Today was supposed to be the beginning of a new chapter in my life.
Today I was supposed to be having my long awaited surgery and feeling hopeful about the future.
Well today didn’t really work out because today my surgery got cancelled and today I’m upset. And mad. Really mad. So I decided today would be a good day to write about my experiences of chronic illness and having adhesions and the effect it has had on my life. Not to receive pity or sympathetic comments, but because in a situation where I feel completely helpless I feel I have to do something. Because anything feels better than nothing right now.
My nightmare started in Feb 2008 when one Saturday night I arrived to play a DJ set at my usual venue. I was feeling a little fragile as two nights previously I had had a rather ‘late night’ shall we say, at a familiar club in Soho with some friends and was still a little wobbly. Because of this, I didn’t take the pelvic pain I was having too seriously. ‘You must look after yourself better’ I was saying to myself. ‘You’re just hungover still – deal with it.’ I was telling myself. But as I climbed the stairs to the DJ booth I knew something was badly wrong. I felt like my insides were about to pop. It was a hot, sharp, burning, pressing feeling. It took my breath away and I had never felt anything like it. But I knew it was something bad. I played it down for a while, telling anyone who asked I was fine. Someone I worked with asked if I was pregnant, knowing perfectly well I wasn’t, and I said what a hilarious idea that was and we joked and laughed about that for a while. By some miracle and with the help of many squats and awkward crouching positions for the duration, I managed to get through my set. I wasn’t happy with the way I played, it wasn’t technically perfect but the equipment was appalling and I could barely stand up so all things considered it was ok. I managed to get home on the bus and the following day I went to a Boy George concert In Croydon with my friend and the whole night I was in so much pain I had to sit down during the show. That was when I knew it was serious! I do NOT stay seated at gigs! Not EVER! (Unless it’s something jazz like or classical or I’m too drunk to stand up) The hours that followed were awful. I couldn’t turn over in bed, I felt like I had a football inside me and if I could have ripped myself open to get it out I would have. In the morning, in extreme pain, I crawled downstairs to the kitchen where I slumped into a plastic garden chair and my cat stood up on his back legs and placed his chin on my knees in sympathy. My then housemate asked ‘shall I call an ambulance?’ to which the answer was of course ‘Yes.’ In the ambulance the medics kept saying ‘it’s your appendix, it’s your appendix’ which didn’t seem right to me. Many hours sat uncomfortably in a wheelchair in A&E followed, doctors dismissing my pain telling me I just needed to pee (seriously?!) or I just had period pain, or most laughably ‘Maybe you just drank too much pepsi.’ After what felt like an eternity I was taken to a ward where I almost punched a nurse right out as she attempted to help me onto the bed. The pain was terrible and I was not in the mood for ‘just get up on the bed now, dear and everything will be fine’
In the morning I was wheeled down to theatre for surgery where they discovered a huge chocolate cyst the size of a football on my right ovary. It was so big it literally had nowhere to go any more. I also had a smaller orange sized cyst nearby which also had to come out. They were too big to remove laparoscopically so they had to be removed by open surgery. I hadn’t experienced anything like this before so it was all a bit of a blur. I was aware I had put on some weight recently but I just thought I needed to cut down on my beer and stuff. It never occurred to me I had cysts inside. I woke from the anaesthetic talking absolute rubbish and begging for pain relief. Later that day the surgeon came to see me in the ward. ‘You have severe endometriosis and we need to monitor your recovery for a while.’
One week later I was allowed home (in pain and cursing every step I had to walk down to to the taxi which took me home) where I completely underestimated how intense my pain would be. Walking down stairs hurt a lot and on attempting to take some parcels to the post office the following week I thought my insides were gong to burst out. One week later I was back in hospital because my wound would not heal. Every time I stood up, loads of yellow looking fluid poured out. The doctor decided it had not healed properly and I was ordered to return to the ward every day to have the wound packed out until it had healed from the inside.
And then things were pretty much ok for a while. I was back in the gym after 5 weeks. (yeah I know they say 6 but I couldn’t wait any longer) My periods were still seriously bad though but that wasn’t a new thing. Even before I was told I had endometriosis I suspected it. The pain started when I was 12. My mum wrote a letter to my form teacher at school every month explaining that I was off school because my periods were painful, and on my return, as she opened and read the letter, my teacher, in between flicking her brown hair and occasionally spitting on the table, in her Manchester accent would say every time ‘I don’t understand why you have to be off school every time you have your period, Katie. None of the other girls do.’
A couple of years later things didn’t feel quite right. I started to notice that every time I ate food, my stomach would bloat up like a balloon. I felt huge after just a few mouthfuls. But again because my job and my lifestyle involved socialising a lot I thought ‘Maybe I just had one glass of wine too many last night’ This went on for a few years. I kept telling myself that when I got back in the gym and started taking care of myself more these things would improve. I blamed myself for these symptoms and promised myself that I would finally sort myself out and become more healthy. I threw myself into my touring and DJing work because that made me happy and it took my mind off the other things that were happening in my life. I was really starting to get somewhere with it all and I felt like the hard work was starting to pay off. There were a few things I couldn’t explain like the extreme tiredness I experienced after food that would send me to sleep for hours or the terrible stomach pain that wouldn’t ease up but I ignored these things as much as i could because I wanted to get on with things. I threw myself into the gym again, spending an hour every morning on the rowing machine and then going back in the evening for a swim or to a class. I was determined to get fit properly.
At the end of 2012 I knew something was wrong again. Every time I ate any food at all I was knocked out. I had to lay down for ages after. It was a tiredness noone I knew could understand. Friends kept making comments like ‘oh well it could be worse’ or ‘you’ll just have to put up with it’ but that wasn’t helpful. Then the nausea started. Every day when I got up I had to be sick or at least try to. It made no sense at all. I wasn’t doing anything differently so why was I feeling like this? My stomach was huge. I would arrive at venues for gigs and go straight to the toilet to be sick before I had even taken my coat off. I couldn’t work out any more because the nausea was so bad. I had UTI after UTI and I just felt dreadful. Every time I had my period I would be in bed for days and then after that I would have inflammation that would travel up to my rib area for weeks and was very painful. I saw a gynaecologist at the local hospital who eventually referred me for surgery. On the day of the referral I walked into her room in terrible pain and with a shocking migraine and simply said ‘please help me’
So in Feb 2013 I had a diagnostic laparoscopy which showed multiple adhesions in the pelvic area and and several loops of bowel firmly twisted and adhered to my abdominal wall. When I woke up from my surgery i was told there were no nurses or doctors available to come and talk to me about my operation so i would have to go home and call the hospital the following week and ask what happened during surgery. ‘Sorry’ I said ‘but that just isn’t good enough.’ So eventually a nurse came, with coat and scarf on, ready to go home and not really interested in talking to me. She explained the loops of bowel were not separated because the gynaecology department ‘do not deal with bowels.’ So I then had to be referred by my GP to another department to see a consultant about my bowel adhesions. Three months later and still in severe pain I saw a consultant who dismissively sat back in his chair and rubbed his cheek and said ‘well maybe we will just leave it the way it is.’ By this stage I was only able to digest liquid foods so I was furious. A CT scan followed which I had to wait weeks for the results of, and finally I convinced him to refer me for surgery to separate the bowel adhesions. On the day of my surgery the surgeon who I had never met before said ‘oh hello we met before didn’t we?’ I had absolutely never met him before ever. ‘don’t talk to me’ he said ‘and don’t bother to tell me where your pain is because I will see when I look inside.’ This was at 7am. At 1.30pm I was still in the waiting room waiting to go down for surgery and I was horribly dehydrated and my painkillers had worn off.
The surgery happened and I was allowed to go home next day. ‘Great!’ I thought. I was ready to get on with my life. I had an amazing two weeks after my recovery going out for meals and socialising and feeling great. And then the pain came….
Exactly one month after my surgery I was taken back into hospital. I was out of breath and I had the worst pain ever under both ribs and all down my right side. I couldn’t cope any more. I wanted someone to come and take all this pain away so i could get on with things. Many tests followed, none of which were particularly relevant. A CT of the chest just in case I had a blood clot? My pain was not in my chest! I had a vaginal ultrasound which showed a tiny 2cm cyst on my right ovary. I had a gastroscopy which showed severe inflammation and a colonoscopy which showed ulcers in my large intestine. But of course, I already knew that because I was bleeding. Many doctors came to my bedside, on one occasion 8 doctors arrived at once which was extremely humiliating. ‘We have come to the conclusion’ they said ‘that this tiny 2cm cyst is the cause of all your troubles.’ ‘Also you have severe adhesions again.’ ‘and take painkillers for your ulcers’ I was so furious I had a bit of a strop and pulled my bedcovers over my face and refused to speak to them any more.
‘What can be done about this pain?’ I asked them later.
‘Nothing’ the surgeon quipped. ‘Take some paracetamol’
The night that followed was the worst. The pain was so bad I just wanted out. It was too much and the nurses on the ward had already told me that they were too busy to attend to me and not to press the buzzer if I was in pain. In all my 36 years and of all the difficult things I have experienced in my life I can honestly say that was the worst week of my life.
I left the hospital still in pain and disgusted. I then started the long painful procedure of getting referred to a different hospital. That was in August. I made many trips to A&E in desperation begging for pain relief. I also had acupuncture and saw a nutritionalist in the hope of improving my general wellbeing. I just had to do something. This didn’t work out because every time I ate I would feel extremely unwell and in September we mutually agreed that my condition was so severe that those treatments could not help me and I was devastated. I had tried so hard and put all of my energy into making myself better and it still hadn’t worked. I just didn’t know where to turn and I felt really alone. In November I saw a consultant who miraculously said ‘ we have to do surgery again because we have no choice’ Unfortunately his referral went missing in the hospital computer system so two months later I paid for a private consultation with the surgeon I was referred to. In January he put me back on his NHS list on the condition that ‘we do more tests’
Two MRI scans followed and several months went by before I could see him again. ‘Nothing shows up on your scans’ he said. Of course they don’t doctor! Adhesions don’t really show up on scans! We ALL know this! ‘I think some of your organs may have fused together but it’s pointless separating them because it will happen again.’ Eventually, after many arguments and a complaint made by me against the hospital he referred me for surgery which has now been cancelled and no further date scheduled as yet.
I just want my life back. My bowels now work slightly better than they did before the last surgery which is amazing but the pain in my abdomen is shocking. I can’t eat anything without pain and my quality of life, my relationships and my work is suffering. I am on Codeine and Tramadol and Tapentadol and Buprenorphine which sometimes helps but mainly makes me sleep too much and leaves me feeling like a complete zombie when I would rather be out with friends. I am trying to work still but it is not always possible. The only time my pain is reduced is when there is no food in my body at all. I will continue to do my best and that is all I can do. I know my adhesions will come back after the next surgery and my life will never be the same but I am ready to try one more time. I am still a real person with real feelings. The worst thing is that I could not have done anything to stop this happening to me and that seems unfair. I have achieved many things in my life and I hope to continue to do so and right now anything I can do to help raise awareness of this awful thing is worth doing. I hate not being out there DJing every weekend and as soon as I can get this under control a bit more I will do my best to get back to it.
If I could say anything to those who have no knowledge of adhesions?
If you don’t know what they are or how they affect people’s lives – don’t ask me ‘Are you feeling any better yet?’ or ‘Are you STILL ill?’ Those comments infuriate me so much. If you want to know how this thing affects people – please do not just look at me with a blank face when I try to explain – Look it up. Please do not doubt my pain because one day it could happen to you. If you are lucky enough to be able to go about your day and eat without pain please do not ever take that for granted, even if it’s just a piece of toast before work or a plate of chips in a service station on the way to a gig. Not even for one day. Incurable means incurable. If you see me out and about it is because I am trying my best to be normal. It does not mean I am ‘better’ or not in pain. It means I am finding the strength to get through my day the best I can and I am extremely proud of the way that I am doing that. I don’t tell people how bad things are sometimes because people are busy and quite frankly nobody wants to hear it. Since I’ve been ill many of my friends have vanished. I no longer have the energy to keep making the effort that I once did and I have had to accept the way that things are.
Oh! That ‘absolute nonsense’ thing that I said when I woke up from my first surgery in 2008 was actually ‘I’ve got to go to work! I’m VERY important you know!’ (whoops that’s anaesthetic for you!) Well maybe I will remind the surgeon of that next time. If it ever gets done that is!
Guest Post: Kate Way