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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21 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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    • Hi Ali, have you tried an elimination diet? I am yet to start my instills but I have heard they are not for everyone! Have you spoke to your specialist because if your mast cells are extremely overactive / you have bad damage they can extend the treatments or do rounds.

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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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    • Hi there, I am so sorry to hear your nan did not look at you in the same way. it certainly does affect sex and relationships even though I didn’t cover it in this post. It is good that you can manage it eating and drinking what you want. I find even on an elimination diet, I am still in alot of pain but if I didn’t follow it I dread to think what my mast cells would be like! Yes, many doctors wonder that with me to! That is an improvement i still have the urge but sometimes I can’t go and sometimes I go to much. Have you ever tried bladder instillations? I think it must be hard for people diagnosed with only IC. I have alot of other underlining medical problems so even when I have had enough of doctors they always want to monitor me now. I think even at 40 you should not give up yet and trust me I have gone through a few weeks of wanting to. Even if the pain is so bad and you can’t follow your aspirations /dreams it takes much longer to get there we all need something to keep up slightly sane and motivated. Maybe writing a diary would help you even if it doesn’t mentally. And thank you for your kind words.

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  4. My sister has battled this for years… it started after the birth of her second child – docs thought it was a UTI. Nope. Took another two years for doctors to figure it out. She has gone through SO much, but now manages to keep it under control mainly through diet (no chocolate, alcohol, caffiene, or certain acidic foods, and then eats a lot of other different foods that help it – and drinks lots of water). I’m going to share this post with her – she may have some insight. My best to you – I’m so sorry you’re suffering 😦

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    • IC is such a painful life altering diagnosis. But at least we know what’s wrong! No one really knows how to fix it, what really caused it, or how to prevent it. I am 100 percent sure it can be helped with diet… there is no cure. I hate when people claim they have cured themselves. I just think, I will see you again crying in pain and wondering “why me!”. I can trace my IC back to when I was 19! I am 40 now and I control this monster with “the best self control” anyone has ever seen. I also dislike that everyone thinks I have the best self control. If someone kicked the hell out of someone every time they had a cup of coffee, I am sure they would have enough “self control” to quit coffee. Even with all my new found self control, I still end up with flares from time to time. Stress, traveling, sex, and diet can all send me into flare land and leave me gasping for air. Lucky me I can keep the painful stunts down to about twice a year. I feel lucky! I really listen to my body and nothing else. The doctors are trained to help people, and medicate us. Most meds will do more harm than good to are fragile IC bladders. I was on Amitriptyline for over a year and it did wonders for my bladder and pain. It numbed my bladder and pain so I could still be a mom, but I have never been the same sense. Every med comes at a cost to our bodies, and sometimes the cost outweighs the pain. So be careful of what super helpful people give you. Try to stay as natural as you can to heal and deal. Diet is everything! it’s a slow process and no one has figured out what’s best for you. One you can figure that out. For me, food is the easy part. Sex and marriage with IC is the hard part. When a flare hits, I have my go to care plan and I know what’s best for me. Good luck on the IC front!

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      • Hi Tori, sorry for the late response. I think you are right it can with diet to an extent I’ve heard success stories unfortunately there isn’t a one fit rule. I have Ehlers Danlos sydrome and a high mast cell count which may be why eliminating foods and drinks does little for me. However I am awaiting bladder installations, having a camera out in my stomach, giving a poo sample, having to have a celiac and chrones test and I am still waiting to see a mast cell specialist so hopefully one of them can provide more light! Same it happened to be when I was 19! I know what you mean you do it because you have to and relapse here and there. I am a very anxious person so I can relate to that and sex can make it worse but I’m always in pain so I can’t say it’s a trigger, travelling is so exhausting isn’t it . I will look into that I’ve been on a new one since my post but it’s so strong it was a short period of time I feel my bladder and my bowl problems are interrelated. Yes I know what you mean . Thanks for your advice xx

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    • Hello Lori , sorry for the late response. Yes they are all triggers but I don’t feel better without these things so it swings in round abouts! I try to drink lots of water too but don’t seem to retain it . It’s odd how that happens after birth and infections I’ve heard . I am going to read her response now and thank you I’ve taken so many different anti biotics to take the swelling down and now I’m taking mast cell blockers because I have to eat gluten for 6 weeks again to have a chrones and celiac test ! I am glad she is controlling it through her diet xxx

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