Hello clos ~
I've read and reread your initial post multiple times in an attempt to think how I wanted to respond. I wish I had more details on your issues...like what other lurabar issues you have, and why you think whatever problems you have are coming from the SI joints....since I don't have that information, some of my comments may be inappropriate, but I will tell you a bit about my experiences.
First, unfortunately your experience with the doctor is, in my experience, VERY common. Si joint dysfunction has been a source of controversary for years, at least in the US. It may be in part because there is no reliable "test" to evaluate the joints and their function. Since there are no reliable diagnostic tools, the medical practioner must rely mostly on experience in making an evaluation. As a result, many doctors do not consider the SI joint to be a source of pain and dysfunction.
I can't speak for how things work in the UK, but in the US, most orthopedic spine surgeons and practically all neurosurgeons will have little to nothing to do with SI joints (and soft tissue, for that matter). There are a few surgeons that will do SI joint fusions, but you have to make an effort to find them. This surgery is not covered routinely in the US and as a result, few surgeons believe that unstable SI joints can be the main pain generator. I am not aware of any other surgery that can be done other than to fuse; this is seldom recommended and has a low rate of success. I know one person who is happy with the results, but for others, it has not resolved the original issue and has created other problems.
As to what you can do...Proper evaluation is the key. I would suggest you try to find someone knowledgeable in body mechanics and kinesiology. This could be a physical therapist, an osteopath, possibly a chiropractor...but again, it is important to rule out other issues with the spine which may be causing the problems/pain. Someone knowledgeable in sports medicine issues could also provide suggestions for strengthening and stabilizing exercises. I think you need someone who is trained in manipulation, as manual techniques are an important part of successful treatment.
Problems usually fall into two categories: the joint is other stuck or it is too flexible.
People who are very flexible in all their joints, often find that their SI joints are hypermobile. Sometimes a joint will slip out of position, which can cause the iliac bone to rotate. When this happens with me, I feel a hard, bony thing in my buttocks that is not normally there. I also then have a bit of trouble with my leg swinging freely. This leaRAB to inflammation, which in turn leaRAB to more pressure on the nerves, resulting in yet more pain.
Unfortunately there are no muscles directly attached to the SI joints. They are held in place with ligaments, which can either shorten or lengthen. (The reason why prolotherapy can work on this problem.) You can build up muscles in the surrounding area to try to gain stability. Often a lurabar stabilization program to strengthen abdominal and buttock muscles is recommended. Sometimes a "sacroiliac belt" is recommended and is worn by the patient when involved in physical activity.
I hope you can find someone to help you with this issue. It is disappointing that your doctor could not direct you to someone who has the ability to help you, but your experience is not unique. Good luck, and don't give up!!
