Confused....

[Marmotte]

I don't know if I'm truly in the "newly diagnosed" category. I saw a urologist at Univ of Washington, who said I had "probable painful bladder syndrome." My symptoms certainly aren't as intense as a lot of you here, but there is definitely some sort of problem, including feeling like a UTI but no nitrites, quite a lot of pain, urgency, frequency, nocturia, spasms, etc. (But my bladder capacity seems normal.) I seem to do better on the IC diet, but since I'm vegan it's extra hard. I've had a pelvic ultrasound and CT scan which didn't turn up any Gyn issues. I haven't had a cysto under anesthesia, but a regular cysto was normal, and not particularly uncomfortable.

So here's my question. I get times (like right now) when I have a lot of pain in the pelvic region, and I am wondering if it could be IC related, or if I'm sticking my head in the sand to blame it on that.

The closest I can describe the pain is like menstrual cramps, or even beginning stages of labor, sometimes in the back, sometimes going down the legs, and also sometimes in the perineum. It kind of comes in waves, and is pretty hard to ignore. It often centers in the lower front of my abdomen, just above the perineum; and/or the top of my bum on both sides. This has been going on, off and on, for a couple of years at least.

As any doctor would say, you can't diagnose something without seeing the patient (and, as I've learned, you often can't diagnose even with seeing the patient LOL), but I've seen so many doctors I've just about had it with them. It would just be helpful for me just to know if this sounds typical for IC, or if I should make haste to line up for another battery of tests.

Thanks!

Marmotte

[Marmotte]

OK, well if no one wants to answer this message, please just tell me what it feels like, from your perspective. I'm really looking for answers....

[ICNDonna]

I have often described my IC pain as being like severe menstrual cramps. It sounds like you may be having bladder spasms. A regular cysto will not usually diagnose interstitial cystitis --- my bladder looked completely normal and healthy until it was distended under anesthesia (hydrodistention), at which time the IC was apparent, complete with Hunner's ulcers.

Some doctors refer to interstitial cystitis as painful bladder syndrome.

I'm glad the diet seems to be helping. It's definitely worth it for me. I'm not vegetarian, but I can imagine any kind of diet would be a challenge. Hang in there. You can do this.

Sending warm hugs,
Donna

[nikki0522]

Hi there!

I am not sure what you have but I will tell you my symptoms from when they first started about 7 years ago and I just got diagnosed with it. None of my other dr's wanted to believe I could have this at such a young age (22 now about 15 when it started) I am not half as bad as some IC patients.

Right around my period time I will get a burning sensation and urgency to pee and then when I go it hurts to pee, I have a lot of pressue and my eyes water. If I eat something off the IC Diet (ie;tomatoes chocolate etc) a few hours later I will feel really severe cramps and the burning sensation again. My flares can last anywhere from 10mins-4hours. Since being on medications they are slowly working since I just started them. With my pain I cant sit still because it hurts too much, I just like to pace back and forth till I have the urgency again which is usually seconds later. Before medications nothing would relieve my pain, I would just have to ride it out in the bathroom. There have been times I passed out on the bathroom floor becuase I was so exhausted. Hot baths at the end of my flares but during it they dont help to much. The pain on a scale of 1-10 would be 11, but since starting medications it is about a 3 and my flare(s) last half the time.

I would say if the IC Diet works for you thats your first sign, but I would go to as many doctors you have to till you get an answer. Dont let them make you feel crazy because trust me they will try. Just remember with whatever you have your not alone! I hope I helped! Take care

Hugs!
Nikki

[Marmotte]

Thanks, ladies.

Funny all the little things we never really appreciated before . . . like a glass of orange juice. . . . a bunch of grapes . . . a cup of hot chocolate . . .

One nice thing about following the IC diet.... I was away from home for six weeks and so was at the mercy of someone else's cooking. Most of what was served contained tomatoes, onions, citrus, soy, spices, or some other no no. Here's the nice part: I lost nearly ten pounds! Now one can't complain about that too much!

I've discovered coconut juice. Sweet, refreshing, and although it's not quite orange juice, it's quite nice. And low calorie besides!

[Rocklandgal]

I so know just how you feel. Say you don't eat crazy. But in the "old" days, you could just be walking through the kitchen and pop a piece of something in your mouth. There is no more doing that. You said it so perfectly! How many cups of coffee did I drink and not even appreciate or even taste? A cold piece of fruit on a hot day. I grow strawberries and raspberries to die for. But I can't pop the perfect strawberry in my mouth or a whole handful of homegrown raspberries so I can really get the taste of them. I know there are alot of foods that you can "customize" to be IC acceptable, and I appreciate that, but just to pop into a pizza place and suck down that hot gooey piece of pie. At the holidays watching everyone else have a glass of wine. I mean, I'm not new to this at all, but at times it really gets you down. You have to work so hard on your food. It's not spontaneous any more. Someday I keep telling myself I am going into Dunkin Donuts and have their biggest cup of coffee and a chocolate muffin and the hell with it!!!! I haven't done it, but I think about it at times. Anyone else feel this way. Boy, I have made myself hungry!
Karen