Jane S, UK
At the beginning of October 2018, I suddenly began to suffer acute, severe coccydynia and felt an anatomical change such that I felt like I was sitting on a bony lump, had trouble with bowel movements, and could not make even quite efficient bending movements without a great deal of pain. I saw my GP, and was referred through a number of different and equally ineffective channels through the NHS over the course of six months. My coccyx pain was so severe that I had to take time off of work at points, which was a significant issue because I am an academic working in a major European research project and I was expected to travel internationally a great deal around that time.
During these months, radiographic and MR imaging was taken because the word "lump" raised suspicions of cancer. However, nobody listened to my observations about the nature of the anatomical changes, and since "the computer system wasn't working" on the day I finally saw someone in the orthopaedic clinic at the Leicester Royal Infirmary, I was not permitted to examine the radiographic images. Once I was able to speak to an orthopaedic specialist, I was effectively advised that since I didn't have cancer (the chap who made the diagnosis of "nothing interesting" being a grand old friend of the specialist and therefore possessed of godly expertise, I am sure), and that it wasn't anyone's problem that I was in extreme pain. I should simply take pills and go away - a bit rich since taking excessive anti-inflammatories had caused my glomerular filtration rate (a proxy for kidney function) to dip worryingly low. Continued complaining on my part led to a final "diagnosis" of a "hooked coccyx".
I have at least hypermobile Ehlers-Danlos syndrome, though I also fulfil some clinical criteria for Classical EDS, and my EDS specialist recommended that I find someone to make internal coccyx adjustments. My osteopath in Leicester gave me Dr Durtnall's contact information and I made an appointment to see him at Sayer. I was initially critical of taking this approach for a number of reasons: 1.) the treatments and the associated rail journeys would be exorbitantly expensive; 2.) internal adjustments do not seem to be very widely practised; 3.) I do not have private healthcare insurance; and 4.) I had spent six months being shifted through an eternally-revolving series of inexpert healthcare practitioners, prescribed antibiotics, sent for a colonoscopy, ignored, and being told to just live with the misery.
I am immensely glad that I did get assessed and have a series of internal adjustments by Dr Durtnall (see Doctors and specialists in the UK, London), and I am grateful for his interventions. I also appreciated being able to see and receive copies of my own medical images, and the care which was taken to ensure my mental and physical comfort in light of my previous experiences and my EDS. To make a long story short, I no longer need to take medication for the coccydynia and have experienced an improvement of about 85% overall. I absolutely recommend that if you are considering having Dr Durtnall assess and treat you, to pursue it as soon as you are able. It has made a world of difference.