Interstitial Cystitis

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I developed excruciating burning in my bladder within the last two weeks. After ruling out a bladder infection, and after doing much Internet research, my symptoms (burning 24/7) seem to match interstitial cystitis. Has anyone received this diagnosis? It appears that the condition is chronic and very very difficult to treat, and that there are no proven treatment. There are treatments but they are pretty extreme (you can Google them under treating Interstitial Cystitis.) 

So what a low blow. Can anyone out there help me? I see a urologist for the first time tomorrow. Can anyone tell me what I am in for to cure this horrible burning?

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  • Posted

    Were you checked for a bladder infection?
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    • Posted

      Hi Lee,

      Yes, first thing I did was to check for bladder infection. No infection. Tomorrow, I will consult for the first time with Urologist. But my goodness, there appears to be no sure-fire treatment, and it may last for years. I sit in scalding hot bath every hour which gives me about 45 minutes of relief. I am houseband and tied to the toilet and bathtub. What a life.

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    • Posted

      Oh i am so sorry you feel so miserable, I just wanted to make sure the bladder infection was ruled out. Hopefully it wil be something easily treated. I look up everything on the net when I have a symptom,at times its really helped,other times I worried about something I ended up not having . Fingers crossed you will find an easy treatment at the doctors,Keep us posted please.
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    • Posted

      Thank you Lee. I Googled a very very complex medical article on Interstitial Cystitis which one almost has to be a doctor to understand. It is about 30 pages long. I will start tackling it while waiting for the doc this morning. The other articles I found concern treatment methods which are out of my budget, i.e., the Wise Anderson Protocol. I am going to ask my urologist about having my bladder removed. I am not vain and could live with a bag. Will get back to you. All I know is that I cannot spend my day sitting in a hot bath which is the only relief I get, and only for about 30 minutes. I am getting Fentanyl patches today which won't interfere with my chronic gastritis. We'll see how doped up they make me. If I am too dopey, and my urologist can't treat me, let's just say I have lived a full life and everyone has their timesmile
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  • Posted

    Hi l,m sorry your feeling so bad, maybe youve seen urologist and he,s helped reasure you, that there is help with treatments.  l had severe symptoms for many years. with misdiagnoses by gp, l cant go in to it all, would write a book, hell memories, including surgery. Finally after years of severe intense pain poor health and mental torment, lifestyle affect, a on my partner and kids, all it took was a l0minute scope by urologist for diagnoses. He prescribed cimetidine, he also diagnosed acid reflux, the cimetidine are histamine receptor, as with ic you produce too many mast cells that cause too much histamine causing inflammation, he also prescribed amimtriptylene, there a nerve end calmer to help with pain, also reduce output, and the frequent output of urine aggrevates the inflammation more, and they also help with sleep which is disturbed with frequency and pain.  He gave me info of support group, wee ray of hope, now taken over by c.o.b. which was a help to me, they send out monthly mag with latest research, didnt do any at all in uk, so get info from usa, germany, also different treatments, diets, alternatives, masses of stuff, trial and error what works and adapt to yourself. They also have letters from people with ic, l became pen pal to two, one an old lady who didnt have it too bad, the other in her 50s, she couldnt cope with affects and quality of life, and did go for urostomy, she,d to pay for private consultation and push for op on nhs, very resistant to doing it, the woman who founded group had also had one, but it is quite rarely done, as treatments can help quite a bit, or quite a lot, everyones different on what helps and quality of life they have. It usually takes cystascope for diagnoses, so maybe youll now be on list for one. lronically despite urologist telling me l,d acid reflux, l only had symptoms for 6months re heartburn, gall b pain, once gall b removed no symptoms for 20yrs that is, Just over a year ago l started with bouts of severe nausea, then a year ago, constant daily nausea for months, horrendous, couldnt eat, just moving about made it worse,lost 2 stone, that was the only posative being oweight, but what a terrible way to lose it,  finally another scope and gastritus diagnosed, put on omprazole, and it did reduce the nausea bloatedness,wind by 90 percent, along with smaller plain diet, still bubbles away, and little flare ups now and again, a worry, and def worse if l dont take the omp. l think with a lot of people they usually have more than one immune problem, allergies, skin probs, just our luck, but the ic can be improved, if not and your feeling that bad ask urologist about urostomy, l can tell your my friend who had it done, now years ago hasnt regretted it, cant say for others,and it is major, but personal choice against lifestyle quality, anyway hope youve had some posative news about treatments
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    • Posted

      Hi Lynne,

      Before I hit the urologist this morning, I wanted to jump off cliff. But then he gave me "Myrbetriq" a miracle drug for Interstitial Cystitis. In a few hours pain gone and so was the desire to pee. I will give him first urine of the morning on Monday, and he will send it out for the FISH test (don't quite know yet what that is but it takes two weeks). Then cystoscopy. I was ready to beg him to remove my bladder before today, but now some hope. 

      As for your gastritis, try completely switching our diet to the alkaline diet. It's all online. You must eliminate lots of things, but otherwise, the gastritis could continue for months or years. No coffee, tea, alcohol, meat, chicken. Just white navy beans, Jasmine rice, oatmeal that is not fortified, almonds, figs, melons of all kinds. Yes, omnepresole is for GERD and gastritis. Also, when I have a gastritis attack, I take slippery elm powder with great results and DGL licorice. Much discipline and forbearance is required to live with a bad stomach. Chronic gastritis is a bear.

      I will ask my urologist about the drug you mentioned for the cystitis. So far i really like the Myrbetriq. But who knows: what is good today, may not feel good tomorrow. Keep me posted!

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    • Posted

      hi the origonal group l was referred to was the c.o.b group, cystitus and overactive bladder., just put c.o.b in search and should come up. Theyre on site with a forum, info advice and mb for sufferers, think they also have phone no for advice.
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    • Posted

      lve never heard of myrbetriq, must be a new treatment, results for you sound impressive, did they say how long you could stay on it if the improvement is good. just read your other comment, your right the pain can make you crazy, lve had a few times freaking out with it, l am also now fairly proactive with docs, due to suffering many years without any referral or diagnosis treatment, many gps didnt have a clue, so a lot of women went on suffering years before scope and diagnoses, now let them know what l need, not surefire end to suffering but pro active at least.
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  • Posted

    Hi Lorraine,

    I was diagnosed with IC as well. My symptoms were not so much the burning but a constant need to urinate, it never abated. I also had trouble emptying my bladder completely as I felt a loss of control and had bad pressure when urinating.

    My urologist put me under and had a look inside but did not find anything. While he was there though, he performed a bladder dilation. Basically he pumped liquid into my bladder and stretched it.

    The results were instantaneous. I immediately felt better and the need to urinate constantly went away. My control is better and I can live pretty much normally now. It's about 80% back to normal. I still feel that I need to go more regularly but it's not obtrusive.

    He mentioned that I may need to return for another bladder dilation in the future, which I can live with.

    After this episode it turned out that I developed a bowel condition too and I am now sure that the two are linked and relate back to an injury sustained to my nervous system when I was younger. I've had every test under the sun and results are all normal...

    I wish you well, please mention this to your urologist, I am certain that it's worth a try.

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    • Posted

      Hi Qerim,

      Thank you for writing. There are not that many IC sufferers that write. My urologist today gave me a miracle drug called "Myrbetriq." In one day, most of the pain and urge to urinate went away. I will take one a day and pray that it keeps working. Monday I will bring him my first urine of the morning and he will send it to the lab for a "FISH" test. Then cystoscopy. Then I will ask for the dilation like you did. Glad you got relief. Isn't it awful? It makes you crazy with pain.

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    • Posted

      Not officially diagnosed with IC yet, but Urologist thinks it probably is. Must do "FISH TEST" and cystoscopy to diagnose. That will take three weeks. Will keep you posted. In the meantime pray that my "Myrbetriq" keeps the pain to a minimum. Keep me posted on any info you have please. Much appreciated.
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    • Posted

      hi  Do you need anascetic for dilattion and installation, lve been offered one, they mentioned cystiat, because my hold capacity is quite good and flow seems okish l said l,d think about it, But the ic has been a bit more aggrevated with occassional touch of blood seen, so might have to do it, having a bad chest l,m wary of anascetic and wondered if they can do as with flexible cystoscopy, which l found quick and easy. thanks
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    • Posted

      No. My doctor did give me a prescription that had to be compounded to use in the vagina. But it really never helped. The Elmiron and Uribel really help. Thank you. I'll check into it.
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