Discomfort following UTI, no longer infection and urologist thinks I may have IC?

Thank you Shirley! I know I just feel really weird about it all! I am going to try and get another appointment because I saw someone working under the urologist I was meant to see & they didn’t order a cystocospy or anything and I kinda felt like they just labelled me very quickly. I’ll try the d mannose anyway for a while! With regards to low level infection, I thought that was what was causing my problem but they never seem to have found anything since my original infection a few months ago. Feel so sad about this, I’m only 23 definitely going back for more answers. X

Aw bless you / yes you’re too young to be suffering like this,  IC is pretty uncommon and yes I agree you’ve been diagnosed rather hastily - it may still improve on its own but your wise to go back to the consultant urologist- I have never got anywhere with his junior staff either.  It’s a complex matter and needs someone experienced.  As it is uncommon, not all doctors will know about it - my urologist says he’s always writing to doctors telling them to look for other causes of infection symptoms don’t clear up or test negative.  You’re doing the right thing - all the best to you!

Hi Shirley! Thank you. Basically the registrar said that I should try D mannose for 3 months and then they would do a rigid Cystoscopy to check it all. Anyway, I took them for a week and when I stopped things did settle tbh. Anyway by then I’d already had a appointment with a consultant who said that actually the rigid Cystoscopy is the only thing that will rule things out. He did it and everything looked normal but when they stretched bladder & there were some glomerulations. He hasn’t labelled me with IC, j think because this irritation could be due to the infection and over subscription of antibiotics 2 months ago, I have a follow up in 3 months & I hope it settles again by then and this is just a response to too many antibiotics and infection (and caffeine- I started drinking loads of caffeine before I got the infection and think that irritated my bladder- infection & over prescription of antibiotics on top of that.. temporarily irritated bladder!) 

Hi Bella, well that all sounds more positive.  Sounds like he knows what he’s talking about - bladders can be upset by lots of things - not just by IC which is relatively uncommon, so I hope you’re reassured and that things will settle down soon.  This hot weather won’t be helping! Keep well hydrated and eat bladder friendly food and drink until things are back to normal.  Sounds like you’re on the way to recovery yay! Keep me posted! 

Thanks Shirley! I thought I was but bladder has felt a bit irritated again after the cystoscopy (which I’m thinking is because of the cystoscopy!!) haha. I have a follow up in 3 months to see how things are but I do hope they settle down again and just go as the cystoscopy  was less than a week ago. Do you know much about glomerulations on the bladder? Consultant didn’t seem overly worried, said sometimes they can present in IC but he will see me in 3 months! So who knows! Xx

Hi Bella, I’m certain the current irritation is down to the cystoscopy - this happens to me every time I have one.  Lasts a couple of weeks maybe.  It’s like poking an angry bladder with a stick! It will settle down don’t worry.  Glomerulations are like tiny little bleeds in the bladder lining.  Little burst veins - this is often seen in IC but also in any bladder that’s inflamed for any other reason.  Your poor bladder has had a bad time so treat is kindly, like a poorly friend (it’s too easy to get angry with it!) lots of specifically bladder friendly food, lots of water or milk, take it easy, rest and find something nice to do just for yourself.  Reduce stress as much as possible.  You’re poorly and unlike a broken limb it’s not obvious to others which doesn’t help but don’t dismiss it and try to carry on as normal if you have a busy life - I know it’s hard but it’s part of the healing process.  I hope by the time you see them again in 3 months you’ll be feeling much better 🙂

Thanks Shirley! It definitely got much better before the Cystoscopy so felt a bit annoyed that it feels irritated again but yes it probably is that! Makes sense. Ah ok, thank you. That makes more sense. I do work full time but will take lots of rest in the evening and weekends! Thank you for replying- will keep you posted!  

Hi Shirley! Just an update.. 2 weeks later still waddling around with bad pain  so went to my GP and had traces of white blood cells and blood in my urine. Because this has never happened the whole time I’ve been poorly, apart from with initial infection, he’s given me an antibiotic to rule out infection or underlying infection causing all of this. I’m a bit nervous! Because he has given be Cipro. I’ve taken one tablet already & had absolutely no side effects but I know it’s a pretty strong one. I think he’s given me it because I’ve had Trimethoprim & nitrofurtaonin in the last 2-3 months & think it’s importanr that I don’t build any resistance to them because I am someone that can get UTI’s! Hope I’m ok on it! Only a week but still!! Then GP said if you still have symptoms after taking that, it rules out an infection, so, try anti inflammatory as regularly for some time before your appointment, which I thought was quite a good bit of advice, just to help any inflammation. I am nervous !! Haha x

Hi Bella did you take the D Mannose? What anti inflammatory medication have they given You? Went I go to the GP I'm told that there are white blood cells which could be due to inflammatory. Have you tried taking organic turmeric tablets? I take turmeric every other day in yogurt. It does help. Don't take too much because it's a blood thinner.

Hi Bella, I’m sorry you’re still getting painful symptoms.  Take the cipro because it’s always possible that there is an infection going on.  I’ve had stronger antibiotics and been fine.  A weeks course won’t do any harm.   However, if the problem persists it could still be inflammation with no infection.  The blood could also possibly be due to dehydration if you’re not drinking enough.  It’s fine to take an anti-inflammatory provided your stomach will let you - mine won’t so I can’t take them.  Your doc should really prescribe something like omeprazole to protect your stomach while you’re taking them.  See how you feel after the course - let me know how you go. Take care. 

Thanks Shirley, I will do. 

Yes the doctor did say keep an eye on your tummy so I think he will give me something if i struggle with it! Could all these symptoms be possible through just inflammation or do you reckon it is IC?! I guess I won’t know until the symptoms go/ don’t! Haha. Thank you xx

Hi! I only ended up taking d mannose for a week (one a night for about a week) and my symptoms almost completely went after I stopped that week. Bit I think this could have been because my bladder had actually started healing rather than d mannose because I don’t know how such a small dose could have done that. Nevertheless I had to stop because the urologist wanted to do a Cystoscopy. To rule out anything serious. Since Cystoscopy I have been really irritated & now on antibitoics for possible infection caused by it. At the end of these antibitoics, GP just said I can try ibuprofen and see how I go. I have a follow up with urologist in 2 months time! So hopefully my symptoms go by then. If not, urology may want me to try d mannose again! Can’t believe all this- I only had a normal uti before all this started! I have a theory though- I started drinking loads of caffeine a few months before I got an infection, had loads of UTI before and always been fine after but I think my bladder may have been irritated due to all caffeine etc and then infection. Hopefully it’ll just pass over time! 

Hi Bella I get symptoms of a UTI but when I go GP there is no infection but an increase of white blood cells. My GP said this could be because your body is trying to fight inflammation. My urologist said I should only take anti biotics if an infection is present....my GP said the same.

Hi Bella your situations sounds just like mine. I'm 33 now but mine started when I turned 30. It all started with GP giving me loads of different anti biotics for back pain. During that time I was drinking alcohol and caffeine. Then 2 months after I woke up one morning with this pain and it hasn't gone since. Since March 2016 I have been taking 500mg of d mannose three times a day. If I don't take it then it gets worse. I am very strict with my diet and follow the IC diet and eat loads of food that helps inflammation like turmeric and greens. I also don't wear any tight fitted clothing that restricts my bladder and no longer do high intensity workout.

Hi sandy, 

That is really unfortunate for you. How would you describe your symptoms? I wouldn’t say mine is severe pain, more just a discomfort down below. Almost like an ache I guess. Thing is I had a normal uti, which was then treated but this only all happened a couple of months ago. So I feel like I’m quite early on in everything. I don’t take any d mannose and mine doesn’t get worse, it stays the same. It’s completely gone at one point, but now it’s here because I’ve had a Cystoscopy. I hope we both get some resolve over time! X

Also I have been advised to take antibiotics again on this occasion because something has showEd up in my urine, that during the whole time, has not been there. So did your symptoms not start with a uti? 

Also.. if you’ve had that constant pain & always have white blood cells in urine, is there not a chance that you could have an underlying infection? I’m sure your medical professionals have ruled this out but one potential option for me is a long low dose of antibiotics, if my symptoms don’t go, a relative of mine went through something similar & that sorted her out! 

Hi Bella yes this what a private urologist said. I've got an appointment with guy's hospital in two weeks so will see what they say. Where abouts are you based in the UK.

Will they treat you for that then? That could cure this for you!!! I think my main issue is that I’ve been poked and prodded (Cystoscopy) and been stressed etc and too many antibitoics so I think mine will calm down in time. Can’t help but think the urologist was a bit hasty to do that rigid Cystoscopy and hydrodistention as I’ve only been suffering a couple months. But apparently that’s the only way he could get a proper look and rule out everything! He hasn’t labelled me wirh anything just yet. South of England! Did it cost you a lot to go private? I’ve been tempted! But the guy I see has a private clinic too so might as well just see what he says in 3 months. I saw his registrar a week before I saw him but he said try d mannose for two months & if not will do Cystoscopy but I then had an appt with actual consultant who wanted to go ahead and have a look! All a bit messy! 

Hi Shirley, sorry to send you another message but you seem well informed. As a side note- my GP was quite surprised that the urologist did a hydrodistention with the rigid Cystoscopy! I feel like this is a very invasive treatment. I just went with it because he said that’s the only way to have a proper look at the bladder wall! Probably why I’m feeling so sore after. 

Hi Bella, it could be either.  Or something else!  IC is thankfully still fairly uncommon.  It sounds possible but don’t panic if it is confirmed as that, some people only have it mildly and have times of normality between flares. It’ll be a case of learning how your body reacts to certain foods, drink and lifestyle and adapting accordingly.  It’s a slow process but worth doing as well as following the doctor’s advice. Sometimes a bad infection can leave a lot of inflammation that can take a long time to heal - we can’t really rest our bladders can we? Lol! Because they’re always in use healing can take longer than, say, a bad graze on our arm or leg! Keep calm and see what happens.

Hi Bella - just read your second message.  Yes a flexible cystoscope would have been better but a rigid one is also used and yes, it is invasive and will upset an already inflamed bladder but all that should settle down (or back to where it was) in 2-3 weeks.  You can indeed feel sore - I think that also depends on who does it - I had one with no probs after and another (different surgeon) that was awful and I was on morphine for a couple of days after.  We just don’t know what happens when we’re ‘asleep’!  

I’m a bit nervous that he’s going to label me with it because he said that when he did it, if there are glomerulations that’s one way to diagnose it. At the moment though food seems to have no effect because it’s just been a constant feeling, didn’t flare or anything, that just went and now Cystoscopy has brought it back. I said that to my GP and he said it’s basically inflammatory and seemed to think that ibuprofen may help if antibitoics don’t. I haven’t had any scans or anything done, but what else may it be? I don’t think the urologist seems to want to rule out anything else? I am scared because as you say it’s rare, I’m only young and hopefully when I next see him it really would have settled! He didn’t say if the glomerulations were bad or not he just said everything normal apart from I did have a few of them! And I said is that what people with IC have and he said sometimes yeah and then sort of didn’t say much else! Yeah that’s so true hopefully he wasn’t too rough but does feel like he has been! Thank you!! 

Hi Bella it cost me 200 for a consultation in Wimbledon. He told me that I can be referred to him on the NHS but I'm going to wait for my appointment with Guys hospital. I am thinking of being referred to Wimbledon to be honest. The private doctor thinks I have a chronic immflantion of the bladder wall which might be able to be treated by anti biotics. But he can only be sure by doing test. In the last two years I've only had one cyscopty...in 2016. Which is annoying because they don't seem to be taking me seriously.

Hi Bella, it’s all very frustrating isn’t it?  My urologist attends seminars in the US about IC every so often, but not all urologist are as clued up about it.  I’d look at it like this - it settled down before so you know it’s capable of settling down again.  This is what I tell myself and it does help - one time I was rolling around on a trolley in A & E in agony and two weeks later I was walking the dog on the beach! Also your body is constantly trying to heal itself so you just have to find a way to help it along.  A long course of low dose antibiotic like trimethoprim might be a reasonable suggestion whilst it’s recovering.  You could also ask

about Mirabegron (betmiga) as it’s a bladder calming medication that also stops you wanting to keep weeing.  It’s better than Toviaz which I was first put on.  The little bleeds on your bladder lining just confirm inflammation, not the cause but as they’re most often seen in cases of IC, then you probably will get that diagnosis.  BUT remember, as my urologist says, it doesn’t really matter what they call it - the treatment is basically the same.  It doesn’t mean it’s going to get worse.  The future is unknown and one things for sure- worrying about it will only make it worse! I don’t know about you but when some people get anxious they get a headache or feel sick or have diarrhoea- I get bladder pain in a similar way and need to wee more often.  When I was told I had IC I thought ‘oh no! Not that - anything but that (I’d read all the horror stories and, to be fair, some are horrible) but since then I’ve learned to live with it and try not to stress, stick to the IC diet and drink more.  4 years on I’d say I’m no worse but maybe even a bit better.  I’m certainly better now than I was at diagnosis.  As you say all the initial poking around doesn’t help (the hydrodistension was a bit over the top I feel - although they do need to get a proper look) ironically the best way to look is when the bladder’s full but obviously that would be rather difficult! A vet told me that lol! There is a very good book I could recommend (if I’m allowed) written by a consultant urologist at Southampton Hosp.  His name is Tom Whittlestone and it’s called ‘the calm

Bladder’ it only briefly touches on IC but is very helpful in explain all bladder conditions, the tests involved and how to treat infections and self help measures.  It mentions ‘slime’ (lovely!) but is very interesting how bugs can hide and cause infection and yet urine tests come up negative.  Worth having I read I think.  

PS sorry, it’s Dr Tim Whittlestone, not Tom. 

Hi sandy, 

Yes see how you get on. My urologist mentioned the possibility of trying me on a low dose of antibitoic depending on what he saw on Cystoscopy so I will see what happens at my follow up. I’d definitely say keep the appointment to see what they have to say then maybe go back to the urologist you saw as he will likely put you on antibiotics and that could rid you of the symptoms altogether! How amazing would that be!! I wish you the best of luck please do keep me posted! 

Thank you Shirley. Interestingly enough when the doctor first saw me about uti (before it got bad and lasted ages after) they gave me a prescription to take a trimethoprim tablet one off after sex as a prevention method. So when I do go back to see the urologist, obviously it’ll depend on how I’m doing etc but maybe a low dose of antibitoic will be an option as there was a clear infection trigger for this problem, therefore, that could be helpful to yes let my body heal/ possibly tackle anything underlying and also prevent infections as I am prone. Thanks for your advice! I will be really honest with the consultant about my concerns etc when I see him and go from there. I’m not sure what he will say! I remember him saying that if there weren’t any signs of possible IC he would put me on a low dose of antibitoic so I’m not sure if that will still happen! We will see! Would he have done that straight away after my Cystoscopy or would that still be something that happened in three months I wonder ?! X