Well it was in October 2006 and I did a very silly thing. I stepped on a very slippery ramp. It was wet and I put one foot on it and went over the side. And I ended up with broken wrist. I broke the ulna and the radial bone. So I was in plaster, obviously for a few weeks and fortunately I have an excellent doctor who actually called me a month later and asked me to go down to the surgery because she felt that that I should have a DXA scan.

So I went down to see her and she was going to arrange the DXA scan but she said obviously that might take three months. So in the meantime she prescribed the Adcal D3, which is the calcium medication and also Bonviva which is the ibandronic acid. And she said,The reason I’m prescribing this is because the DXA may take three months and you may not have osteoporosis but if you do at least we’re three months’ ahead with the medication

So I appreciated the fact that she took that much interest following a fracture. And at the time I was quite confident that I did not have osteoporosis. I felt as fit as a fiddle. I was very active. I could lift extremely heavy things. I have concrete garden ornaments and I could lift those and they were extremely heavy. So I felt, well, yeah I’ll take the medication and I’ll have the DXA but I know I’m fine.

So in, I didn’t have the, the DXA scan till, I think it was January and then I had to wait for the results. And the results came through March 3rd 2007. And I went to see my doctor and she gave me this news that I had osteoporosis. And I was absolutely devastated.

My own experience is because I have been semi-paralysed for twenty -three years and, as I have learned fairly recently, long-term lack of mobility in limbs leads to osteoporosis. And after falling over many times and breaking many bones. Various people said to me, Have you thought about the fact that you probably have osteoporosis

Well I had been falling over and breaking different bones for a very long time. But it was only about four or five years ago that somebody said to me could this be osteoporosis.

Was this a medical doctor who said that to you?

It was a nurse. This was after I had broken another bit of me and a particularly useful bit because I broke my good wrist by standing up and falling back and sitting on it. And since my other wrist doesn’t work at all that meant I was helpless. So they put me into the community hospital in [city]. And it was there that one of the nurses said, Do you think this could be osteoporosis because it is such a long number of years that you have not been using your various limbs. And that always leads to weakening of the bones

I asked for a test, for bone density test. And that is the one I had, I think at the [hospital but I cannot be absolutely sure because I have been to too many hospitals and I forget which one is which. And they said yes it looked as if there was some osteoporosis and that is when I started taking calcium and then alendronic acid.

Came back home, went to the fracture clinic and they said the same, There is not a thing we can do for you, it is going to be painkillers. We can’t set it. We can’t do anything. Because it was broken here and it was broken here

So then I went just for six weeks I think it was, backwards and forwards to the fracture clinic and they x-rayed it regularly and everything and I then went into physiotherapy for about twelve weeks after that.

Nothing was mentioned to me, at that time, about osteoporosis, my age, anything, this was purely all about me, and the fall. I had left work. When I

I got a letter out of the blue, I think it was in March from a [specialist osteoporosis nurse], and she was something to do with the Rheumatoid Department. And she just sent me, I think it was a letter or a phone call, saying, I understand that you’ve had a break recently, and it is my job to go through, you know, the records, to see why people, you know, and to see women your age, to see you know, why they have breaks and everything else And she said, I wonder if we could invite you in for a DXA scan. Just to see just because the damage that you sustained on a trip and fall was quite severe, you know, for someone your age

And so we made an appointment and I went in and I had the DXA scan, which revealed that one hip was osteopenic, but one was osteoporotic. That is the way it was explained to me. Whether I’m saying this right or not, you’ll have to pick the bones out of that. But that’s the way it was explained to me.

And she took, when we got the results of that, she then took a complete battery of tests, of blood tests, of absolutely everything.

The story starts just over a year ago, August last year, when I discovered a lump in my left breast, about three to four centimetres across. I only realised it because it was rubbing into my t-shirt when I was running to, for an appointment, and yeah this was a bit of concern to me, and it happened my girlfriend had once you know had a friend who, a male friend who died of breast cancer. So I knew that men could get it. So I went straight to my GP after that and then she sort of referred me to the breast clinic. And anyway it came out all clear. Had the very, the needle aspiration and the ultrasound, it was clear, but they, they requested blood tests you know to find out how the, how the, how it happened. And you know and asked me to see my GP, they wouldn’t let me have the results.

My GP, the first thing she did was to repeat the blood tests, which showed exactly the same. And in the meantime we found there was nothing else abnormal in you know in all the other, all the other things seemed to be okay. You know it was just the particular, particular hormones, so she referred my results to an endocrinologist. And who might have been Professor [name], I don’t know, in city. And then he was you know asked to get, to get more tests, but also they referred me for a bone scan. It had been decided by this, in the meantime that I had mentioned that my mother had had Osteoporosis, for you know quite a number of years, and so you know there wasn’t, and the endocrinologist just thought that it was a possibility that the low-ish testosterone could give me a risk of, you know, of Osteoporosis in later life, because if anybody had thought there would be a problem now, my GP certainly didn’t. He just thought the, he was being very cautious. But I had the bone scan, and that meant I did have Osteoporosis. I think it was osteopenia I think in the, in the hip, but it was Osteoporosis in the spine. And as a result of that they were getting more blood tests and I ended up seeing Professor [name].

And he said well it was only mild Osteoporosis, he said there is nothing, he thought it was probably mainly hereditary, given my mother’s history, but also probably exacerbated by the low-ish testosterone.

Well my back pain goes back to the beginning of last year perhaps if I’d stopped to think about it just before Christmas the year before so that was in 2006. I saw my doctor, Doctor [name], and he didn’t seem to attach any great urgency to it so I had to go back to him later because I’d had correspondence with the hospital and they said my case wasn’t urgent. It said it would be some weeks before I could be assessed and possibly have an MRI scan. I had to go back to him to say that the condition was not comfortable. And then unfortunately we have an accident in the house with the plumber and he did a lot of spilling of, of the fluid when he drained the radiators.

Well, that entailed a lot of packing up from the rooms that were affected and getting rid of quite a lot of stuff. And that put a strain on my back and that’s when things deteriorated very noticeably.

It wasn’t until the November that I then got another call from the hospital to go back for an MRI scan.

By that stage I was in a lot of difficulty getting in and out of bed was very difficult, my back was going into spasm, getting in and out of bed, getting up from a chair was just as difficult sometimes. And it was then that they realised that there was a more serious problem and the assessor sent my name to Mr [consultant’s name] for his assessment. And then from the MRI scan which I had a collapsed vertebrae was diagnosed.I went into hospital in April for two collapsed vertebrae.

We had no facility for that in our area. My doctor said he didn’t even know anything about it. Bearing in mind we are talking something like fourteen years ago when the knowledge of osteoporosis in general practice was nothing like what it is now.

It took me a year of persisting with my GP that I wanted to have this DXA scan. We discovered that the nearest facility offering this was about eighty miles away and would require crossing the border into the north of England.

Eventually at the end of turning up in his surgery time after time asking to have a DXA scan he said, Oh for goodness sake. Go and have one. I am sick of hearing about a DXA. You go and find out about it and tell me what it’s all about

So I went and had this DXA scan and was seen by a consultant who informed me that my bone density particularly in my spine was really quite bad for my age. One of my vertebra had a T-score of minus 4.5 I think it was which at the age of 58 was really quite, by now I think I was 59, this was really quite severe. And his words to me were, If we don’t get you treated by the age of 70 you will be in a wheelchair because your bones are already those of a woman in her mid seventies to eighty

I saw an advertisement for ladies who had had falls, fractures in their middle age, and would they like to be tested for osteoporosis? So I went along, had a test, had a DXA scan and discovered that I had osteoporosis. Which was a bit of a surprise to me. It was the first time I knew it. But I had had several fractures in my wrists as I was fall, falling over. I’m a bit prone to falling over. And I did a trial. That was when I was 55. So I’ve had it now six years.

And I didn’t, after the test, nobody told my GP. So I was a bit unfortunate. I still kept falling over and having more accidents, until last year I fell off a ladder. And I was in such agony I thought I was dying. I had it right across my spine, between my shoulder blades. I went to hospital in a taxi and I was crying all the way there with the taxi going over bumps. I just felt like a real old lady. When I got to the hospital, the doctor checked my, just checked my chest and said he couldn’t hear any crackling going on. He didn’t think I had anything fractured. But I was sure I had because I was, it took me months and months to recover from it, with no treatment whatsoever. They didn’t tell my doctor. And then this January, that was just over a year a-, afterwards, I then managed to fall out of bed. I woke up feeling a bit of a, dazed, to turn the alarm clock off, and I fell straight onto where I’d fallen before. I had to go to the doctor this time because I, it was exactly the same feeling with the pain, absolute agony. And the GP diagnosed it then. I had osteoporosis and fractured two of my spine. Which I’d done before. I’d, I just had no idea I’d fractured it, not officially anyway

What I’m trying to understand is whether they told you that they were going to pass the information to your GP.

They did, yes, they did say they were going to. And when I asked, I went to the GP about some, I can’t remember, probably the first fall, I can’t remember now, and asked if she’d ever heard from them, she, she looked through her papers and she said, No, nothing here And I wasn’t able to tell her what I’d been taking or what, what on earth it was about, because I didn’t have any details.

How do you feel about that?

I’d, I feel a bit bitter. Because I’m very easy-going and I’d never complain officially. But I mean inside I do feel that I’ve been sidelined. Somebody’s got it in for me. No, it’s… I feel that perhaps something could have helped me in the past and I wouldn’t have had to have, you know, to strengthen my bones, and I wouldn’t have gone through it, all this pain.

With all these back problems that you have had over the years, did you go to the doctor’s?

No, I didn’t, for the simple reason that I thought, Well, what can they do I, I know what happened, yes, I’m just thinking about it again. The very first time I had was, [daughter] now 53, she was about 4, so literally that would be about 1960, about roughly 1960. And we’d just moved into this house, we hadn’t been in there that long. And I went upstairs and the bathroom was in front, and I went to go into the bathroom and I must have gone like that, twisted a bit. And that was the very first time ever. And I went on the floor. My husband was downstairs, we had a downstairs, there was a downstairs loo as well. And he was banging the toilet roll holder, banging. So the noise, you know, he couldn’t hear. And I screamed out because I’d never experienced anything like it before. And he heard, eventually he heard and come tearing up the stairs. And it was on a Sunday, he wasn’t at work, you know, and it was definitely, I’m sure it was either a Saturday or a Sunday. And I thought I was paralysed. I just couldn’t get up. Anyway he managed to get me up and get me on to the bed, and he rang the doctor. And the doctor came up and he said, O he said, a slipped disc, you know, a s-, it’s definitely a slipped dis he said, and the only thing you can do is to lay in bed, you know, and have painkillers, you know And so after that when my back did go I thought, Well, that’s the only thing I can do then. I’m not going to be able to do anything. You know, I’ll just have to lay in bed and take pain- And that’s where all, I think it all stemmed from. So I didn’t used to go to the doctor’s.

Do you remember how old were you at the time?

Yes, I can work it out. I was 25 when I had [daughter], so 25 when I had [daughter] and she was about 4. About 29, roughly, you know, 29, 28 to 30 sort of thing, about that sort of age, yes. And that was the first time that, with the exception of, when I was 17 I broke my wrist, you know, about that.

So from the age of 29 you started having these problems?

Oh, yes, yes.

Well my mum, my grandma and my aunt all had osteoporosis. And I remember being quite, fairly concerned about it but being told by the GP that I saw that I was a lot taller and a different frame to my mum and obviously medically things had moved on quite a lot. And so didn’t really pay much issue to it. Hurt my neck doing snowboarding. Didn’t get anything done about it for about two years and then, and then went to a GP who x-rayed me and found out that I had a compression fracture in my neck. And so at that point I think I was about 34 and I wanted a DXA scan, but I was too young to get one. So I just couldn’t get one.

I think the theory is that you’re not at risk really, at that age. And you can’t, you, I think pain’s personal so when people, you know, you can cut your finger and say you’re in a lot of pain, and when you say you’re in a lot of pain because of your neck, people will just think, Yeah, low level pain threshold here So, they can’t see the actual level of pain in your neck.

And then about, literally about three hours after I first give milk I tried to reach for something and then there was a massive pain in my back. And then I couldn’t move. And then it all got a bit hilarious for the next six weeks and the fact that, even though I couldn’t move then, I still got shouted at by midwives who said I hadn’t changed my baby and it was just literally, there was no-one to ask for help. And I couldn’t move. And to think, through the pregnancy bit everybody just thought I was I had a low pain threshold. And so it all got a bit kind of traumatic in my head.

And so I got given a Zimmer frame to get home from the hospital. And then just had this series of just falling down, but not being able to move at all. And, and being in the most horrific pain considering I’d just had a baby, which was no pain. And ended up in Accident and Emergency a couple of times and just told to go home and get a life. And just sent to home on my own in order to walk out of the hospital. And falling down in reception and being just to left lying on the floor. And just classically being treated as being some kind of nutter parent whod has got post-natal depression or something.

And so that went on for six weeks. And then eventually went to stay with a friend and the same thing happened. And luckily my friend isn’t, isn’t me and she’s quite a little Jack Russell and wouldn’t let me leave until there’d been another, some, another doctor coming to see me. And then took my x-rays up to I think the spinal ward and then they were describing me and they said something about a baby and they, they went, Oh no. These are the, these are x-rays from an old woman And so then everything fell into place. As I say, it’s still, even now it still makes me really, just upset to think about it.

And then I saw a doctor, a professor there. And then about, he took some bloods and then about a week later the results came back that I had osteoporosis through pregnancy but also undiagnosed coeliac. Which the coeliac disease would have caused the osteoporosis really.

I suppose it does make me upset because it was kind of like it can, you know, it was six years ago now, so, but it can still catch. Probably because I think if anyone has got, has got a fracture of their spine, which is like the central part of your body, then I think that you’ll know the, the pain that I’m talking about really. And to have multiple of that pain and yet still be classified as making it up in hospital and by your ambulance driver who thrusts you up off the floor and doesn’t protect you because you don’t look, all you’ve done is you’ve stepped out of a bath and fallen over and haven’t done anything. So nothing adds up really. So all, I suppose it all looks fake. Especially when you’re young.

And so I feel as, I understand but also feel let down by the system. And, and it was quite horrific and the probably whole of what should have been like the best time of my life having a new little baby and being quite proud and showy offy just become some, some horrific nightmare that just kept going on and on and on. And even to the point where I’m quite sure that people around me, including my partner, thought I was making it all up. And I know my friends thought possibly all post-natal depression.

When he saw the extent of the damage to my spine he thought perhaps, you know, that the, the. He said my spine was literally rocking and you know, needed some bolting up. Was his words, you know, needed securing immediately.

So I was admitted into hospital. And during the consultation myself and my wife were there and he said, the surgeon explained the operation. He said’ I’m going to borrow a rib. And I’m going to, you know, I’m going to collapse your lung and I’m going to do a. You know, and it sounded like a walk in the park. It didn’t sound like a serious operation to me but it’s something called a vertebrectomy and a thorocotomy, about a six and a half hour operation.

He’s a consultant spinal surgeon, an orthopaedic spinal surgeon. And he’s quite eminent in his role. He looked at the scans and immediately looked at a way of constructing support and in removing the damaged bone. I think there was 25% of my vertebrae left. So he wanted to take that away and then put this cage in. Unfortunately what he succeeded in doing is bolting it to osteoporotic bone above and an osteoporotic bone below so he. Subsequently what’s happened sort of four years down the line is that it. Basically they, my bones have now the cage has collapsed into the bones. So basically all that work is. That’s what causes me so much pain. Is that the cage is now sort of sunk into these osteoporotic bones because the bones were hollow to start with they couldn’t support the cage. But I’ve been told that it’s too risky to undo that work now. So it’s something I’m left with.

He didn’t mention osteoporosis and what’s quite ironic is that two miles up the road from this particular hospital there’s a density scanner, a DXA scanner. And had I gone one route I’m sure I wouldn’t have had the operation. Who knows. But it was quite, quite amazing really that you know I was in the course of the few months after the… I didn’t see my GP that often but I did see an orthopaedic surgeon and a spinal orthopaedic surgeon. And nobody thought about osteoporosis which I think is quite scary really. You know it’s, I think given my symptoms and yes it’s similar to multiple myeloma but you know I think osteoporosis should have been a factor. And given that I was talking to bone specialists I would have thought that would have come into the equation. And had it done earlier I’m sure that. I’m convinced probably I would never have had the operation. Who knows, I’m not a medical person.

I feel there was a point, there was a time when part of my problem about being depressed was, was trying to find an answer and I felt robbed. I felt as if I, you know, I should have the answer and somebody should have explained to me why I had this terrible operation. And there was a time when I felt, I almost felt like I wanted to claim medically and say, you know, I’ve been robbed and I, you know, this has been a misdiagnosis and everything else. And I realised how complicated those issues are. But one of the things that was identified was I was clinging to something. I wanted the surgeon to tell me why he operated and to tell me why he didn’t look at osteoporosis first of all. And I was told, you know, literally to let go of that because it was, I think, a burning desire that wasn’t healthy. And I can appreciate that but, but I feel quite, quite amazed really I think is the word. I think it’s gone past anger now. I think I was angry at one stage and really the anger wasn’t healthy. But you know, in a sense I felt angry because, because somebody should have known this was osteoporosis and it could have avoided so much more.

I find the ignorance with GPs even orthopaedic surgeons if you like, the ignorance of osteoporosis I’d like to think it’s not that bad now but it’s still out there. You know, it’s amazing the lack of knowledge. You know my GP asks me what’s going on, what the news is on osteoporosis which is quite scary really but I understand they are general practitioners but, you know, it’s… There’s a lot of, there’s a lot of ignorance out there [laugh].