Please Help! I don't know what's wrong with me!

[alker]

Hi, I would appreciate any comments ... my condition started early November. At first it seems like menstrual cramps, although i was not supposed to have them. Then it started to feel lik bladder infection and my urine was showing high levels of leukocytes but no bacteria. I got prescription for cipro, but that didn't help. I went to OBGYN and she thought everything was OK from her end. Just went to the urologyst last week. He listened to me, did internal exam (which was painful) and then said that he thinks so far everything looks normal and scheduled me for the ultrasound. I have constant pelvic pain. Sometimes it feels like cramps, sometimes burning sensation, sometimes everything together. Some days I go to the bathroom 17 times, sometimes I don't. Sometimes it burns little after I urinate, sometimes it doesn't. Can this bc IC? I never had any issues with my bladder before. Thank you in advance!

[dyno]

Welcome to the ICN.:hi:

At this point it is too early to say if this could be IC. You are doing the right things though in going through the tests to eliminate other conditions. I know that not knowing is tough but it is a process to get to the answer of what is wrong. Hang in there and if you have other questions please feel free to ask.

[statesboro]

I am gonna start by giving you another welcome. Of course, I actually wish IC never existed and that we did not need the message boards at all.(although I am glad we do considering it does exist) I still know you have found a good place where we will understand. Many people will not. It nearly kills me sometimes to read about another person being diagnosed with, or even suspecting, IC. Yep! Oh! I can't say for sure what you have got now. It could end up being that you do have IC . At least, you do know about IC by now. I had never heard of it before being diagnosed back in 1997. (and no bladder issues before) Yep! I don't know when you are scheduled to have the ultasound, but I feel sure you will post some more. We don't enjoy IC, but it is still good to be properly diagnosed. OK. I won't keep rambling now. I will let that be all now.

[KarenAnne]

:welcome: There are several conditions with the same symptoms as IC. And most IC patients all have different symptoms themselves. IC is a diagnosis of exclusion. Your urologist has to rule out other things first. It can be a frustrating experience. I will pass on info that I wish I had had in the beginning--try the IC diet while you are waiting to get your tests. It can't hurt, & may offer you some relief. You may see some connection between your symptoms & the foods & beverages you consume. This info will help your dr. with his diagnosis. Please keep us updated & good luck.

[alker]

Thank you for the replies. I really appreciate it. I have an ultrasound of bladder and kidneys today and the tech said everything looked normal as far as she was able to tell. I now have to wait to see my urologist next Tuesday, but it seems that nothing wrong was identified. My pain right now is probably around 5. Constant desire to urinate, fullness of the bladder and kind of burning sensation. Does anyone know what exactly I should not eat on IC diet and also how fast does it take to work? Thank you again!

[KarenAnne]

To find the diet, go to the top of the page under "Patients" & scroll down to the diet. Try eating food from the bladder friendly section. Especially avoid coffee, teas, chocolate, tomatoes. I drink Deerpark water, but everyone here drinks different spring waters, some use a Brita pitcher. I noticed a difference right away, because I was drinking green tea thinking it was helping, & eating pizza & take out because I was too sick to cook. My first urologist had told me that diet didn't matter. (?!) But the full effect of the diet took about a month because my bladder was so inflammed.

Jill's videos are also great to watch. Research as many old posts as you can. The support leaders on here are wonderful & full of reputable information. Write out a list of your symptoms & what makes them worse to take to the urologist. Get copies of all test results & start keeping a file of everything. If you feel overwhelmed & too ill, get a trusted friend, spouse, or family member to go with you to the urologist. I found it hard to remember everything the dr. told me, I was so overwhelmed & exhausted from having to urinate every ten minutes around the clock. There was no way I could go alone.
There are good products in the ICN shop. When diagnosed, I purchased the new patient pack. Dr. Moldwin's book was a good source of info. There are physician lecture videos on here as well. Again, check out Jill's videos. Best wishes.

[ICtampa]

This sounds exactly like what happened to me before I was diagnosed with IC. I'm not saying you have it for sure but just trying to give you some piece of mind that you aren't going crazy!

I, too, had bad lower pelvic pain and I thought I was pmsing but it wasn't around my period.... My urologist made me first do an ultrasound to check for kidney stones and didn't see anything wrong with that for me either. I then did a CT scan just to make sure there wasn't something going on we didn't see on the ultrasound..that too came back normal.

I felt decent for a while after that but when the bad pains came back on full force I was back in his office and he gave me a cystoscopy, which ALSO LOOKED FINE. However, because of my urine cultures ALWAYS coming back with no bacteria and leukocytes he made the diagnosis.

If you have any more questions while you are going through this, I know how hard it is...you can private message me or write me back on here!!

hope your pains are getting better!!

best, kate

[ICNDonna]

It does sound like what you have "might" be IC, but not necessarily so. One thing you can do is to give the diet a try --- it might help and it can't hurt.

Warm welcoming hugs,
Donna

[alker]

Thanks Donna. I have been avoiding coffee, wine and citrus for the past couple of days. Do you know how long does it take for the diet to work?

[ICNDonna]

There are other foods and drinks that can also be a problem --- you will find the diet information in the Patient Handbook. I suggest you stick with it closely for at least six to eight weeks to see if it helps.

Donna

[alker]

Thank you Donna. So I guess I was wrong thinking that few days of the diet will show changes. I thought that since the urine is no longer has any of the irritating agents, the pain will go away :). Thanks again!

[Calinda]

Hi,
I'm glad to see you are going to try the diet. For me it worked fairly quickly, however, I think it also depends how bad of IC you have. I don't think I have a severe case. It's definetely worth a try.

For me, at first I had pain in the pelvic area and so I couldn't tell where the pain was coming from. Like you I went to the GYN to see if I had any problems with that. Another symptom many have with IC is longer and more painful menstrual cycle pain.

Sometimes pain is hard to tell exactly where it is coming from. I'm so glad that you are getting checked out to at least eliminate other things.

Hope it all goes well for you,

[alker]

Thank you - can you please tell me how long is not long? :). Also, what specific food did you eliminate? Thank you again!

[dyno]

If you look in my signature line you will find a link to the Handbook that has the diet in it. We have a wonderful diet reference in there that should help you. Everyone is so different and like Donna said, give it a try for 6 to 8 weeks.

[Goldfinch]

Food and drink affects everyone a bit differently. The best way to figure out how diet sensitive--and to what--you are is to stick to an elimination diet. Eat a healthy but simple diet, following the first list of well-tolerated foods. For me it was six weeks before I really felt my bladder calming down. Then you can slowly and carefully start adding back one food or drink at a time.

One piece of advice from a uro who didn't think I had IC (he was wrong, but very nice) was to eat a low-acid diet. He suggested giving up coffee and red wine and citrus and cranberry long before I had ever heard of the IC diet. The truth is, IC or no, your bladder is pretty irritated and anything you can do to calm it down can end up being helpful. Remember to keep drinking lots of water--whatever water seems to work for you. You want to dilute the acidity of your urine, and dilute the toxicity of anything your bladder doesn't like.

For the first few weeks on the diet I ate poached chicken, chicken soup, rice, noodles, carrots, zucchini and buttered toast or bread. And not much else. Then I introduced oatmeal and milk and pears! That was an exciting week. Read as much as you can on this site and you will find answers to almost all your questions.