Finally had diagnosis of severe IC..

[RachaelT]

Hi everyone, I am new here but have checked out the posts for a few years. After struggling with bladder / urethral pain, urgency, frequency and pelvic pressure which all started 14 years ago after a massive kidney infection landed me in hospital for a week I finally had a cystoscopy with hydrodistention last week and lo and behold my bladder was an angry, inflamed mess with 'twigs' as the urologist called them (I saw the photos).

He also said my bladder is one of the worst he has seen - great! He thought I had chronic infection in the trigone area (called it something like cystitis cystica) and has given me trimethroprim (sp) for that. I have had two cystoscopies over the years, the first one showed chronic inflammation, the second he didn't even do the hydrodistention so told me I don't have IC, the bladder was normall (this was 2 years ago!). Anyway this urologist put 30 injections of botox all over the bladder and said it may take 1 to 2 weeks to work. I am on elavil and cimitidine, and nizoral for yeast. Also cystoprotek two, twice a day. Have been taking marshmallow root tea to try and soothe the bladder lining.

I have had severe endometriosis (had 3 x laproscopies) but apparently it wasn't on the bladder. The endo seems much better and the urinary problems much worse!

I am in so much pain and it all got so much worse after been on antibiotics because I was rigidly focusing on antibiotics, they have only made my problems 10 x worse!

I could really use some encouragement, support and any thoughts on other things that help with the pain and burning, have been so depressed with all this constant pain! Thanks in advance!

[ICNDonna]

I'm so sorry you have IC, but now you know and can take some steps to help you feel better. Are you following an IC diet? You'll find information about diet by scrolling to the top of this page and clicking on "Diet."

I hope you feel better soon.

Donna

[Goldfinch]

Hi Rachael. It sounds like you trust this current uro, so that's good. Will the antibiotic treatment be prophylactic and ongoing? How does he plan to treat the IC? I see you are on Elavil. Does that help? Has this uro suggested other IC specific meds such as Elmiron?

Perhaps the antibiotics didn't make your other bladder symptoms worse--those symptoms just haven't really been addressed well enough. I looked up Cimitidine, and it's an antihistamine that targets the stomach and peptic ulcers. Antihistamines can be an important part of drug therapy for IC, but there are some which may work better for your bladder, so ask your doc about alternatives.

If you haven't tried the IC diet, do so; it's a cornerstone of treatment. It's often a matter or trial and error and can take a few weeks to really kick in but it can really help calm a distressed bladder.

For quick relief of UTI-like symptoms that are the result of a distressed IC bladder (and not necessarily an infection!)--frequency, urgency, burning--the urinary tract antiseptics (UTAs) can be really effective within hours. If you haven't tried any of those types of drugs it's worth checking out. The forum "Treatments for Mild IC..." has several good topics on some drug therapies. And there are a lot of different types of pain meds out there. I hope you can find something soon. Take heart. Finding a good treatment plan after diagnosis can be stressful and can take a bit of time, but most of us find we start to improve at that point.

[RachaelT]

Thanks so much for your responses. I spoke with my uro last night and he was very surprised that I was still in so much pain. He thought the botox injections would of given me huge relief and was somewhat disappointed, like me! He did cautherize (sp?) my trigone which he said would be rather raw for a good 6-8 weeks and I wonder if that's a lot of the pain I'm feeling now? It will scab over then should feel much better. I only had the cysto, botox and cautherization on February 13th so maybe, just maybe that's why I'm not feeling any better. I agree that we may have to juggle about medicines to find the right combination. The antibiotics are for 3 months, 1 x daily. He hasn't given me any urinary antiseptics but I will ask him about them when I see him.

He wants to do a DMSO instillation next week to see if that helps matters - I'm praying I find some relief soon - just so unbearably painful! His plan, so far, is to keep me on the elavil, 30mg a night, cimitidine 1 x day at night, cystoprotek instead of the elmiron (he said some of his patients have had really nasty side effects so wants to see if the cystoprotek will help first). I also have paradex (pain killer, isn't helping) and voltaren (pain killer, also isn't helping!). He is really hoping that the instill next week will give me some relief. He did say we will keep going until you feel better so I do have faith that he is going to do all he can to help me, just want some relief now!!!

I agree I really have to think about my diet and will check out the link above. Also other possible drug therapies.

Thanks again for your responses, really appreciate it! :)

[statesboro]

I just now read your thread. Of course, I did read your response back as well. I would have figured you would have been diagnosed after the first procedure in which all the chronic inflammation was found. What do I know? I do know you have found a good place by coming on here. (although you did state you had checked out the posts for a few years now)OK. We will understand. Many people will not. I am not all happy that you have got IC, but it is still good to know what we have got. (and never do enjoy having it) Yep! I don't know your age, but IC does affect people of a broad range of ages. (and dudes like me, too) Bummer! Ok. It seems like you have got a good urologist by now. I don't seem to have any other suggestions right now. I did view my photo as well. Yuck! I know about needing some encouragement and support because I felt lost at first. Geez! I will let that be all now.