The first time I went to see a Doctor about my bowel it was 1993, and I was almost 14. I had been experiencing agonising pain, bloating, and so on and so forth. My doctor quickly dismissed me as having Irritable Bowel Syndrome (IBS) and so began twenty years of negotiation with GP’s about how ill I really was.
Over the years I was given various medications, none of which worked, some of which made things worse. One, Peppermint Capsules, would actually leave me feeling like my insides were being burned so bad I would collapse in tears after taking a capsule, unsure how to get through the next few hours. In the end I stopped taking any medications I was given deciding nothing was better than what I was being given.
Over the years my symptoms got worse and my general health with it, developing severe depression and a mood disorder which was likened to bipolar, acne in my late twenties, migraines, a cerebral atrophy, a strange rash which comes and goes at will. Along with catching anything and everything going.
I’ve spent weeks at a time in hospital because normal pain medication can’t manage my pain, and still was told by GP’s I only had IBS and to get on with my life.
I was also told by one GP to “stop wasting his time, it was all in my head”
After twenty years of agonising suffering I finally saw a GP who listened to me and agreed to refer me to a specialist, this was a year ago now.
I now know one year and 7 tests on that I have an allergy to gluten but there is also something else going on. They thought. I had Crohns or Colitis but yesterday a month after the tests were done and after multiple phone calls chasing the results, these were ruled out.
I now have to have more tests while they go down different avenues as my consultant is convinced I do have something wrong.
The problem is that being British and being under the NHS means that you have one test, then it takes 4 weeks for the results to get back to the consultant, then it takes them a week at least to review them and decide next steps. I have been doing this dance for a year now and I am getting sicker, I can’t even walk to my local shops 5 mins away any more. I have had to stop working and all because the NHS works at a snails pace.
So why does good news become bad news? For me I need a diagnosis, I need to know what is wrong and start treatment so that I can get well and get working so that my life stops falling apart around me.
Finding out that the test results were normal yesterday should have been good news. But to me it was heartbreaking because I know I have at least another two months now before I get the next set of test results, given I don’t even have an appointment yet. Which is two more months I’m not working, two more months I’m getting sicker, two more months I can’t pay my rent.
I want my life back, and I want to know why it took me twenty years to get to this point and why it has to take over a year to get a diagnosis once I do get to this point?