Confused & fed up

I was diagnosed by my GP has having a pilonidal abscess in July last year. Since then I have barely been off antibiotics, just over 10 courses ranging between 1 and 2 weeks. Each time they cleared it up, but it would be back within around 10 days of finishing the course. The doctors (a different GP virtually every time) always said they would just try one more time before referring me to a surgeon.

My symptoms have never been very typical. There is a very obvious hole and when it flares up that will get red around the edges, sometimes almost black. Very occasionally it will discharge, but that's probably only happened 3 times. The real problem has always been accompanying lower back pain. The doctors tended to put this down to the abscess being internal.

I was finally referred and had an appointment for November, only for that to be cancelled a week before so it would be referred to a specialist surgeon.

Just before Christmas the antibiotics stopped working, apparently because I'd probably become immune to them. They tried me on some others which had been stopping it progressing but not taking away the pain. There has been a flurry of activity in the last week, seeing various different people, going to a&e, all resulting in seeing the surgeon today.

He can see that I have a sinus but doesn't think that is the cause of my lower back pain, he thinks that is a problem with my sacroiliac joint. When I questioned why the pain went away with antibiotics he said it's probably a placebo effect. He said he would do surgery, either the barcombes or karyjakis techniques, which I've not heard of before. But he advised against doing it now because he doesn't think it will resolve the pain I'm getting and may make it worse. I have another appointment for 6 months.

I'm so confused now. Does anyone else have similar symptoms to me? I have read that there are others who don't have much in the way of external symptoms and I know that lower back pain can be caused by a pilonidal. I feel like they don't believe me though! I've not even had the opportunity to spend more than 5 mins discussing my symptoms with a doctor, and definitely don't feel they are hearing what I'm saying.

Sorry for this long post.. I just need to get this off my chest and try to figure out what to do next. I'm in my second week off sick from work because of the pain, and I really can't let this carry on. The pain is helped by codeine but I find it almost impossible to stay awake or function normally on it. I feel like I'm back to square 1!

If you can, I would travel to see Dr Asha Senapati in Portsmouth about it, From my experience so far hers is pretty much the only opinion that I would trust. If my recent setback is a recurrence, then I'm wasting no time seeing anybody else, and will be trying to see her as soon as possible.
Thank you for your reply. I have made an appointment to see her Monday! I also went to see an osteopath. He said it's definitely not my sacroiliac joint as there are things I can do easily that I wouldn't be able to if it was. He said there is a lot of muscle spasm there but that could be in response to the trauma of the abscess.

The plot thickens... Roll on Monday.
I'm having the op on Monday! The Bascomb procedure, she said it didn't need a cleft lift. She too thinks I have another problem with my back, although she thinks it's my coccyx. The Physio I've now seen is convinced it's just from sitting awkwardly for so long. Keeping everything crossed that Monday fixes it once and for all. Thank you for asking :)