even if it does not much interest the doctor. It is possible that the doctor cannot trust the patient's account of the severity of their subjective symptoms. But very often (so I believe but of course cannot prove) the patient is in fact telling it just like it is. For example chronic physical discomfort, or increased tiredness with say a 40% increase in the number of hour spent sleeping per week can both be devastating problems for a relatively young working person with a family to support, and a career in which they have made a vast personal investment.

c) I see the difficulties with both of the problems I have mentioned above: (a) the frequency, in medical diagnosis, of the challenge of naming (or even detecting!) rare disease conditions; and (b) the overriding negative impact on patients of their subjective symptoms. But, as I see it, these states of affairs are an intrinsic part of the problem of medicine, and need to be faced squarely by doctors. It is a difficult problem to know that a patient is accurately describing real symptoms when the doctor has no other observation or measurement to corroborate that description. There's no easy solution. Listen and observe the patient’s manner very carefully? - But that is hard work, and time consuming to do well, and full of uncertainty. But the alternative is effectively just denial of an important reality (at least on many occasions) by the doctor I feel.

I could have filled in many details here, about my own particular medical case (for example: do I myself suspect I have had a disease of low prevalence? - I have not even said) but I feel that my above general impressions are more important.

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