Cannot take this anymore - IC

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Hi

I posted on here a few months a go about some symptoms I had been having and I am so sad to say that things have gotten worse all of a sudden. I have seen one private urologist in october (I went private first as I could not stand to wait any longer) who agreed that he thinks i have interstitial cystitis but says a cystoscopy would be needed to confirm. (I still haven't had one due to severe anxiety of it making my symptoms worse). the last urologist I saw on the NHS in November and January was just awful. he was so rude and dismissed my symptoms completely. he said that ic is very difficult to diagnose and they may never know the reasons for my pain and unless I have a cystoscopy they will not be able to help. I currently take 20mg amitriptyline and quercetin supplements as prescribed by the private urologist. I had been previously been experiencing pelvic pain around my bladder (not actually directly on it) as if someone was pressing hard on a bruise whenever I drank anything. it was like I could feel my bladder filling up. I also had some occasional urethra twitching and peed around 8 or 9 times per day. amitriptyline seemed to help the aching to some extent and I was managing my symptoms. the past few weeks have been hell. mid march I noticed urgency I had never felt before in my bladder. I also felt a constant pressure as if I needed to go still after voiding but I knew I didnt which led to more frequency. this flare up would last for 5 days, disappeared for a week and then came back again twice. I'm in the middle of my third flare up in 4 weeks and struggling to cope.

I have been keeping a food diary and I cant seem to make any links. I was fine over Christmas and during that time I was eating all foods that I shouldn't (chocolate, pizza etc) and drinking fizzy drinks etc. I have been having physiotherapy biofeedback to help with my pelvic pain. I've now finished my sessions and clearly they dont seem to have worked. I have been told I have tight pelvic floor muscles and I will admit I do get stressed. I hate feeling like I constantly need a wee. the most times I've been has been 12 times in a day but I could go more than that as I try to hold on..I'm currently not eating as I'm too terrified to eat as I'm worried food might be causing my flares. last week I limited my sugar intake and ate no chocolate and just the odd bowl of vanilla ice cream for a treat. also cut out decaf tea. I'm only drinking water and chamomile tea right now. I don't drink alcohol avoid tomatoes/spicy food etc. I've started taking solifenacin 5mg again as my gp says it should relax my bladder but no success yet and didnt work previously (it's been two weeks??) I dont know what more I can do. I have contacted the secretary of the private uro to see if he is currently taking appointments as my nhs ones have been cancelled due to Coronavirus. I am a tearful mess right now and scared to have intercourse with my boyfriend as last time I flared the next day (not sure if a coincidence as we have before and it's been fine). I feel more depressed than I've ever felt. I'm in constant tears and can honestly say I dont think I can handle this life thing for much longer. I feel that my bladder is getting gradually more and more damaged. I'm absolutely terrified and I feel theres nothing I can do.

thank you for reading.

Charlotte

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  • Posted

    Charlotte I'm so, so sorry you're flaring again. IC (if that's what you have) can be confusing and painful. When you have the opportunity definitely have a cystoscopy. I know it sounds scary but you can do it, just dig down and find the badass queen you are! I can tell you from personal experience it's not as scary as everyone makes it out to be: I had some numbing cream and was awake the whole time, kind of cool actually. It felt like i was p*****g razorblades for a few hours afterward, but I had some urethral pain at the time anyway. I'm in the US and dont know if we have the same treatment options but I take Elmiron and it's helped, along with physical therapy (part of my issue is caused by tight pelvic muscles and a hip injury). Daily stretching helps a lot, I notice a difference when I skip a day or two and sticking to the diet is a must. Don't try to reincorporate foods/beverages that might cause problems until you've been flare-free for months, at least. You might have to accept that certain things will be off-limits for good: no alcohol, caffeine or spice for me, just started having chocolate once a month for the first time in over two years and I nix soy whenever possible. Have you tried phenazopyridine hydrochloride? It's available OTC here under names like Azo, Uricalm and Uristat and helps me with pain, urgency and frequency during a flare. Luckily I've been able to manage this condition with the help of some great doctors and forums like this so it's rare that i have to take it, but I took it around the clock for the first six months or so. I hope some if this helps and you feel better soon. P.S. Some IC diets actual list foods that might calm a flare (dairy & peppermint are two i can think of now) so check them out. During a flare, 1/2-1 tsp of baking soda in a glass of water helps alkalize your urine and calm the bladder, but only do this 1-2 times daily. F

    Good

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  • Edited

    Hi Charlotte

    I'm so sorry you are having so many bad flare ups. It really does take over your life when you have a bad flare up, the pain really does get you down. I would agree that you should have the Cystoscopy . I'm sure the procedure wont be as bad as you are

    expecting and at least you will get some treatment. I had bladder instillations and they were a great help.

    It looks like you are following a good diet and avoiding all the trigger foods. I believe stress can also make it worse. I think I messaged you a while back and recommended Pukka relax tea? I find this brilliant and always have a cup to go to bed on. It contains marshmallow root which puts a lining on the bladder. It really helps me.

    I hope you find some relief soon

    Take care

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  • Edited

    Hi Charlotte. you poor thing! you have my every sympathy! I too have experienced some uncaring doctors but i think its mainly due to lack of knowledge - A caring well informed urologist is worth their weight in gold! Amanda has given you some good advice. I agree that you should have the cystoscopy - I've had a few over the years and it's really the only reliable way to see what's going on in there. I'm in the UK and had a GA as they felt it best as i was in a lot of pain. Yes, it's a scary thought but something that will hopefully give you some answers. IC doesn't always show up but they will able to tell if you have infection and/or inflammation. Amanda mentioned Azo - in the UK you'd have to get this on Amazon. It's good for pain but turns your wee bright orange! so probably best not to use it before any urine tests or the cystoscopy! Remember to drink plenty of water (2-3 litres a day) - it may be the last thing you want to do but its essential to calm the bladder (like running cool water over a burn) quercetin is a good anti inflammatory too and some have found marshmallow root tea very good too. The diet is hard to stick too - I'm the first to admit that, but do stick with it and if you like milk thats bladder calming too. If you can afford it, go back to your private urologist for further advice. I too have a tight pelvic floor and had physio but stopped as I thought it made it worse - I wish now that I'd given it longer. However the breathing exercises do help to relax the pelvic floor so def carry on with them - breathe in for 3 hold for 4 and breathe out for 5. One very important thing to do is to get regular urine samples off to the lab for a culture (dip stick testing is notoriously unreliable) to make sure you haven't got an infection - if you have, this will make your IC symptoms so much worse! Sadly this happens to me a lot! Its negative on dip stick but always picks up infection in the lab - then they can match it with the right antibiotic. I think this should be your next course of action, even if you did one recently. I don't know how old you are but if you're low in estrogen for any reason this can also make bladder pain worse. I know it's hard but try to stay positive - things will improve even though it doesn't seem like it right now - but the cystoscopy is something you'll have to go through I'm afraid and you will get over it with no lasting ill effects. I wish you well as i know how horrible this is!

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  • Edited

    I am so sorry you are in so much pain. I have been there as well and it does feel hopeless at times. I do encourage you not to give up. It took me a year to get properly diagnosed and some time after that to find what helps me the most during a flare. My flare ups come from stress and anxiety most of the time and also if i have to hold my pee at all even if its just 15 mins I will get a flare after. D-mannose powder is something that helps me a lot. I put it in a glass of water once in the morning and once in the evening when im flaring. A heating pad in areas of pain also seems to help me. Depending on the amount of pain im in a light work out helps me take my mind off of the pain like a walk or light jog. My recommendation is to find a urologist you like and trust and take their advice on any tests or procedures that may better help them help you. I know it is scary but you can get through this. With IC it is all trial and error unfortunately something that helps one might not the other.

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  • Edited

    hi there Charlotte

    reading your post has brought tear to my eyes. im so sorry that your in this much agonising pain. Im on the other side of a 4 year flair up and for a long time i was very bitter and angry at the professionals that were involved in my care. it took 4 years for me to get a diagnosis and i wish i could list the medications they put me on but theres simply too many. for me i just had enough and found the fire i needed to advicate for myself and not take no for an answer. the pain was so bad for 4 years, i coukdnt imagine that this could be my life forever.

    firstly i found an amazing GP after seeing almost every single one in Melbourne ( Australia) who finally listened and advocated for me too. i stopped seeing all private and public urologists and gp put me onto a professor urologists, she was my last hope and changed my life. i had about 12 cycstocopys in 4 years with no relief plus they all said there was nothing wrong!!

    my final cycstocopy was with the professor who looked me dead in the eye and said Ulcerative Interstital Cystitis. she did a bladder hydrodilatation and used a drug called Clorpactin. it made things almost all better i couldnt believe it! with the remaining pain i had we spoke about doing bladder installations and botox but i opted for hardcore physio instead and she said that given my age and if i wanted to have children i should hold off as data has shown the hormonal changes can improve things.

    that was over a year ago and now my hubby and i are trying for a baby. we actually fell pregnant while i was having so much bladder pain at the start and my ulcers were so bad and painful that we had to terminate. so its lovely to be virtually pain free and trying for a baby, something i never imagined my body could be ready for given the pain i was in.

    please find yourself a gp who you can trust, i believe it starts there. and absolutely dont be scared of any procedures, youll be asleep and you and your bladder really need them. chat about all your drug options, especially those that go straight into the bladder. amytrip and lyrica only made things worse for me. when your bladder is ready start the physio and get onto a bladder diary so you can time your pees, this is very important for a good nights sleep. no coffee and no alcohol sadly.

    we are all here for support, please keep us updated and dont lose hope, i promise you once in the right hands things will improve.

    wishing you health sending lots of hugs xxx

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    • Posted

      Hi Kristy

      Are you able to send the name of the Melbourne GP? My GP is awesome, but had limited knowledge of IC. Currently struggling with a bad patch and would really appreciate being pointed in the right direction. Many thanks.

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  • Posted

    Hi Charlotte

    I too, feel for you, you poor thing.

    However, my strong advice would to ask for low dose antibiotics for three months. I am well aware that IC is not bacterial, however it is greatly helping me.If you read a lot of the literature there is lots of new evidence that a small amount of infection is hiding in the bladder wall, which gets undetected. Also, read up about Professor James Malone Lee, who treats all his patients with IC with abx. I havent seen him, but my urologist told me about him. I feel that, when they dont know what is wrong, you get labelled with IC.

    I was very bad last year, flare after flare. I have had to take a sabbatical off work and doing much better now. I do take 100mg elmiron tds and 10-20mg hydroxyzine od. i started ialuril instillations, which helped, but had to stop because of covid-19.

    I find yoga also helps.

    I had a cystoscopy about 5 years ago, but i was just told my urethra was tight, so i had a urethral dilatation, which was a waste of time. It was so quick, he didnt even mention much about the bladder.

    Try and get the abx and when you are symptom free for a while, slowly incorporate more into you diet.

    Take care, keep me posted.

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    • Posted

      Hi Julie. I hope you don't mind me jumping in but I've just read your reply to Charlotte. I too have read Prof James Malone Lee's articles on 'hidden' bladder infections and my own lovely urologist also thinks this might be my problem especially as my cystoscopies always reveal signs of infection and inflammation. I was meant to start iarulil instillations just before Covid arrived so that's on hold. i have 2 different infections identified at present (each resistant to the other one's antibiotic!) and I know I have to get that cleared up before I can have the instillations. Can i ask which low dose antibiotic you're on please? I am allergic to trimethoprim but he did suggest nitrofurantoin as a preventative - my problem is the way the 2 infections alternate and i need to keep testing samples and changing the antibiotics! I'm interested that you found the iarulil helpful tho which is encouraging - was it uncomfortable at all? any side effects? Do you do the IC diet too? i know any caffeine or citrus is a killer for me. My urologist said my bladder was definitely abnormal (yes i know that lol!) but couldn't say for sure if it was IC as biopsies were inconclusive. Any further light you can shed on this would be much appreciated. Thank you! Shirley.

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    • Edited

      Of course i don't mind Shirley. This is the first post i have written on here and I think it will help me too.

      I have had problems for about 6 years, I was doing well on Elmiron so my urologist discharged me. I was able to have the odd glass of wine and a cappuccino daily, but avoiding all other acidic foods. Last year i came off the elmiron to take super strength aloe vera, I persevered with this as per the regime, but was flaring all the time, so stopped taking and switched back to elmiron. However, it then stopped working and i was flaring all the time (no more cappuccinos). Asked GP to px the hydroxyzine also. I then became very strict with my diet.

      I was getting to the end of my tether, but was asked to be urgently re-referred and saw a different urologist earlier this year. He suggested the ialuril and I asked about the antibiotics. I am taking trimethoprim 100mg od, shame you cant take this. I cant take nitrofurantoin as i have had it so much in the past, i now react to it. My samples always come back no infection, despite showing protein, blood, leucocytes on dipstick. Must be very hard for you with different resistencies, has your GP liaised with Consultant microbiologist for advice on this?

      The ialuril is not painful, just make sure your bladder is pretty much empty, the rest can be drained with the catheter. I found it a bit sore after the first one as she used a size 10, the next week I asked for size 8 and felt a lot easier after (I am a practice nurse). They were stopped after this because of covid. They are usually for people who do not respond to cystistat.

      I really hope you get sorted with the correct long term abx and then the ialuril will really help you.

      Julie x

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    • Posted

      Hi Julie

      Thank you so much for your reply. It was very helpful. I haven't tried elmiron or cystistat as my Urologist thinks iarulil will have better results. Like you, my samples used to come back negative despite the blood and leucocytes but with all the pain of a raging UTI, over the last few months though infection has been identified, both klebsiella and enterrococcus. I don't think it helps that I'm diabetic, albeit well controlled. I'm having weekly phone consultations with Urology at the moment and they're threatening to take me in for IV abx which I really don't want to do if i can help it. with the iarulil do you feel you need to wee a lot afterwards? just that I have a 40 min car ride home afterwards. After the last cystoscopy when they also took biopsies I couldn't leave the loo for more than 10 mins for a good few hours - it was awful at the time! I also had my third urethral dilatation at the same time but I'm not sure it was necessary. I've had constant bladder pain of varying degrees from totally debilitating bang your head against a wall to mildly annoying. I just hope the iarulil will help with the constant feeling/pressure that i need a wee when I know I don't! My urologist wasn't sure but said it coats the lining so that bugs won't stick to it. At least that'll be something!

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    • Posted

      Hi Shirley

      Poor you, I can quite understand while you are not keen for iv abx, particularly with everything going on atm.

      I am glad he has recommended the ialuril for you. I believe it is better than cystitat, but that is generally used as the first line of treatment.

      Honestly, you should not get the side effects as with the cystoscopy. The longer you can hold it the better, I can manage two hours. The ialuril is a bit thicker, I understand. The first time it went in really quickly and i had some abdo pain after, the second time (with the size 8 catheter) it had to go in more slowly, but i was absolutely fine after and had no urgency.

      I am sure once they sort the correct abx for you and you have the ialuril after, you will feel much better. Perhaps once infection has gone, you can go onto maintenance long term abx?

      Keep me posted x

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    • Posted

      Hi Julie. Thank you so much for your kind and very helpful reply. I'm now looking forward to the time when I can start the treatment! until then I'm to keep testing, Keep taking various antibiotics plus my other meds and trying to flush the bugs out by drinking 2-3 litres of water a day, not my idea of fun as my poor bladder doesn't know what's hit it! I hate having to wee more as the pain afterwards is no picnic but I'll persevere - I've never been a big water drinker - it goes against the grain when your bladder hurts so much but i know the reasoning behind it so I'm doing as I'm told! Thanks again for your help - have a good weekend!

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  • Posted

    thank you all so much for your kind words. I am only 24 so I'm not sure if this is a hormone issue or not. yes I have heard of the professor. the strange thing is my symptoms have not always felt like an infection as there is no burning and I can pee if that makes sense. I managed to speak to the private uro on the phone yesterday. he advised to start betmiga once a day. I had been offered this before by the other nhs uro I saw but I declined as a) i didnt trust him as he was not listening to me/very dismissive attitude and b) a common side effect was a uti (I didnt want to make my symptoms even worse). the uro reassured me that he has lots of patients take this medicine to help with frequency/urgency and they've had no side effects so I'm hoping this is the case. has anyone tried this medication? he wants to do a cystoscopy next week which I am terrified about. he said he wants to see what's going on inside my bladder and thinks it will be reassuring for me if i can see it looks okay. I did express my worries but he said that it's difficult to go any further if he cannot see what my bladder and its lining look like on the inside. I am so frightened and I have read many articles from ic patients who have said this procedure only made their symptoms 10 times worse and inflamed their bladders to the point of no return. did this happen to any of you? I would really like to know as I dont think I can take much more if I get worse. just to clarify I dont have any burning in my bladder thankfully just a sensation of needing to go/dull ache pressure. I already drink d-mannose once a day and my physio has advised to start probiotics and iron/zinc supplements so I've bought some of those. sorry about the long post again and thank you for your advice. thank you again, Charlotte.

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    • Posted

      Hi again Charlotte, I've had a few cystoscopies and apart from a few days rest to recover, (some don't even need that long) they haven't caused me any extra problems and like you say, it's really the only way to see what's wrong and can be reassuring. I would definitely recommend you go ahead as otherwise they can only guess! I'm the same as you in that I don't have burning or pain when i wee either, mainly I have pelvic pressure (bladder full feeling) and it often feels like my bladder is swollen. when it's really flaring I'd say it feels like period pains in my bladder! (like cramp) My symptoms are easier if I lie down - if that's the same with you then that means there is inflammation at the bladder base. You might benefit from bladder instillations to coat the exposed nerves in that area but only a cystoscopy will tell otherwise, as I say, the urologist's hands are tied! I was on betmiga for a couple of years - it didn't give me infections but it didn't help either as its mainly used to reduce the number of trips to the loo and for incontinence, and I didn't really have either. The problem with bladder issues is that there is a lot of trial and error I'm afraid! Please have the cystoscopy then you can move forward with a more appropriate plan. I wish you well and hope you get some answers!

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  • Posted

    Professor Malone Lee has been studying, researching and treating IC for 40 years. Hes based in London but takes international patients. Get your GP on board and get educated about his work. Read his thesis and book which is directed at GP's 'cystitus unmasked' and pass it on to your GP. It may just change your world. i have suffered IC or over 5 years and tried many mainstream and many alternative therapies. Professor Lee is the man - I am finally having great results and great relief!. He's doing wonderful work and changing the way practices, doctors and urologists look at chronic urinary and pelvic pain symptoms. He has cured many hundreds of women. Most likely your symptoms are a result of a chronic embedded infection and a long course of full strength, narrow spectrum antibiotics and daily hiprex ( a bladder disinfectant basically) will help enormously. if not, cure you.

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