Scared and still no answers-what else could it be?

[artsychic76]

Going on a month with this pain. No infections from the urine tests, antibiotics not working--on Enablex---not working.

I have one good day and then the next is bad, cycling over and over. I'm not sure I can cope with this pain and the waiting.

Fearful...and distraught.

my family and friends keep saying not to worry and it could be other things...what else could it be?

what are the other options?

Does a negative urine test but still having symptoms mean I have IC?

I am not sure I can even wait in this pain to my next appt. with the urologist.

help

[ICLori]

Hi, welcome! I'm sorry for the bladder pain you've been having.

In fact, a negative urine test (meaning negative for any bacteria) combined with continued irritative voiding symptoms (bladder pain, urgency/frequency) is a hallmark of Interstitial Cystitis. Since researchers say 1 in every 4.5 women in the U.S. has IC, it wouldn't be terribly shocking if you were eventually diagnosed with it.

I think Enablex is a medication for overactive bladder (a new name for incontinence) rather than IC. It could be that your doctor is trying to see if you have an even more common ailment that is easily treated - overactive bladder (OAB) before giving you a diagnosis of IC, which is incurable and is not quite as easily treated as OAB.

You are going through the worst of it - the time before a diagnosis and before effective treatment begins.

Please go back to your doctor ASAP, and press for a hydrodistention/cystoscopy under anesthesia, or a potassium sensitivity test, if your doctor does that instead. Or, if your doctor diagnoses by symptoms only, take in a voiding diary (showing him how often you urinate, and in what amounts - if you have an old measuring cup in the kitchen you can afford to throw away, you can use that) and also a pain diary, recording how much bladder/urethral irritation you are feeling. Doctors are all different in how they like to diagnose IC, but those are the three most common methods for diagnosing IC.

Once you are diagnosed with IC, your doctor can begin you on a treatment plan that will hopefully have you feeling like normal again pretty soon.

He might start you on Elavil, Atarax and Elmiron. Elavil and Atarax work quickly to relieve your symptoms, but do have some side effects, and Elmiron is a medicine that coats the bladder over time (six months or longer) and is effective in some IC'ers, even to the point, in some, that they no longer have any symptoms at all.

All of the IC meds available, work for some IC'ers but not others. Sometimes you have to try more than one or two meds, to find the one that works best for you. So you do need patience. And sometimes you run into a doctor who really is not very knowledgeable about IC, and you decide to go to a different doctor.

Anyway, although I'm certainly not a doctor and even if I were I could not diagnose you over the internet, it sure sounds like you might possibly have IC, and whatever it is you do have, you need treatment so you won't be in pain anymore, and you need to know for sure what it is that is wrong.

Hopefully someone will post soon with good links to self-help strategies, and information about treatments for IC, etc. You'll find a lot of help and support here, if you do end up having IC and wish to remain active on the boards.

Blessings,
Lori

[SandyRN]

Just wanted to :welcome: you to the board. Lori gave you great information and the only thing I can add is to tell you to keep coming here, definately read the patient handbook and diet and ask tons of questions! There is a great bunch of folks here!!

Sandy

[traceann]

Hey there and welcome! I agree with the ladies, and what Sandy said is right on - keep coming here, read the handbook and hopefully will help you be prepared for your doc appt!!

[kuntrygurl78]

I just wanted to welcome you here. I know what you are going thru. My symptoms started in December, and I didnt get diagnosed until March. It was very hard. I probably imagined a thousand things that I had wrong with me. Once they get you diagnosed, things get easier. The next step is just getting you on the right combo of diet and meds to get you back to normal again. Have faith and good luck!

[artsychic76]

Thanks for your replies.

I AM SO AFRAID THAT I DO HAVE IC. I don't want to have it--everything I read is unclear as to what works, and I fear having to live this way in pain.

I called my Urologist on call today and he said to take the amitryptaline, increase enablex and continue the antibiotics. He said that I did have some bacteria on my urine culture (he thinks it could be contamination) so he did mention a Cystoscopy to see inside and see what is going on--if there isn't some infection still there. He said if these things aren't working maybe we "will have to move toward IC". which to me, seems like the worst case scenario. A life long chronic pain illness???? How can I go from healthy to this? I'm not sure I can cope with the pain and also mentally from the worry of my future being spent in agony and illness.

Has anyone ever narrowing of the ureter tubes? Can they only detect this by a cystoscopy? They did a cat scan (with the dye via IV) and xray and it showed nothing. I've also have 2 full pap smears with normal results.

I noticed some discharge and they told me to treat a 3 day yeast infection cream which I did and Im not even sure I really had one. I notice a bit of discharge now, but it could be the cream still.

I'm not sure I can cope with a life long illness. Many of you seem to be coping well, and I'm not sure I'm going to be able. I have so much fear and worry.

[kuntrygurl78]

I remember how scared I was when I was diagnosed in March. I know exactly how you feel.

One thing to remember is that there are many many people in remission out there. Many of them dont come to the boards because they are feeling fine and dont need the support. Then there are people like me. I was diagnosed and in pain. Now, I have realized that my case is very mild. As long as I stay way from my trigger foods, keep the stress down, and take my meds, Im as normal as the next gal. Just because you are diagnosed with IC doesnt mean that this is the worst case scenario of the disease.

Be thankful that your pain and discomfort have a name. If it has a name it has a treatment. If it has a treatment, then there is hope that you too will go into remission. :angel:

[Claredale]

Welcome to the boards. Like everyone has said, the worst part really is getting the diagnosis. IC can be scary and we have all felt helpless and frustrated many times, but this site is very helpful with every aspect I can think of.

Tracey

[artsychic76]

I'm feeling sooo skeptical that they can even figure out what I have. I dont want to have IC. I am too young to face a life long illness. I feel trapped and like my world is slowly getting smaller and closing in on me.

The only thing that helps is to lie in bed all day with heat on it, as soon as I do anything, it hurts. The pain never really stops.

How can I live this way?

I haven't had any children yet, and I feel like that dream will be squashed b/c of all this pain.

I really doubt my ability to cope.

Feeling lost and I can't thing of anything to help me.

[ICLori]

Hi, Artsychic, it's totally understandable to feel afraid, and to worry about whether or not they will be able to diagnose you. It's also normal to be sad about the idea of possibly having a chronic illness that is incurable.

But - please have hope! I have never heard of a case of someone not being diagnosed with something (whether it's OAB, IC, or PFD) because doctors seem to have this aversion to writing "I don't know what the Sam Hill she's got, beats me...shrug..." on the patient charts. So I am very sure that you will have a diagnosis pretty soon. It may not be the diagnosis you want, but it's okay - life goes on even with IC.

So many people really have gotten better, and left the boards, or never sought out these boards. I am the only patient my urogyn has ever seen, who didn't respond wonderfully to the standard trio of Elmiron, Atarax and Elavil. As he said, "you're my only patient who has gotten this far..." Meaning I'm the only one still looking for my medicine that will make me feel normal again.

I think it is very, very, very rare for a patient to not find a med or procedure or something that helps them feel normal or very close to normal most of the time. I know you are feeling kind of lost and scared right now, who could blame you, but please hang in there, trust your doctor, and let him figure out what your diagnosis is, and then work with him to find the medicine that makes you the most comfortable.

That feeling of being in pain unless heat is applied, is one that is very familiar to me. I spent a couple of years on the couch or in bed, with a hot water bottle between my legs, but things have been better lately (thank goodness.)

There are IC'ers who have delivered healthy babies even with IC, and have been able to be good mothers and live their lives fully.

Most IC'ers, once they find the right meds for them, feel comfortable most of the time.

You won't HAVE to live your whole life in pain. Today, yes, tomorrow, maybe, depends on how soon you and your doc find the right treatment plan for you, but...next year? I don't think so - I think within a year, you will be pain-free all the time or nearly all the time. Probably much sooner than a year. I'm just picking that date as a time when I'd be very very shocked if you weren't much better.

Blessings - hang in there, it will be okay, I promise - you can cope with this! :)

Lori

[artsychic76]

Lorie--

you are kind to listen and reply to my post.

I do hope they can decide what the best course for me is--my tolerance and ability to cope with this is weakening. I fear the worst case scenarios that leave me a different person and unable to live my life. I realize that this does not help, but in the state I am in right now, I just don't know what to think.

I did look up the medications you mentioned, so many of them seem to have harsh side effects and it also isn't clear if they can be taken in pregnancy.

The atarax looks like it's not recommended for long term use? And the Elmirol-hair loss alone scares me. The Elavil that I'm taking makes me very drowsy, but did help a bit this morning and I rested for a few hours.

I still can't wrap my head around being healthy one day, having something like this the next. I guess I've always thought that illnesses can be treated and usually cured. Facing this is the worst thing I've ever experienced.

What questions would you ask the Urologist tomorrow?

[DoulaSue]

I just want to say that you are not alone, I am going through almost the exact same thing right now. I have my first Urology appt. today, I'm thankful to finally be going, hoping that help is on the way, however I'm also terrified that I'll be diagnosed with IC, or bladder cancer. I've been in pain for exactly one month today, and blood has shown up in my urine at 3 Dr. visits (no bacteria, it's not a UTI). This happened "out of the blue" one morning when I peed blood so badly it looked like the toilet was filled with blood. The blood stopped after a day, however they are still picking it up with urine cultures. The pain at first was horrible, it hurt when I peed, felt constant pressure and my urethra was killing me. The pain has lessened somewhat over these 4 weeks (it no longer hurts when I actually pee), however, I constantly feel the pressure/frequency feeling, my back hurts alot sometimes, and my urethra is very, very sensitive.

Like you, I'm suddenly very aware how this is affecting my daily life. I'm cranky, not myself, worried, and have never had to deal with daily pain in my life. My husband is worried about me, I'm worried about having sex, I'm worried about everything I eat... you get the picture.

Basically, this just sucks. Part of me is so angry that this just "happened" and I have no control over it. I'm sick of feeling this way, hoping every morning when I wake up that it will be gone, yet wanting to cry the first time I feel the all too familiar "twinge" in my bladder. Trying to stay optimistic, but it's hard, I have a short fuse and I just want to crawl into bed and cry.

I'm hoping to get on the right course today after my Uro appt. Wish me luck, as I wish the best to you, too.

[artsychic76]

They did a cystoscopy today in the office, with the one where they added water.

He said, "there is some bacteria near the opening of the urethra" and that the inside of my bladder looks normal, no signs of cancer or ulcers or anything".

They have done countless urine tests all with negative results, yet when he goes in and SEES bacteria, I can't see how the urine test misses it.

The pain is right at the front, near the opening, not deep in my bladder if that makes sense.

He also said the tubes were a little narrow, but didn't seem as if that was the issue.

How can it be IC if there is bacteria?? He didn't know what kind of bacteria this is and said the results would be back Friday. Yet, each time I call to find out, they tell me negative. It's so ridiculous.

Anyone ever hear of someone with IC having bacteria there? He said typically with onset of symptoms like mine, most patients do resolve it, and he didn't see any damage in the bladder itself. This does make me hopeful, but also scared that I may have IC despite this.

thoughts?

[Smacciemac]

That is good news I think! I'd rather have a bacteria than a damaged Bladder.. I would hope thats what they find in me as well!!

My discomfort is only at the end of my urethra too.. not that it means anything. 2 weeks and 6 days until my test and counting..

[artsychic76]

I agree Mac, I would think that bacteria IS better than having a damaged bladder. But still, they look at me like it's a mystery and are unsure if its IC or not. He said "It could be IC" but didn't offer any other explanations. So I wait for another urine test to come back (I've done this about 6 times now) and then they call and say "its negative for bacteria", yet he SEES bacteria there, I just don't get it.

I also asked about the urethra (tube) being narrow and he said mine was a little narrow, but didn't think this was the issue. I would think it would be a factor.

What I hate about this whole IC thing is that is is SO UNCLEAR and SO DIFFERENT for many people. I asked him the next course of treatment if I do have it and he said to try the Elmirol again (but from what I understand it takes time to work/also coats the bladder and if mine isn't damaged I can't see how that helps).

Do I just believe that I keep getting bacteria infections that never totally clear?

I just don't get it.

[aprilmae]

So I am not the only one opposed to Elmiron. I have decided not to seek that as treatment yet because my bladder does not show damage and what if one day I do need it as treatment then I want it to work. The unfortunate part for me is that I cannot take Elavil which helped my pain and frequency - I had very bad side effects - I turned into the devil! :evilsmile