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Join date : 2018-07-14

My Story...so far Empty
PostSubject: My Story...so far   My Story...so far EmptySat Jul 14, 2018 8:30 pm

Hey everyone,

I was diagnosed with IC in January 2018 after suffering since June 2017 which what I was told was chronic UTIs and kidney infections. I have always had difficulty with my bladder since I was a young girl but after my parents took me too the GP I was told I had an over active bladder and it was more psychological than physical. I have suffered with UTIs since I was 13, I am now 25. However, I started suffering greatly in June 2017 when I had my first “UTI” that just wouldn’t disappear after 16 course of antibiotics, 13 trips to Out of Hours and 1 trip to A&E my mum (who is a nurse) became concerned that something wasn’t quite right and I was slipping through the gap. Unfortunately, my experience hasn’t been pleasant, my GP was incredibly dismissive on several occasions I was told “it’s your age” “are you ruminating after intercourse” “this is typical for a girl your age”. I was in tears as I couldn’t have sex with my partner without the fear of having another UTI as I was told. I was passing urine upto 30 times during the evening and honestly lost count of the amount of times I had to pee during work. I did not take any sick time off of work as I then started to believe this was “all in my head” after a discussion with a junior doctor at A&E. I was told to “drink cranberry juice” which isn’t medically proven. I was also worried about how many sexual partners I had. I was made to feel embarrassed. The junior doctor finished her conscending speech by telling me I needed to understand the difference between bladder irritation and infection. To which I asked what did my sample come back with...significant blood, keotones, white blood cells and protein. Now I realise that actually it didn’t matter whether I had sex, I realised the antibiotics didn’t work and felt at a loss. I finally got referred for an ultrasound in October 2017 after now 16 courses of antibiotics. My GP reception staff continuously told “did I know an emergency” the fact I couldn’t physically pass urine and when I did it was excruciating. My ultrasound came back as normal no concerns. My GPS response was well, your fine let’s put you on trimethoprim for 3 months and you’ll be magically healed. Eventually 3 months past and if anything my condition deteriorated rapidly, I was in significant pain daily and began to experience anxiety about going to the toilet as I was scared of the pain, the blood and everything that came with it. Finally, I demanded further investigation as I didn’t feel I had been treated accordingly with NICE guidelines. Eventually I received my cystoscopy on 29th January 2018. I was going in for cystoscopy and urethral dilation, that was an argument as I was told it was a 33week waiting list after a complaint I was immediately given a date. When I arrived I was told my the surgeon he wished to undertake bladder distension to determine whether I potentially had a condition called IC as my symptoms sounded similar. I underwent this procedure and was in significant pain afterwards, I truly haven’t felt pain like this at this point unfortunately I was off work for 3days. I then was told I would be invited in for 6 weeks of treatment called bladder instillations. I wasn’t provided with any further information about my new condition and was left a little frightened after reading about it online.

I waited until April 2018 before I got my first treatment appointment. The concern I had was I didn’t have anything information about my proposed treatment, I technically didn’t consent to this. The nurse was wonderful and very kind, unfortunately I have been told I am staying on trimethoprim for 2 years. I still currently take my 100mg dose every evening. I have had 5 treatments so far but now I have a 15 week delay until my final 6th treatment. The first was painful but actually I have seen a very small improvement. I know have a “full stream” rather than a trickle however, I do feel that it isn’t a cure as we don’t have one and it is a temporary measure.

Unfortunately, my treatment has had significant delays and now they are reviewing my case to see whether I’ll need to start a fresh again. Honestly, I don’t know if it is working I feel it’s too early to tell. It wasn’t as painful or life changing in a negative sense. I actually learned more about my condition and was given general advice. I now understand my triggers more clearly. Caffeine is my major trigger and I have now given this up. Occasionally I treat myself but find the pain following this just isn’t worth it. I am slowly trying to give up alcohol as again this is a trigger. If I don’t drink enough water automatically I struggle. I keep a note of my triggers and habits. I attend counselling as I struggled initially with the diagnosis and felt very lost and frigteneded, I didn’t want to be in this pain the rest of my life.

I have good days and bad days. I still experience kidney pain in my left kidney and burning when I passs urine. I feel this will never go away and it is something I am learning to cope with. The blood in my urine is slowly becoming less frequent but when. I am stressed or don’t “fully” empty my bladder or drink caffeine my blood reappears with a vengeance.

I just want to note, this isn’t to do with my age as the doctors kidnly branded me with. I’ve struggled for years and at the point where my condition flared in June 2017 I went through a very difficult time in my life.

I am hopeful a cure will be available at some point int he future and hope antibiotics isn’t my GPS go to.
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