Anyone have interstitial cystitis?

[lolalolalola]

I assume I have this- the last time I went to a walk-in for a UTI, the doctor suggested that I have it. I'm seeing my own doctor next week about it. It's gone from happening once every few months to constant- I've been in pain and peeing blood for the past week, on and off (I can flush it out with lots of water but it comes back a day or two later). Dr google tells me there's not much that can be done. Looking for some personal experiences to see if there's I should be asking my doctor about it.  

[wakka]

Wow, are you sure the blood is related? My mom has this but never with that symptom. Are you sure it's not your kidneys and shouldn't be checked out asap?

[wakka]

Oh, and while she has had some bad weeks, she's currently in remission with almost no symptoms. I hope that helps a little ...

[heliocentric]

Several years ago I used to get UTIs nearly once a month and my doctor suspected IC. Turns out it really was just UTIs and I found a treatment plan that worked to stop them. The first one I ever had caused blood in my urine. When you go to the walk in do they do a culture each time or just prescribe antibiotics? A culture will identify whether or not bacteria is the cause and what type. Maybe it's just a UTI from a bacteria strain that is resistant to whatever antibiotic you've been taking? If there are no bacteria, then it sounds like it could be IC.

More recently I was having bladder pressure and frequency that I linked to drinking too much tea. (I kept a diary.) I've not had any coffee or tea for a month and I've been fine since. The doctor said both are highly acidic and can cause bladder irritation. She didn't say if my issues were related to a mild form of IC or something else. (And I didn't ask because I was feeling better.)

If it is IC my understanding is that it can take trial and error to find what works, but there are treatments. Diet changes apparently can be very helpful. Maybe you can keep a diary of foods / beverages and symptoms to see if there is any correlation? It will also give you something to share with your doctor. The IC websites can give you a list of foods that are most likely to be troublesome if you want to experiment with avoiding them in the meantime.

If you're family doctor can't help you, seek out a specialist. If you happen to be in the Philly area I can give you my doctor's name. Good luck. I know it's frustrating to feel terrible and not know the cause or how to fix it.

[lahoagie]

I have IC. I got diagnosed by a urologist. He did a scope of my bladder and found hunner's ulcers/lesions. I control the symptoms by my diet. I have cut out caffeine and spicy food and greatly limit acidic food and carbonation. I take prelief and have found that to help when I do have acidic food. Also, soy (especially soy sauce) is a trigger for me so I avoid soy and do not eat soy sauce.

I never had blood in my urine so definitely talk to a doctor about that. Also, all of my test for a bladder infection came back negative.

Let me know if you have any questions.

www.prelief.com/

[lolalolalola]

Thanks all. The last 2 times I went in for a UTI there was no infection found in the urinalysis. They ended up going away on their own - this is the first time it's lasted so long.

I appreciate all the info.

[elynne2012]

Well, clinically, the urologist says I do not based on a scope. What happened was about a year ago, I got a UTI and it just didn't go away, the symptoms - the pressure, the pain, the frequency. They lasted about 3 months. I tried antibiotics, cultures, other tricks but it just didn't work. I was referred to the urologist who said she didn't think I had it. My PCP thinks I do have it. I have an antibiotic I take post sex just to avoid getting any infections in the future.

good luck and makes sense to get to a urologist soon.

[cuppacoffee]

Lurker here. I had IC for YEARS. It was the most horrible and painful time of my life. Mine started exactly the same, lots of UTIs that were never actually UTIs. Did the cystoscope and they said it was IC when I was 23. I tried everything. Most people's IC is heavily impacted by their diet but mine was never diet related.

I went into remission when pregnant with my son and (thankfully) have only had about 2 flares since.

What worked for me: Bladder instillations. My urologist used a weird cocktail of DMSO, heparin, sodium bicarbonate, lidocaine, and 2 other drugs I can't remember. I would go once a week for three weeks, then break for three months, then do another treatment round, etc etc. Make sure when they give you the catheter they use a small or kids size.

Also, my doc would call in heavy painkillers when I would flare until I could get into the office for a treatment. If you happen to live around South Jersey I'd love to give you my doctors's name. He was life changing.

[starryfish]

Please get your kidneys checked out (simple blood test) and if they are ok then you probably have IC. I have kidney disease and IC. Kidney disease I had no symptoms except blood and protein in my urine. Diet changes have helped me. I'm currently nursing so I can't do any of the meds right now

[heythere]

Might seem random but I was having irinary type symptoms and it turned out I had a bad case of BV that didn't have the tell tale smell. It was treated and came back but once I kicked it the other symptoms went away.

Good luck. I hope you feel better soon.

ETA: I've also had urinary symptoms including some blood with very small kidney stones.

[okla]

Apr 4, 2017 12:21:27 GMT -5 lahoagie said:

I have IC. I got diagnosed by a urologist. He did a scope of my bladder and found hunner's ulcers/lesions. I control the symptoms by my diet. I have cut out caffeine and spicy food and greatly limit acidic food and carbonation. I take prelief and have found that to help when I do have acidic food. Also, soy (especially soy sauce) is a trigger for me so I avoid soy and do not eat soy sauce.

I never had blood in my urine so definitely talk to a doctor about that. Also, all of my test for a bladder infection came back negative.

Let me know if you have any questions.

www.prelief.com/

Pretty much ditto for me. With the exception that I'm not on any specific IC meds, though. I tried something last summer and it sucked all moisture from my skin, mouth, lips, etc. and didn't make much difference so I stopped. I was prescribed Zoloft for anxiety around the same time and going on that helped a lot. My PCP mentioned a serotonin connection with IC, so maybe that's why it helped. I'm no longer on Zoloft, but my symptoms are still better. Also quit diet DP recently which seems to have made a difference. I get flares when I drink too much booze and have too much acidic food.