Diary Enter: Valeria's Story pt. II

I have had BPS for over three years now and I am so fed up with it. It made my life, my lifestyle my everyday upside down in the worst possible way. At first, I thought little of it but I guess I am not the only one.

Nothing special, a UTI, it happens. A few weeks later I became suspicious that it could be something more. If it was a simple UTI, why has it not improved after treating it with antibiotics? What’s more, why is it getting even worse?

Several months and antibiotic treatments later occurred to me, something deeper could be the reason behind all of that, since nothing seemed to help. Urgency, frequency, and having to stand up every night on several occasions. Pressure, discomfort, pain! Still, I was calm, because the doctors reassured me. However, if it was something more complex, something worse, they would panic, or at least seem more concerned, but no! So, I stayed calm myself.

The pressure and discomfort make sure that you will not forget about your misery any minute. The urgency makes you understand, you do not control a thing in your life. Traffic jam? Queuing? Driving long distances? Events? Going to the cinema, to the theatre? Nothing brings you joy, because you fear, you cannot hold it back. Like a child, not an adult. A complete loss of control regarding basic human activities.

I’ve heard multiple times from therapists: everything is just in your head! Then it turns out at least ten times that it is not a UTI. I must be out of my mind then, no bacteria, no clue, still having serious symptoms. But wait a little, if it was never a UTI, why did I get all the different antibiotic prescriptions from doctors dozens of times? Did I ruin my own body and immune system for nothing? Not only did they not help me, but they harmed me. Great!

Could it be that doctors are wrong about my diagnosis and might have mistreated me? After numerous visits to different specialists and countless examinations and negative tests, you start giving up. Then you think, that was it. No need to fight any longer, you give up. You start experiencing things you have at home, hot baths, diets, stress management, again diet, this time the elimination diet.

Fortunately, you have plenty of possibilities to improve your situation. There are Facebook platforms, nevertheless, every person recommends different methods. There are webshops, where you can easily spend your yearly earnings and pile stuff at home because you never know which one might help. Then there is the possibility to tell your friends, speaking to people, you know, sport-mates, workmates and so on, but nobody has ever heard about this, so they are clueless. This leads to remembering that only you are the person with the complaints, huh! Now, they never look at you the same again, now they know you are different, you are having problems, you are damaged and strange, with such a strange thing, nothing that you can prove. If you are brave enough to share half of your negative findings or feelings, they simply end up categorizing you as crazy, or weird. Because at the end of the day who has ever heard such a thing, that somebody has so much pain, so much to endure, so many symptoms and with no help from the doctors?

Everything is just cool, I will get help, people help me, not regular people, but friends, mates, family, people with similar problems, doctors, and doctors in this very special field. Somebody must be helping me. I do not want to live like this anymore, it is no life, torture. I blamed myself already in every possible way, people could see the pain in my eyes, on my face. I was nervous, I was bad-tempered, I was a mess. My partnership broke due to this, no wonder!

Hope helps, hope for a change. I might get up one day and realize it was a long vivid nightmare and it is over. But it never is, every morning I get up and realize, it is reality, my reality, my life, my busy nights, my pain running down my spine and down my legs, my belly acting crazy, my nerves, my blood. But is hope enough or do we need more? What do we need? Action! Inventors, doctors, who are well informed, special doctors, who care, who give their best, patients who tell their stories, who do not remain silent, we need evolutional ideas, new methods, new ways, patient advocates, a social net that protects us, IC associations and businessmen. Sponsors and pharmacists, nurses, who know, leaflets, movies, books, magazines, TV shows and broadcasts, slides and PPTs, researches and developments, we need a system that holds us, we need people to fight for us, we need new, better medicine, treatments, specialized ones. And most importantly, to be listened to, and to be understood and taken seriously. That is what we need.

Yours truly,
Valeria (UroSystem IC Ambassador)