New to IC!

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.

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.

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???

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.