Imran Khan

I was fifteen the first time. I remember the room, I remember that it was somewhere in the small hours, and I remember waking folded in half with the pain so far past anything my body had a filing category for that my first clear thought — before fear, before anything — was that something inside me had torn.

Nothing had torn. Twenty minutes later it lifted like a hand letting go, and by morning there was no evidence at all that anything had happened. No blood. No mark. Nothing to show anyone.

That is the part that kept me silent for the next decade. Not the pain — the absence of evidence, and the specific, private fear that came with the dreams. I did not tell a friend. I did not tell a doctor. I typed things into search bars at three in the morning and closed the tab.

Why I am not a doctor, and why I wrote this anyway

I want to be completely straight about my qualifications, because this is a health topic and you should be suspicious of anyone who is vague about theirs. I have no medical training. I am not a physician, a physiotherapist, or a researcher.

What I have is twenty years of living with this condition, several of them spent reading every paper, guideline, case report and patient thread I could find; and a system, built slowly and tested on myself, that took my episode rate down by something in the region of 90%.

That combination is worth something and it is also worth being honest about its limits. Lived experience tells you what an episode is actually like at 3 a.m., which the literature is remarkably bad at. It does not tell you whether your particular rectal pain is a benign spasm or a fissure, an abscess, or something that needs a colonoscopy. Only a clinician can do that, and this is a diagnosis of exclusion — which is exactly why the red-flags chapter sits early in the book, before any of the self-management.

How this was researched

Three sources, and I keep them clearly separated throughout:

• Published medical literature. The Rome IV diagnostic criteria, the Rome Foundation's work on gut–brain disorders, the evidence-based management pathway from the International Journal of Colorectal Disease, the salbutamol trials, the Cleveland Clinic and Merck Manual overviews, and the ICD-10 coding. Every article on this site lists its sources at the bottom.
• Patient community reports. Public discussion threads, anonymised and paraphrased. These are presented as anecdote, never as evidence, and I say so wherever I use them — but they are the only place some of the most useful practical discoveries exist, the tennis ball being the obvious example.
• My own twenty years. Labelled as mine, and never dressed up as data.

When I do not know something, I say so. When the evidence is thin — which, for this condition, is most of the time — I say that too, and I tell you what kind of thin it is. Magnesium is a good example: many sufferers swear by it, there is no trial evidence for it in this condition at all, and I still take it, and I explain exactly why that combination is reasonable rather than pretending it is settled.

Why the silence is the real problem

Somewhere between eight and eighteen people in every hundred have proctalgia fugax. On a normal train carriage, several of the people near you have felt what you have felt. And almost none of them are talking about it, because it is over before you could get an appointment and it lives in the one region of the body most people would sooner lose a finger than describe to a professional.

That silence is why the research is thin, why the funding is scarce, why doctors see it described once in a textbook, and — most of all — why every person who gets it spends the first years convinced they are the only one.

Most of what makes this condition unbearable is not the pain. It is being alone with it. That is the specific thing I am trying to fix.

Getting in touch

If a technique here changed one of your nights, I would genuinely like to know — and if you think I have got something wrong, I would like to know that even more. Corrections make the next edition better. Send me a message, or write to hello@proctalgiafugax.co.

And if you do one thing after reading any of this: tell one person. You can break someone's decade of silence just by saying the words proctalgia fugax out loud.