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  • OllieR
    replied
    Hey bri! Yes, being diagnosed is extremely overwhelming and looking back I probably didn't help that with my wordy post lol. I guess my best advice is to just focus on the step(s) directly in front of you.

    Getting diagnosed is a quandry to, I imagine, just about all IC patients. Partly because doctors and uros all have their different opinions too. If you get the in-office cysto, it is not as intense as going under for the full hydrodistension. Like earth said, it will rule out other conditions. Some uros will start treatment after this, basically saying, well since it's nothing else it must be IC.

    However, sometimes doctors need specific information that can only be revealed by a hydrodistension, such as bladder capacity, severity of the pin-point bleeding glomerations that so many ICers have, ulcers, scar tissue, and sometimes a small (relatively painless) biopsy. For some ICers, the hydrodistension really helps stretch the bladder and can reduce their pain and frequency (I know ICNDonna has had success with this). The only problem is that you don't know until you try. I recommend, if you do it, making a plan for just in case your pain increases temporarily after the procedure. This will make you more comfortable. Except for a rare handful though, the hydrodistension is either good or non-eventful and any flare goes away in a couple days.

    You mention a pain on your ovary. I have had ovarian cysts before. They are relatively harmless and besides some pain go away on their own. But you should ask your gynocologist about that for sure to make sure. I'm not sure about the pain in your lower back and leg. That could be caused by several different things, including IC. You definitely have symptoms that could fit into IC, but that is why a lot of doctors do the cysto - because this will show any other problems. I also had a CT Scan, abdominal ultrasound, and x-rays. I would see both a uro and a gyno - between the two they will recommend the tests you personally need. Oh, and I was tested for STDs too, even though that was highly unlikely.

    The most important thing I can say to you though, is to take in the advice of your peers and your doctors and others in the medical community, but only do what you want to do and what you are comfortable with. It is your body after all. Oh, and with a little relaxant the cysto will be fine. I did mine without one and was more scared than I needed to be (I was younger and held a teddy bear haha). Keep us posted!

    Leave a comment:


  • bri1121
    replied
    Its worth a shot!! Thanks

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  • earthlady
    replied
    I told my dr. since I have an extremely sensitive bladder I wouldn't have the cysto without some kind of mild sedation. Versed is what they give you for colonoscopies and endoscopies. Your not out like general anesthesia but you don't remember any of it. It relaxed me really well, and I wasn't groggy at all afterward.

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  • bri1121
    replied
    So you just asked for the sedation? I am not sure I like the idea of that but maybe something to relax or something?

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  • earthlady
    replied
    The only reason I agreed to the cysto was to rule out bladder stones and or bladder cancer and possibly ulcers that could be removed. I asked for sedation for the cysto (Versed), and since I did well with the sedation he also did a hydrodistention. I had urethral burning afterward but the pyridium took care of that in about 20 minutes. I was fine after that. I won't have another one though - one was enough. They can diagnose on symptoms alone now according to the new AUA guidelines, so unless they have a darn good reason they're not going into my bladder again with a camera or anything else.

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  • bri1121
    replied
    I wonder if I should just ask to go for the cysto with hydro? If it comes to that. Why go through a cysto just to have to go again?!

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  • bri1121
    replied
    Originally posted by OllieR View Post
    Hey, sorry you are having a hard time with the doctors. Unfortunately, this just seems to happen. The doctors are very busy, and that's not an excuse, but just so you know, you're not alone. Always speak up if something is bothering you, like "hey that cath hurts," the worst that will happen is they'll say well there's nothing else to do about it!

    But you can look on here. There is an ad for Flo Cath Quick Caths. They are small, latex-free, intermittent caths. I have very severe IC and even I can tolerate those well. Sometimes the doctor office doesn't want to order in one kind specifically for the patient, but before I did home caths the uro would write out a script for the special caths and I would bring them in. Also make sure you are getting the smallest type possible. They usually shove in a bigger kind even though that's obviously going to send an ICer into horrible pain. I never did understand that. Also, hopefully you will be like me. When I was newly diagnosed they did some clean catch samples just to make sure they weren't missing something. Now, I can't even remember the last time I did a clean catch sample.

    But yea, cathing will flare IC big time. Did the dr. give you anything like prosed DS or pyridium? These are non-narcotic pain relievers that relieve bladder pain and spasms. You can also get AZO standard over-the-counter. Many people get pain relief from the non-narcotic elavil and I get relief from spasms from a muscle relaxer. Some people also get valium suppositories. OK, that's probably a lot, but just know there are lots of options out there! It's rough at first though, I really wish ICers were treated a bit better, especially at the onset of diagnosis.

    No, you cannot see IC on a bladder ultrasound. The only way is for them to do a procedure under anesthesia called a hydrodistension. There is a whole forum on this - look it up. You'll find lots of good info on the difference between hydrodistension and office cystoscopy and how IC is diagnosed. All your pain *could* be from IC, but it's definitely best to rule out anything else. A symptom of IC can be urinary retention (the inability to completely empty your bladder). Personally, I would ask your doctor more about it. If he is monitoring you, then it's OK, but if retention gets out of hand you don't want to deal with the consequences (believe me, I have, and it's *not* fun lol!)

    Sorry if this is too long. Your questions reminded me a lot about the confusion I had when I was diagnosed. If there's anything else you need you can ask. You'll get a lot of support here and it's good to be learning things about IC because that makes doctor visits go much better.

    Ollie.
    I didn't know urine retention was a symptom of IC? When I heard that I had some left over urine, I thought maybe that was my problem. Could urine retention cause a painful bladder?

    I don't know I am so confused! I don't know what to think. I am sick of going to the doctors and all these tests.

    Oh and no I got nothing before the clean catch. He was just like lets do this. All in all it wasn't so bad but the after was. I wonder if it is normal (for regular people without IC) to have pain and burning and all that fun stuff. Or is it possibly because the IC?

    Do you have any other abdominal pain? I have been having some and originally thought it was because of UTI's, but since it seems I never had one , that is not where the pain is coming from. But I am guess a UTI causes pain because your bladder is swollen/irritated? So could it also be because of IC?!

    I have too much going right now, I don't know where to start!

    Leave a comment:


  • Jinny Jean
    replied
    Trust me I had tons of problems at first as well. WAS THE WORST 6 MONTHS OF MY ENTIRE LIFE. I saw about 20 drs and STILL didnt have a definitive diagnosis, partly because of my choice (in NOT getting the hydro) but because they just had NO CLUE. Evetually I was diagnosed "on symptoms alone" and given Elmiron. Anyways, when I had my cytoscopy i was also told I had a perfectly normal bladder! Well I must tell you there is nothing normal about it. Lol. Hang in there............ I hope you dont have IC but if you do, this place is a god send. About the herpes think I read in your other post, (or maby it was someone elses post) but just to clarify for then as well!! They tested me for this as well! I think it was negative (I was delirious) but they did say that this can cause some urinary stuff and pain etc....I know how scary this is... I spent three days in a hospital and NO ONE COULD TELL ME WHAT WAS WRONG...

    Trust your gut though, RESEARCH all you can

    Jenn

    Leave a comment:


  • fivefoottwo
    replied
    After I had my cystoscope done the pain was terrible. My regular doc would not see me because his nurse said I could have a puncture or bleed from the test. Getting through to my uro was impossible. I ended up taking Pyridium, (Azo), for the pain until the discomfort of the test wore off. Good luck in the future. IC is a strange ailment to have but we have to keep fightning it off.

    Leave a comment:


  • OllieR
    replied
    Hey, sorry you are having a hard time with the doctors. Unfortunately, this just seems to happen. The doctors are very busy, and that's not an excuse, but just so you know, you're not alone. Always speak up if something is bothering you, like "hey that cath hurts," the worst that will happen is they'll say well there's nothing else to do about it!

    But you can look on here. There is an ad for Flo Cath Quick Caths. They are small, latex-free, intermittent caths. I have very severe IC and even I can tolerate those well. Sometimes the doctor office doesn't want to order in one kind specifically for the patient, but before I did home caths the uro would write out a script for the special caths and I would bring them in. Also make sure you are getting the smallest type possible. They usually shove in a bigger kind even though that's obviously going to send an ICer into horrible pain. I never did understand that. Also, hopefully you will be like me. When I was newly diagnosed they did some clean catch samples just to make sure they weren't missing something. Now, I can't even remember the last time I did a clean catch sample.

    But yea, cathing will flare IC big time. Did the dr. give you anything like prosed DS or pyridium? These are non-narcotic pain relievers that relieve bladder pain and spasms. You can also get AZO standard over-the-counter. Many people get pain relief from the non-narcotic elavil and I get relief from spasms from a muscle relaxer. Some people also get valium suppositories. OK, that's probably a lot, but just know there are lots of options out there! It's rough at first though, I really wish ICers were treated a bit better, especially at the onset of diagnosis.

    No, you cannot see IC on a bladder ultrasound. The only way is for them to do a procedure under anesthesia called a hydrodistension. There is a whole forum on this - look it up. You'll find lots of good info on the difference between hydrodistension and office cystoscopy and how IC is diagnosed. All your pain *could* be from IC, but it's definitely best to rule out anything else. A symptom of IC can be urinary retention (the inability to completely empty your bladder). Personally, I would ask your doctor more about it. If he is monitoring you, then it's OK, but if retention gets out of hand you don't want to deal with the consequences (believe me, I have, and it's *not* fun lol!)

    Sorry if this is too long. Your questions reminded me a lot about the confusion I had when I was diagnosed. If there's anything else you need you can ask. You'll get a lot of support here and it's good to be learning things about IC because that makes doctor visits go much better.

    Ollie.

    Leave a comment:


  • bri1121
    started a topic Symptoms

    Symptoms

    After the doctor did a pelvic exam and a clean catch urine sample I was in a lot of pain. It took a week to go back to my normal pain if you know what I mean. Anyone else experience this? This makes me terrified if he wants to look into my bladder anymore!!

    Also I have been having pain near my right ovary location. I have seen others mention similar pain. But wondering if this is another symptom. I also have pain that goes around the right side of my back and down my legs?

    Also some right flank pain? Could this be from IC too?! I am thinking my body is falling apart are could this all be related?

    One more question- I know the answer is probably no but IC could not been seen on a bladder ultrasound right? I had one done and all he said was that my bladder was not completely empty.

    I am so sick of going to the doctors and not getting any results!! I am happy my tests are coming back good but still!!!
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