New to IC!

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So just today I had a cystocopy due to pain and my bladder not emptying fully. The preforming doctor found ulcers that he got rid of and then expanded my bladder so I could hold 600 mL instead of 200 mL of urine. In doing so, he confirmed that I have IC. I have to wait until I have a follow up with him, but where do I go from here? What foods can and can't I eat? Excercise? Vitamins? I'm a little lost as to what I should be doing! Thank you!

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  • Posted

    Hi Sarah, I am so sorry that you are going through this. I too am somewhat new to this new illness from hell, having begun the symptoms in earnest back in September (when I thought it was a bladder infection). I've heard bad things from other women about the various "therapies" for this illness and so have not undergone any at this time. I may be forced to at some point, who knows. What I have been doing, chiefly, is be very aware of what I'm eating. They say the bladder becomes ulcerated, irritated and even gets lesions because there is too much acid in the body. I am a vegetarian so much of the food I eat is (non-GMO)soy based. Soy is on the list of foods to avoid. Go online and research the foods and beverages to stay away from. Caffeine is also on the list. I have not yet been able to give up my one lousy cup of coffee in the morning but for that little treat hours later I could be doubled up in pain. I'm surprised the doctor didn't give you info on diet. The key is to keep the body as alkaline as possible. Also, drink lots of water. My primary doc gave me a script for an antidepresssnt called amitriptyline which I have not taken due to weird sounding side effects like weight gain, heart arythmia and hair loss. So I am in pain much of the time. When I have a decent day I am profoundly grateful. One of the therapies my gyn has suggested is called a bladder installation. This is where they put a catheter like thing inside of you that goes into the bladder and deposits a coating which is designed to rid you of a flare. Some women have written that it helps while others say it only helps for a short period of time. What puts me off is the doc telling me I'd have to have this procedure done eight weeks in a row for it to be effective. I believe there is some sort of anesthesia involved. Last week was a very rough week for me. Today is not too bad. I hate having to live like this. I hope you are feeling ok and I hope yournoain isn't too awful. Another thing theynsay to do is to get these freeze dried aloe Vera capsules. Aloe Vera is supposed to be good for alkelizing the body. So be aware you can always try that. But for me, I feel,diet is foremost. Rule of thumb is to keep away from anything, food or beverage, that is acidic. Best wishes to you.

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    • Posted

      Thank you for the reply! Yeah, I had so many questions to ask thr doctor but he was backed up in the operating room and couldn't go over it. Have you tried the aloe pills yourself?

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    • Posted

      Yes, I just took three. My understanding is you are not supposed to name brand names on this site...don't know if that's true. They are freeze dried capsules and I guess it's better than drinking the stuff.  

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  • Posted

    Hi lve had ic many years, though took many to diagnose, by cystascope with urologist, he said l didnt have ulcers, and ic was origonally called hunners ulcer, took them a long time to id it, and still most of public and some gps never heard of it. The urologist put me on cimetidine for acid reflux, also amitriptylene which as initially used just as anti depressant, but they found it calms nerve endings in the body, and the nerves in the bladder wall are inflamed with ic. if very bad it can cause pinpoint hemmorages, which can cause scar tissue and shrinkage which leads to those affected having smaller bladder and less output of urine. So its trying to stop inflammation, amitryptyine can aslo reduce frequency, and going often can irritate, but amitrip used for ic is only needed in low dose about 10mg usual, for depression much higher dose, l guess it does have side affects but many with ic do use it, most also have acid free diet as much as possible, there,s other prescribed meds, and herbal ones, and some do have bladder installations seems different things do for some and not others, were all a bit different, for some its more frquency for others pain heat stinging, those with it try many different meds, op procedures, alternatives and supplaments, to find what suits you and helps most.  my regime helped 90percent in time, still get some stinging frequency and soreness, but not as bad as it was in the time waiting for any diagnoses, some of us its taken years to get diagnoses and treatment, sometimes had non diagnoses or wrong diagnoses and treatments, My urologst also gave me info on organisation who specialise in advice, fairly new one set up to raise awarness and advice, very good org, they were taken over by the c.o.b cystitus and overactive bladder foundation, theyre on here and also very good, can advice on all old and new meds, alternatives, complimentry,s, theyve a forum for others with it to advice and names of urologists who specialise. l think a phone advice line also, theyre worth looking at, There are a couple of very good med supplaments, who many use with success, theyll give you names of them. Mine has been reasonably settled years, but recently bit of a problem, l had a second cystascope, flexible meaning without anascetic, due to bad chest, it was easy and quick, camera showed my urethra narrow, meaning less output so need same as what youve had, stretching of urethra, on hold at moment, later.

    ;i,m sure c.o.b will give you more detailed info to help you.  Oddly they still dont know what causes it, they didnt do research at all in uk, not sure if they do now, used to rely on usa, germany, for new info and advice, some specisalists think its allergic reactiion to something in water or air, others think an auto immune condiiton, but have advanced in treatment, but dont feel bad having a rant about it, very nasty condition through bladder sensativety and the level of pain, l might add most dont get ulcers with it, so your doing well and hope you feel better now theyve been treated.  Best wishes.

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  • Posted

    I'm relieved to find this discussion - many thanks to all contributors. I've had UTIs for about 35 years, usually our friend E-coli, but last Christmas I had an unusually painful attack. I've lost count of how many antibiotics didn't work, and forgotten which one did work, only for me to get another UTI shortly afterwards. Eventually I took myself off to a top urogynaecologist, and shortly afterwards, during a bad attack, my bladder stopped working and I had an emergency admission to hospital for a catheterisaton of screamingly painful difficulty and came out with an indwelling catheter. Shortly afterwards I was readmitted for cystoscopy and urethral dilatation. The verdict was that rather than having UTIs one after another, my bladder was not emptying properly and so the residual urine allowed bacteria to keep multiplying in the bladder, causing my pain and other symptoms. I was put on Cetaflexin for 5 weeks to rest the bladder, and told that I would be taught to self-catheterise so that I could be sure that the bladder was properly emptied. Oh help! I thought, there's no way I'd ever manage that. Meanwhile however, I went away to a peaceful place to hopefully let the Cetaflexin work. Unfortunately there were several episodes of an apparent recurrence of UTI, which lasted just a day or two. I finished the antibiotic about two weeks ago, had a brief period of peace, and then was hit with another episode, far worse than any UTI I've ever had, when the urge and frequency were constant. 'Going' was terribly painful, I passed a mere dribble then immediately had the painful urge to go again. The pain in the bladder and in all parts - urethra, vulva and vagina, it seems, were excruciating. At night I was totally unable t sleep, having end-on trips to the toilet. Another day and night passed in the same way and then on the third night I took a 5mg diazepam, and slept all night without interruption. The following day I was symptom-free, and at night slept for nine hours! Then, in the afternoon, bang! back to constant urge, frequency and excruciating pain. That was yesterday. I had another sleepless night and spent the minutes between trips to the toilet on-line. I got into USA sites where I found that my symptoms, including the periods of remission, would be explained by a diagnosis of interstitial cystitis. I have no GP - every time I go to the practice there is a different locum who doesn't know or apparently care about me or my history. The two recent 'permanent' incumbents have left after a couple of months each, and my private consultant has never mentioned IC, and, for all I know, doesn't entertain it as a possibility. In my experience medical professionals here tend to sneer or be irritated by patients who self-diagnose on-line, so what am I to do? Just grin and bear it???

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    • Posted

      Hi Christina, I am on the East Coast in the U.S. and it is very early here; I get up at all hours because of the need to run to the bathroom or pain in my pelvis and lower extremities, even in the back. I have had symptoms of IC off and on for years but this latest, which began in earnest in early September, has been tenacious and has been kicking my butt. It is my new normal (sorry for using overstated newfangled phrases). I have started to make the rounds with doctors. Now you've got to understand my history...I despise going to doctors. I don't trust most of them or the drugs they prescribe. Saying that, my discomfort and pain became unmanageable so I had no choice. Your docs don't appear to be of too much help, do they? Even in America (I may be wrong but am assuming you are in England) many docs have no clue as to IC. They are quick to pawn you off to a urologist which i suppose is the right thing to do. It's laughable how quickly they send you off, after you've given them your copayment, of course. My primary (GP) prescribed an antidepressant called amitriptaline (spelling) which I have yet to take because of its dicey side effects. Anyway that's besides the point. You need a doc who has some semblance of knowledge of what you should do next. If they aren't capable of that they have little business looking after anyone. Have you been seen by a urologist lately? I know you wrote that you had cystoscope and urethral dilation. I assume this was done by a specialist. Forgive my stupidity but is a urethral dilation the same as a bladder dilation? I have read from various women that because they cannot empty the bladder they undergo these bladder dilations to allow more urine to fill and pass. I have also read where these procedures can ultimately make you incontinent so please be careful with that. The thing most important with IC, I have learned, is to keep to a strict alkeline diet. When I went to my gyn after weeks of terrible pain, she kept insisting we explore the possibility of my having IC. She gave me handouts of foods to avoid, saying they are acidic in nature and can cause a bad flareup. Because I am veggie, much of what I had been eating is soy in nature (non GMO soy) and soy is strictly to be avoided, as are so many foods and beverages, even wine

      and caffeine. I haven't been able to give up my one lousy cup of coffee in the morning so there are times it can bring on a nasty flare later in the day. Thus far, my worst week was last week. The pain became excruciating in my pelvis, lower back even on the sides of my hips. So yesterday I decided to work through it. They say Pilates is good for IC patients as is pelvic floor physical therapy (which I haven't had). I forced myself to work out through discomfort and then showered and relaxed. The pain actually lessened! While I'm sure that won't happen every time it is something I will keep trying to do. Also, I am taking these freeze dried aloe Vera capsules. Aloe Vera is supposed to be very alkeline and coats and soothes the bladder. So I highly recommend them. They must be freeze dried. I would give you the name but I've read that this site doesn't allow you to list brand names. The initials are DH if that helps. It is an American site. First name is Desert. I hope you can get your hands on some because they do help and its better than drinking it. Also, I have been told to keep,drinking water, however, not sure how you will fare with that as you're got the issue with not emptying your bladder completely. Can you go ok now or is that still a problem? When you see these docs don't take no for an answer. Do not allow anyone to talk down to you or act as though they don't care about you. Tell them, if you can't help me find someone who can. And be emphatic. In America they are coming up with new treatments all the time but they still really seem to have no clue. And what works for some does not work for all. Some say it's allergy related and some call this autoimmune. So you do need to remain alert and vigilant to your needs. And, is it normal for you to not have a GP? Isn't that part of your national health benefit? Anyway, I'm sorry to write such a lengthy message. I know long messages can put people off but writing and trying to understand this nightmare is the only  way I can make sense of things. That and researching. Have you been to the IC sites yet? The ones I mention are American based: the IC Association; the IC network; a utube video with a Jill Osborne, I believe, who heads up the network. There is so much info out there and I like to,think with knowledge comes power. You can print some of this stuff out and bring it with you when you visit the docs. Show them the clinical studies. Make sure they know this is an important and most debilitating illness. And I do hope you can get a steady GP who knows what they're doing. Again, sorry for the long message. When I first began researching these forums I read as many posts as I could just to see how people were dealing with this. Most have been very helpful. I hope you're having a good day today. Take care.

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    • Posted

      I too had a urologist who didn't want to believe my input about it being IC. He 100% thought it was a problem with ny urethra.... Until he did the cystocopy and found that I had ulcers and blood on the lining of my bladder. One of the things that you can get from IC is the fact that your bladder doesn't empty all the way, but that can also be caused by a dialated urethra. I would go to another urologist for a second opinion and put it on the table that you think you have IC

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  • Posted

    Thank you Marylh and Sarah.

    I do have a top consultant, and had an appointment recently. My pain has varied from bad to unbearable since I was last here, but he simply said, very reasonably, that he doesn't understand why I put up with it when the remedy is to learn to self-catheterise. The diagnosis from the cystoscopy is that my bladder doesn't empty fully, hence bacteria multiply in the bladder, hence the acute UTI-like symptoms. I said my symptoms seemed to resemble those of IC, from reading other sufferers' accounts, and he sad that is always possible, but the failing to empty the bladder is more likely, and why look for a chronic condition when the condition he has diagnosed can be helped. I admit I'm fighting his conclusion, because I'm terrified and revolted at the thought of self-catheterisation and am sure I could never do it, even if I could pluck up courage to ask to see the district nurses.Anyway, in an attempt to prove the diagnosis, I am to have a scan immediately after I've emptied my bladder - in my opinion!! As I'm inhibited about going to the loo anywhere but at home, I'm sure to lose the argument! So now I'd love to hear from someone who has learned to self-catheterise but had to overcome the fear of pain and discomfort, inability to find the meatus, old-fashioned, but very real feelings of modesty that make one averse to trying (let alone having someone there to help look!), also an inability to bend down or to see clearly, even with a mirror. Meanwhile, here comes another night of end-on excruciating trips to the loo, and no sleep.

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    • Posted

      Hi Christina, I haven't had any experience with catheters but while researching IC and readings from various women, those who have done it made it sound fairly simple, believe it or not. They do it like it's second nature. In any event, I do not have the issue of not being able to empty my bladder but when I am in bad pain it takes me longer to get it all out. I wish you all the best with everything.

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