The Agonising Truth Exposed: Chronic Bladder Syndrome

Interstitial-Cystitis-

Hey Guys,

I hope you all had a lovely Christmas and Happy New Year!

After being offline along time, here is the one post,  I was nervous to write about – fearing people would have the misconception, I am dirty.

I feel it’s time to share a condition that restricts my quality of life.  Interstitial cystitis (IC) also known as chronic bladder syndrome is NOT  a STI or a UTI.  However, bacteria has been linked to a cause of bladder inflammation.   Being the queenof UTIS and internal inflammation remained a mystery, until recently. Though, it  use to be predicted to be down to my bladder being about the size of a £2 coin.  If you have  never had long-term bladder pain, I sit here in envy. 

Now, I welcome you to my story – the girl who lives on antibiotics. 

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“Antibiotics, the best friend or fiend of an IC warrior?”

Some argue, antibiotics do not necessarily solve IC, which explains why I feel in high levels of pain every day. However, some GPS claim they are essential, to cure it or…. in my case even prevent UTI’S, that worsen it.   For many years I took Trimethoprim, Ampicillin and Nitrofurantoin with little or no relief, even when infections did not exist. Being told in so many words , to abuse antibiotics, it is no surprise I have a weaker bank balance and now  have now become immune to these types.  Typically, I can be on a course for 6-12 weeks at one time.  Recently, I have moved on to three new types of antibiotics on a 6 week course. The pain got so bad I missed my University exams, but now I am figuring out what I can do about this, battling on.

“I don’t give up that easily – with love your swollen bladder”.

I normally finish the first two-three weeks of antibiotics and don’t feel any better.  The first week, I will still be spending my life in bed, wondering if the pills will ever work or will I be dead by tomorrow.  I know this sounds dramatic. Although, the hospital keep ranting on how I could be well on my way, to developing kidney failure. IC and UTIS are persistent, especially if you have had them a long time – in my case 6 years of misery.  It can have as much persistence as a guy you have cut out your life and then drops you that text ‘Hey,bby girl how are you?’ and your like enough already, please.

“Chronic bladder syndrome plays trick on you like the house of horrors”.

Regularly, when I am watching TV, a shooting strike of abdominal pain arrives. Once, this passes I get settled and comfortable and then I realise, I need the toilet. I take a wee, and that’s it I am gasping for air, like there is no tomorrow.Urinating has more sting than a bee. It is like pouring acid into an open wound. I get up struggling to waddle down stairs, to glug down water and send my mum off to buy pain relief…

For an hour or two, if I am lucky I may be numb… ONLY if that feeling could last forever.  I think a day, where I can relax.. Then the pain strikes again, and as I swell the pelvic pain becomes unbearable.  I try to take my mind off it and take a warm bath to sooth body. It does, until I get out.  I pull a funny expression, as if an object is stabbing my urethra, thinking – “why, why me?”

When the pain rife, I cannot sleep or function for many days”.

Awake most nights in throbbing pain, I hobble to the toilet with relief to empty my bladder whilst anticipating the agony to come.  I climb back into bed to realise I hardly emptied my bladder and I need the toilet again.   “I look down at my body with anger and think seriously? – Like it is going to respond to me and say sorry Morgan, you are just an easy target. Reluctantly, I get up once again squeezing my bladder like I would a fresh orange for fruit juice, which can occur up to 10 times in one night.

Finally, I fall asleep anxious the next day it will be worse. I wake up, debating if I have enough energy to go out. Normally the answer is no, my insides are on fire and more often than not I do not want to leave the house.  I am to  scared to go out – scared that if a toilet is not nearby I will wet myself or have to immerse myself in a bush.  I lay back down flat thinking OK, things will get better but –  deep down I know I am more complex case. I have multiple food allergies, which if I am not careful – encourage the mast cells to release histamine and mistakenly attack my bladder.   Eating and drinking like many others, put pressures on my bladder. Furthermore,  I never know if a UTI has returned or if it the IC symptoms. My dip tests always must be cultured before this can be determined.

“Cystoscopy Round Two”

I recently had a second Cystoscopy, whilst I underwent other procedures because I had been showing high levels of blood in my urine for many months. The first one, I had two years ago despite the pain, apparently was relatively normal. So, I had a bit of a shock when the Doctor spurted out  I have a defect in my bladder lining, irreversible damage, internal bleeding and scaring and that  I never have a normal bladder again. On another 6 week course, I also await bladder installations.  The biggest bombshell of them all, was, I must restrict my diet even further.   Ensuring, I am also on a diet that is low in histamine, acid, oxalate and potassium.  In that moment,   I felt like I was going to turn into a restricted herbivore – with my mother on guard, the 24.7 FOOD POLICE, as I call it.

“IC makes you feel like, you will never be happy again”.

As the symptoms are so similar to an infection and there pretty much 24.7, I always think how long to the next round of pain…. Worrying it will be back sooner than it should. I missed out going out on New year but I want to focus on a couple of helpful blog posts in the next few weeks to endeavour to inject positive vibes back in me.

Do you suffer from IC like symptoms?

If you had bladder symptoms lasting longer than 6 weeks, you may be suffering from IC and should see your GP.  I know its hard but you really need to try and stay hydrated to prevent migraines. Imperial Colleges’ guide is useful to help you manage IC like symptoms.

Have your Say?

Do you suffer with IC like symptoms and have good tips to manage it – if so, why not share them below?

Thanks for reading,

Lots of love,

my name

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6 comments

  1. Oh I feel your pain! Praying they find a cure I’ve been diagnosed 6months but suffering 2 years currently on a course of weekly bladder instills after the hidrodistention didn’t work 😦

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  2. Oh my gosh 😔 so so relatable… thank you for writing this. Totally described what my worst flares are like, sorry you have to go through it too! X

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  3. Living your story. Started when I was 12, I was staying with my nan who never looked at me the same afterwards. I didn’t understand at the time but by the time I was 16 I worked out what she must have thought. Then the years of endless lectures from doctors and nurses. Endless excruciating days and nights of pain. Choosing to live literally like a nun for 18 months in the hope of some relief. Nope. Sorry. The Procedures. Scans. Tests. Antibiotics. Exhaustion. Drinking water, water, water, water. October 2015 fed up, I decided to stop seeking medical support and I live with it. I eat and drink what I want and suffer anyway. I saw the doc for an unrelated illness, he had a water sample and asked how I was even standing? I no longer feel the pain down there. I no longer feel the urge to pee, I either just go because I’m passing the loo or I get a bit of a headache. Doc’s referred me again but nothing’s come of it and I’m not chasing it. I don’t suppose any of this is doing me any good in the long run but what can I do? Who listens? No-one. The fight is gone out of me. I’m 40. I hope you have more success. Sorry I haven’t helped with any pearls of wisdom or given even a glimpse of light other than perhaps knowing you are not alone and I believe you, and in you. Wishing you all the best X

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