Inconclusive cystoscopy & dilation; so what next? 6 month’s of IC-like hell and now what?! :(

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I just got discharged from hospital after having a cystoscopy and bladder dilation under general anaesthetic this morning. Over the last 6 months I’ve been seriously ill with what my doctors and urologists we’re almost certain was IC as all urine lab tests came back negative. Had my kidneys scanned too, absolutely fine they said. I’ve been so poorly the last 3 weeks that at times, even tramadol hasn’t worked and I’ve been really miserable!!! I pinned a lot of hope on this procedure today, hoping for answers and a bit of closure. However the consultant said that my bladder didn’t show any signs of bleeding/ulcers. He said there was a small amount of debris in my bladder but that could be because I was a bit dehydrated as obviously you’re only allowed limited fluids before the op. He said he’s 90% sure it’s not IC and to be honest I’m absolutely gutted as we’re still no further forward. I reiterated how unwell I’ve been and that in the last 7 days I’ve started leaking slightly about 5/10 mins after urinating. The consultant said if the bladder stretching doesn’t bring me any relief the next step will be urodynamics (to see how the muscles are working) and then biopsies if needed. 

 Has anyone else had a similar experience to this? There’s definitely something wrong, I can’t be as poorly as I’ve been this year for no reason!! So confusing. 

 Sorry for the moan guys, just hoping someone has experienced similar and could share any info? Xxx

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  • Posted

    Hi, I’m so sorry you’re feeling so poorly and I completely understand your frustration - it follows a familiar sounding pattern I’m afraid.  You do not have to have the hunners ulcers to have IC - some do and some don’t - so that doesn’t rule it out - they should be going more on your symptoms as well as the clinical findings.   If you don’t mind telling me a bit more - what exactly are your symptoms?  What, if anything, have you been given (apart from tramadol)? And have you tried any self help measures? I have a lot of experience (sad to say) of bladder pain syndrome/IC and hope I can give you some helpful advice.  Also how old are you? and do you have any other conditions (like IBS, fibromyalgia)?  I’m happy to help as I know how awful bladder problems are.  Hope you recover quickly after today’s op.  
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    • Posted

      Hey Shirley thanks for your reply. I’m 22, and yes, I also experience IBS symptoms (really bad sometimes, I eat something and minutes later I’m rushing to the loo cramped up and in agony!). 

       I’ve been using marshmallow root, Epsom salt baths, heat pack and peppermint & chamomile tea. Mine isn’t diet triggered but I’ve been sticking to it just incase over the last 2 weeks as I’ve been super unwell, but to be honest my diet is clean and healthy full time as I’m really into fitness so I don’t eat rubbish really! 

       Hopefully the bladder stretching will bring me some relief but i know it won’t be lasting relief... sad 

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    • Posted

      Hi, I can see you’ve already had some good advice on here.  One thing about IC sufferers is that we really do understand what each other is going through!  You might find the IC Network app helpful - it is a handy tool for finding out which foods and drinks are bladder friendly and which are not. It’s great that you have a healthy diet but there are many healthy foods that are a definite no-no to IC sufferers, eg citrus fruits, sparkling water, caffeine such as in coffee, and tea (except redbush which is caffeine free), rhubarb, cranberries, many spices, tomatoes and others.  The majority of sufferers find that diet is a big factor.   You could try taking an antihistamine like cetirizine or hydroxyzine (so long as you can safely take these) as inflamed tissue releases histamine and the bladder is no exception.  Make sure you drink plenty of plain water (or milk) and try to avoid antibiotics unless you definitely have an infection.  There is a tablet called Mirabegron (betmiga) which is calming to the bladder and helps with frequency especially at night.  IBS (which I also have) doesn’t help especially if you have periods of constipation.  This is because the nerves that supply the pelvis, bowel and bladder are all bundled together at the base of the spine so upset one and you upset all three!  You could also try a tens machine and place the nodes on both sides of your spine below waist level.  Many have found this very helpful but it takes a while of daily use to start to feel the benefit.  A nurse I know uses one and said it’s fine to use it for longer than the recommended time - the only problem might be slight skin soreness where you stick the nodes on but I’ve never heard of this happening.  Hope this is helpful and I wish you well asap. 
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  • Posted

    Hi, why not give Pukka Wholistic Aloe Vera a try together with some Serrapeptase capsules. Not the ordinary Aloe Vera but Pukka do special ones that use the inner leaf and are freeze dried. I use these two and had no further probs. Serrapeptase is for inflammation and well worth reading up about. Good Luck

    JX

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    • Posted

      Hey, I’ve heard this mentioned a few times, I should probably give it a whirl. Will look up the serrapeptese also. Thank you x
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    • Posted

      Hi sunny, sorry to hear this. Don't panic because it can make things worse. I also had test done to be told nothing is wrong but still have the pain. Exercise can make things worse especially high intensity. Try not to workout for a couple of weeks and see of that makes a difference. I've been taking d mannose for 2 years and it seems to help on off. Are you following the IC diet?

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  • Posted

    Hi Sunnyday95,

    I am so sorry that your feeling so poorly and disappointed after having the dilation and cystoscopy which I have also had myself, in fact I had it done twice and my bladder like yours had nothing wrong with it.

    I have recently had the urodynamics myself and it showed that my bladder is going into spasm and that's what's causing all my pain and leakage. I have had to learn to catheterise myself since and now on the waiting list for botox treatment, where they inject botox into the walls inside the bladder which will hopefully stop the spasms and give me more control over my weeing. I have been told that I will probably need to catheterise in the beginning following the treatment but not for long hopefully. If the botox doesn't work I can either stay as I am or have a catheter fitted.

    I have been told that the botox is very successful so hopefully it will be and then it lasts anything from 6 months up to a year which sound better in my case and possibly what your next move is going to be. Don't worry about the urodynamics as it's not painful at all they just insert a thin tube into your bowel and another into your bladder to see exactly what is going on in your bladder when it's full and when you wee. We are so lucky really that they can do this but please try not to worry yourself to much as I have come to terms with the idea of botox now and will be glad when they do it.

    Good luck

    Gill

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  • Posted

    Yes I had exactly the same result on cystoscopy except the doctor took bladder biopsies which showed significant mast cell activation so I was given an IC diagnosis.   I follow the IC diet, take Prelief with every meal and use AZO when I get a flare.  

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  • Posted

    I wanna cry reading this!! I have felt awful for 9 weeks now. It started with a Uti the last week of June..2 different antibiotics, 2 rounds of them... still pain but no bacteria.. I was diagnosed as having IC..  I have random pain and pulling in my. Waist and specially my belly button area.. I have no energy, feel nauseous most of the time.. pressure... I am so tired of this!!!  Why is this just now happening???  
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