Apotemnophilia was first described in a 1977 article by psychologists Gregg Furth and John Money as primarily sexually oriented, in 1986 Money described a similar condition he called "acromotophile", namely sexual arousal over a partner's amputation. Publications before 2004 were generally case studies. The condition received public attention in the late 1990s after a Scottish surgeon, Robert Smith, amputated limbs of two people who were desperate to have this done and were otherwise healthy.
In 2004 Michael First published the first clinical research in which he surveyed 52 people with the condition, a quarter of whom have had an amputation. Based on that work, First coined the term "body integrity identity disorder" to express what he saw as more of an identity disorder than a paraphilia. After First's work, efforts to study BID as a neurological condition looked for possible causes in the brains of people with BID using neuroimaging and other techniques. Research provisionally found that people with BID were more likely to want removal of a left limb than right, in accordance with damage to the right parietal lobe; in addition, skin conductance response is significantly different above and below the line of desired amputation, and the line of desired amputation remains stable over time, with the desire often beginning in early childhood. This work did not completely explain the condition, and psychosexual research has been ongoing as well.
As of 2014 it remained unclear whether BID is a form of human diversity or a mental disorder, similar to the development of the concept of gender dysphoria. There was debate about including it in the DSM-5 and it was not included; it was also not included in the ICD-10. It has been included in the ICD-11, which reached a stable version in June 2018, as 'Body integrity dysphoria' with code 6C21. The ethics of surgically amputating the undesired limb of a person with BID are difficult and controversial.
BID is a rare, infrequently studied condition in which there is a mismatch between the mental body image and the physical body, characterized by an intense desire for amputation of a limb, usually a leg, or to become blind or deaf. The person sometimes has a sense of sexual arousal connected with the desire for loss of a limb or sense.
Some act out their desires, pretending they are amputees using prostheses and other tools to ease their desire to be one. Some people with BID have reported to the media or by interview over the telephone with researchers that they have resorted to self-amputation of a "superfluous" limb; for example, by allowing a train to run over it, or by damaging the limb so badly that surgeons will have to amputate it. However, the medical literature records few, if any, cases of actual self amputation.
To the extent that generalizations can be made, people with BID appear to start to wish for amputation when they are young, between 8 and 12 years old, and often knew a person with an amputated limb when they are children; however, people with BID tend to seek treatment only when they are much older. People with BID seem to be predominantly male, and while there is no evidence that sexual preference is relevant, there does seem to be a correlation with BID and a person having gender dysphoria or a paraphilia; there appears to be a weak correlation with personality disorders. Family psychiatric history does not appear to be relevant, there does not appear to be any strong correlation with the site of the limb or limbs that the person wishes they did not have, nor with any past trauma to the undesired limb.
As of 2014 the cause was not clear and was a subject of ongoing research.