Pain started with no obvious cause

Julie, UK -

Posted 2016-03-13

I have been reading this site since my pain began over two years ago. My pain started with no obvious cause, just sitting in a lecture theatre for a little longer than usual.

I had all the usual experiences, the GP telling you it would heal itself, being passed from one consultant to another with most having very little experience of the condition. I had two MUAs (Manipulation under anaesthetic, with a steroid injection thrown in!) These caused pain for a week or so afterwards but gradually improved things by about 50% for a few months each. I was lucky, my husbands company provides private medical insurance, so my options were much wider than some.

There were no experienced consultants near to where I live, (in rural Lincolnshire) but my insurance company found me one in Derby (65 miles away), Mr Jonathan Clamp, (see Doctors and specialists in the UK, Derbyshire) initially for the MUA. When the second one failed to fix things, he agreed to remove the coccyx. I Have been very happy with his treatment.

The operation was done on a Saturday, and I stayed in for one night, although I had a choice of up to two nights or to go home the same day. I felt sick for a day or so after the op but the pain was controlled with Codeine and paracetamol, it was more uncomfortable than painful. I did resort to oramorph at night for the first few nights at home, but am now just using paracetamol.

I was told to leave the dressing on for ten days, and not to touch it or get it wet. I used wipes when I went to the toilet, and so far, currently at day ten, there has been no infection.

I have just got back from the GPs having had the dressing removed. The nurse said the wound was healing well, and has left it open to let the air get to it.

I cannot sit, or lie on my back, which makes resting/sleeping uncomfortable. I lie on my side but as others have said this creates hip and leg pain so you wake often to turn over. I traveled home in the back of the car, lying down, which means you can't wear a seatbelt, but it was the only way to get home.

I'm feeling much more mobile now, although still have to be careful bending down too far.

I wanted to thank Jon for this site, it is the best source of information regarding coccyx pain I could find. I will update when I have my check up in April.

Update, 2016-04-10

I travelled to Derbyshire for my post op check-up a couple of days ago. It's a 65 mile each way journey so I took a codeine before I went. I decided to sit for as long as possible, to test out the pain level, as up till then I had barely sat at all. I managed most of the way there before I gave in and laid down on the back seat.

The consultant was pleased with the healing, although I did have a small hole left which had refused to heal. On inspection, he found a small bit of suture (the so-called dissolvable internal sutures) which was preventing the last bit closing fully. I had been cleaning this with saline, and no infection was present.

He discharged me, and I travelled home feeling very pleased with myself!

However, the next day was very painful (I think the codeine had worked too well, and masked the pain!) Since then I've been unable to sit for more than a few minutes, even leaning forward.

The problem is, you have a couple of days feeling amazing, and then you push things too far. So I'm back to standing to eat meals, but I will have to try driving at some point, just for a short journey. I've asked for another sick note for two more weeks. My problem is my commute to work can take up to an hour and a half each way, although I only work for two days per week. Physically I feel really well.... as long as I don't sit down!

Update, 2016-05-22

Twelve week update!

Things have improved greatly in the past few weeks. I still have bad days with strange nerve pain, but its more in the 'sit bones' now. I think I need a softer coccyx cushion, as my old faithful seems too firm now.

I returned to work at eleven weeks post op, just for a day to start with. The driving was much better than expected, though I did take paracetamol and used a lidocaine plaster on the sit bones (not the surgical site). This seemed to help.

This week I did two consecutive days driving 90 miles each day. I was a bit sore but still better than before the operation.

I feel like life has re-started, after the long weeks of recovery. It's very easy to get despondent, as recovery is very 'up and down'. But now when I have to sit, I no longer get the sit to stand pain, and the soreness recovers more quickly. There is no 'accumulation' of pain over the day either. I fully expect to get bad days, but as long as the good outweigh them, I'm happy.

I am very relieved that the surgery has given improvement, as I never had any trauma to the coccyx, and MRIs never showed anything wrong with it. Some would say I was not a good candidate for surgery, but it was my last hope. The steroid injections only gave partial relief (about 50% for a month or so each) but now at twelve weeks, I'm already 50% better, and hopefully will continue to improve. My hope before surgery was that I could at least achieve the level that the injections gave. That level of pain I could cope with.

So, for me, so far, it was well worth going through with the surgery. I was lucky and had no infections, but also, my pain was always ONLY from the coccyx. I never suffered hip or back problems, which may cause other problems for some.

I have a long haul flight booked for after Christmas, it's a free (work related) trip which I have no intention of missing! So fingers crossed!

Update, 2016-10-09

Well, seven months since my operation and the time has flown. Last month I went on holiday, involving a three hour flight. I managed to sit without any cushion for just over an hour, before I gave in and used a small inflatable 'neck' cushion. If you put a tiny amount of air in it you can sit on it, although it's no good for driving, as you wobble about too much!

I still use a soft memory foam cushion for sitting at the computer and driving, although I can manage without for short periods. I never use one going out for meals (or eating at home) any more.

The nerve pain I had is completely gone, all I get now is an ache occasionally, if I sit for too long. Also, every now and then it gets a bit sore for no reason, but usually gets better within a week or so.

I don't take any pain killers for it, it's more of a slight niggle, which just makes you fidget a bit more than usual.

My life is no longer dominated by avoiding sitting! I can sit on a sofa for half an hour or so, but now find hard seats uncomfortable (but who doesn't!) I have absolutely no regrets about having the operation. The recovery can be long and uncomfortable but so worth it (for me at least).

I still have a long haul flight to cope with at Christmas, so will update again at the one year mark!

Update, 2017-03-12

It's been just over a year since my coccyx removal. Recovery was slow, and 'up and down'. I still get the odd day or so when I feel a little sore, but it doesn't affect my life any more. I no longer take a cushion to work with me, although I do still use a soft one in the car for long journeys.

I travelled to Hawaii (total 17 hours flying plus travel to airports etc) after Christmas and managed fine with my memory foam cushion. I can sit on a sofa, have breakfast in bed, sit in the garden.... all things I missed terribly over the last three years or so.

I never expected to be 100%, but 99% will do !! For me, it was a total success.

I don't check the website much any more, but wanted to thank everyone who posted, and of course Jon, for all the support it gave me over the years.

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