BACK Foundation, Inc.
A 501(c)(3) non-profit corporation

Face Of Pain - Kate's Story

I'm 22 years old and for the past two years I've been living with a painful condition which affects my pelvis, called Osteitis Pubis.

I have always been a very active person, known at school for doing sports whenever I could including hockey, swimming, netball and athletics. I would injure myself frequently but nothing which I couldn't overcome. Then one morning in my final year at University I went to the gym before my lectures and after the work out noticed a swelling across the front of my pelvis (directly over the pubic symphysis joint). Throughout the day it became gradually more painful and the swelling became more pronounced, affecting my walking. I was admitted to hospital through A&E and spent almost 2 weeks having MRI scans, CT scans, X-rays and blood tests. I was diagnosed with Pubic Symphysis Dysfunction and was informed that some mild analgesia, rest and physiotherapy would be all that was required to sort out the problem.

I was very cautious over the next 4 months doing as little exercise as I could (being a Student in a big city, a certain amount of walking was inevitable on a daily basis), but 4 months into the academic year I was showing clear signs of deterioration, the pain increasing and on some days leaving me housebound unable to get to lectures. I seriously struggled with walking and trying to climb stairs was becoming impossible. My physio gave me crutches and suggested I start wearing a pelvic girdle support belt. These made getting around a little easier for me (I could last longer with the aids) but the pain didn't reduce. By the end of my second semester, I had missed many lectures and was seriously behind with my various pieces of coursework/dissertation and hadn't even started revision for my finals. The University, my doctors and my family all agreed it would be best to interrupt my studies for a year to give me time to go through treatment and (hopefully) recover.

However, I continued to deteriorate until finally (9 months after the first sign of my symptoms) my mobility was so painful and limited I had to start using a wheelchair when I was able to leave my bed. I'd have stabbing pains inside the joint itself whenever I walked, shooting pains down the inside of my leg and round towards my hip and if I didn't move I'd still have a constant ache around my pelvis. Sometimes the pain was so bad I would struggle to stay conscious. My medicines were increased to include some strong highly addictive painkillers and I know that they changed me but at the time they were necessary. My family moved my bed to the downstairs room so I could avoid using stairs as much as possible, though since the bathrooms were upstairs when I needed to shower I would have to sit on each step and use my upper body to lift myself onto the step above. I was diagnosed with depression not long after becoming confined to the wheelchair a common occurrence, so I was told, when someone goes through such a dramatic change in their life. I was dependent on everyone around me for even the smallest things like getting out of bed, making a cup of tea, things I'd never thought about before and just done out of routine. I hated it all and hated myself, my body for not being able to make it right. I also found that I lost a great deal of friends, only a couple making the effort to come and visit me. When I did go out, general strangers were extremely thoughtless and unkind, making jokes and sarcastic comments or feeling the 'right' to impose themselves on me by demanding to know what I'd done to myself. I experienced women refusing to put their child's push chair out of the way to make space for me in the wheelchair and people taking control of the wheelchair even when I was wheeling it myself. I had some doctors telling me that there was nothing wrong or that I 'just needed to get out of the wheelchair' (like I'd chosen to be in a wheelchair). What people who haven't lived with pain don't realise is that there is a whole culture and etiquette surrounding people living with certain disabilities (including pain), which more often than not, makes the person feel worse even when this was not the intention. As if dealing with the pain isn't enough!

Luckily, I was referred to an Orthopaedic surgeon who finally diagnosed my condition as Osteitis Pubis. He started me on a series of cortisone injections and referred me to a bone doctor for some pamidronate infusions. While these would both help the pain briefly, there was no long term help so he referred me to a ligament specialist. It was discovered I had ruptured the inguinal ligament and torn two others. Surgery on these ligaments finally saw me get out of the wheelchair and for a short while I was also off crutches. Psychologically, I improved dramatically after coming out of the wheelchair. I gained a lot of my independence back and the shooting pain (from the ligaments) had completely gone. But with the increased walking, the sharp stabbing pains and the constant ache were becoming more intense again so, yet again, I went back onto crutches.

Four months after my surgery, I decided to return to Univeristy to sit my exams and finish the outstanding work despite not being pain free, since I'd already been away from my studies for a full year. I came off the strong painkillers slowly so that I would be able to sit the exams with a clear mind relying on my anti-inflammatories and some softer pain killers only along with my frequent use of ice packs. Amazingly, I was able to sit all of my exams and submit all my work on time and achieved a solid 2.1 for my final grade. I had a great deal of support from my University through the process of applying for specialised exam provisions (including the ability to use my ice packs, to take breaks, to walk around) and it was an extremely stressful few months with the amount of sitting I had to do (one of my exams was 3 and a half hours long), but somehow I've come out the other side and I feel like I've achieved so much! Now I am looking for jobs and have a couple of opportunities I can explore, which is hugely exciting!

As for my health, my surgeon presented me to a clinic of doctors, radiologists and physios for advice on what to do next. As a result, we are about to start a new treatment to see if it helps. Some days, the pain is still completely debilitating, stairs remain my nemeses and I still parade around with the extremely fashionable black support belt (and a secret tubigrip bandage under my clothes for extra support) and silver crutches. But I have come on an incredible journey, one which feels like a nightmare I've made up in my mind and only going through the documentation, the 'pain' diary I have kept, and the photos do I realise that it was no dream.

Without a doubt I am a much stronger person than I was before the condition started and I have learnt how to deal with so much psychologically and physically. I no longer focus on the friends who let me down when I most needed them, but those who kept trying to put a smile on my face, and my family who have provided constant support, and the friends I have made on this site. This site saved me during my darkest time, I don't know what I would have done without it! I deal with pain each day with a positive attitude, which is something I couldn't even comprehend two years ago. I still deal with stupid comments from strangers and acquaintances alike, but I know how to deal with them now and due to a group of accepting and supportive friends I feel comfortable with my condition.

At only 22 years old, I have spent 2 years in pain, 7 months in a wheelchair, 2 months bed bound, and a total of 10 months on crutches (ongoing). While I may not be able to remember what it's like to live without pain, pain is no longer controlling my life and I intend to continue fighting to ensure it never does again! I don't know if I'll ever come off crutches, but I now know that I can still live!

This was taken of me the minute I walked out of my final exam - met by my family