Interstitial Cystitis

[Guest]

My GP has recently referred me to a urologist but will be a few months till I get in. I have had 3 UTI's in the past 5 months and have also had symptoms when there is no infection. I am suffering from severe abdominal pain and uncomfortable urination, but also cloudy urine with an unpleasant odour. I don't see these symptoms associated with Interstitial cystitis
Anyone with ideas??

[Guest]

Hi..I am trying phenazopyrid, d-manitose, grapefruit seed extract, uvi-ursa....neurontin, muscle relaxers and it helps until I can get to a urologist. I need to know what you learn as this is a puzzling disease and I want to go the right rout...I also have Fibromyalgia. My sister and brother also have it and have gotten Hodgkins Lymphoma with it. My sister has Kidney cancer that did not respond to 7 chemo treatments. Let me know what you find out. [moderator note: e-mail address has been removed] Thanks

My GP has recently referred me to a urologist but will be a few months till I get in. I have had 3 UTI's in the past 5 months and have also had symptoms when there is no infection...

[drwenski]

My personal opinion is that anyone who has 3 UTI's within a 3 months time should have a cystoscopy to rule out/rule in IC.

[Dori]

As someone who was recently diagnosed with IC all I can say is there is no hurry to the official diagnoses since educating yourself & changing your diet are the best approach to a pain free existence. Awareness that this could be the issue is most of the battle since it is something that you primarily have to manage versus a miracle cure. I would recommend reducing acids in your diet because that is the main course of treatment. The major A-HA moment for me was finding out that when the pain set in that I should NOT reach for the cranberry juice like my mom & grandmother had taught me. It seems I was pouring gasoline on the fire. The pain & inflammation would become so great after my home remedy that I could barely walk or button pants. I was reduced to stretchy clothing and walking like Frankenstein. Good luck & Godspeed in your journey to good health.

[chippewas]

Yes, you can have urine that is cloudy and has a bad odor with ic. I do.
seeing the urologist is the correct way to go. good luck.

[Elbow]

I was just diagnosed with IC three days ago. Like you, I had been to my doctor four or five times this year for what I thought were re-accuring uti's. I'm embarrassed to say that I had never heard of IC before this week, so you are ahead of the game.

I had always had negative urine samples and was getting frustrated by the pain I was experiencing when urinating -- which was also cloudy and kind of smelly. I too had abdominal pain, but I associated it with my IBS -- now I know it is a symptom of both IC and IBS. The biggest thing i've learned this week is that everyone's symptoms, while seeming similar are really different when it comes to IC, so you never know.

I made an appointment with a urologist, but I could not get a new patient appointment for 2plus months, so I called several times a week to see if someone had cancelled. I was able to see the urologist a week after I tried to make an appointment. I would highly suggest you do the same, it can only speed up the process -- especially if you have painful symptoms right now.

In the meantime, I would recommend not drinking any alcohol and avoid highly acidic foods like tomatoes, citris fruits, cranberry juice, and vinegar if you have any pain. Good luck!

This site is wonderful, by the way, for anyone new to this disease who needs to begin managing their diet. http://www.ic-network.com/handbook/diet.html

[drwenski]

I disagree with the no need to hurry for and official diagnosis,it empowers you to KNOW exactly with what you are dealing with.It has been my experience that few doctors really appreciate how debilitating IC is to a persons quality of life.

[llthomas47]

I had the same problem with several UTI's the past two years. Then the last two I thought I had were not infections at all. I recently had a hydrodistention and it confirmed that I have IC. I can't say that it the procedure has helped. I remember the urologist asking me if my urine had an odor and at the time I said no. But I am noticing that it does now.

I've been taking Prelief (acid reducer), but I can't say that has helped either. I also take an AZO tablet which sometimes helps with the discomfort. The doctor prescribed an antidepressant Imipramine, but after reading the side effects I've decided not to take it. He then suggested Elmiron which I am debating on - one side effect is loss of hair.

I would like to hear from someone who has taken either one of these drugs, what side effects they have experienced and if they work.

[drwenski]

I took the elmiron for 18 months 6 years ago and all it did for me was make my hair thin and fall out.I do know that some people have had success with it though.The problem is you have to take it a while before you will see results.I take elavil 50 mgs at bedtime and that has helped with the pain.For me the only thing that has lasting relief is the supra pubic catheter I had put in 6 years ago.I have no pain whatsoever and can eat whatever I want.The only thing that seems to cause a bladder burn for me is pop,I don't know if it is the citric acid in it or what but I just do not drink it at all.

[sadone]

Hello,
Make sure you see a urologist as it could be IC and book a cysto to prove it is IC.
Having many uti's is not normal and having symptoms of a uti's when it does not show up after lab work is done is a pretty good sign that IC is present.
I am not a doctor, only a patient with IC.
It took me several years of thinking is was period pain, stress, busy lifestyle that caused all the pain and pressure in the abdomen and pelvic area. After having three kids, maybe my body was just getting weak and tired.
Only recently did my body shut down and I realized there was something really wrong with me.
Flu like symptoms, urinating all the time, and feeling pressure and pain down there. Spastic pain on the right side of my body, shooting down my right leg and pulsating in my right foot. This was very coincidental that all the pain was happening on the side where my bladder was located. Well the cysto proved that it was IC and all these years I was not crazy with this unpleasant pain in my abdomen. You basically get used to the pain after so long.
The pain gets progressively worse with onset of your menstrual cycle. I always wondered why the pressure to urinate intensified at this time of month.
Good luck

Sad One