I guess the story has to start somewhere, so here’s a little more following on from the “about me” page….
Firstly, whatever physical or mental symptoms you have it is very important that you get them checked out by a Doctor. There could be something serious going on and it is important that potential causes are ruled in or out as soon as possible.
The research I started doing was focused on those conditions which the medical world say there is no known cure. That should actually be re-phrased to say “no known cure with surgery or drugs” in my opinion.
Secondly, don’t let the white coat syndrome get to you. We’ve all been brought up with the understanding that when you are ill you go to the Doctor and he/she will tell you what is wrong with you and what medicine you need to take etc. We rarely question their authority or knowledge and assume that with all of their medical training they know exactly what is wrong with us.
With my situation the alarm bells eventually started ringing. Everything seemed vague and there were a lot of unknowns. The following is an extract from an official medical document;
“There is no gold standard for the diagnosis of interstitial cystitis; rather, it is a diagnosis of exclusion. It is impossible to provide a purely evidence-based treatment strategy, but review of available evidence suggests that conservative supportive therapy (including diet modification); oral treatment with pentosan polysulfate, amitriptyline, hydroxyzine, or cimetidine; and intravesical treatments with heparinoids, dimethyl sulfoxide, alkalized lidocaine, or bacille Calmette-Guérin may be effective in some patients.”
No standard diagnosis, no treatment strategy and a list of drugs that “may” be effective in some patients.
I genuinely believed I had a disease and had to try all of these different medications to find one that worked for me. I was also told that they could only treat the symptoms because there was no known cure. To top it all off I was told that over time it would get worse.
Then the tipping point, my final appointment with the Consultant Urologist. I was at my wits end, in pain and spiralling into deep depression. It is at this point that I was offered the next stage of the experimental treatment process……. surgical removal the bladder !!
I was in shock, lost for words, but I knew this wasn’t how my story ended. I don’t know how but I just knew. I acknowledged the Consultants years of medical training and experience but told him word for word, “I know my body better than you do, I’m going to figure this out myself”.
I never saw the Consultant Urologist again.
This is the last time I will mention that diagnosis because I am 100% certain that there is nothing physically wrong with me. None of the tests have ever found anything and my research proves I am right.
I trust my gut feelings all of the time now and they have never let me down.
Just a Thought 