Scope... and still no Dx

[born2swim]

A few people have told me the same thing... but what I don't understand about my scope is why my urethra was so painful, but not the bladder? I mean, having that numbing gel sit there for 10 minutes killed me! I thought I was going to hurl by the end of the scope. I know that urethra pain can happen with IC... but those people have told me that they burn, have blood, etc. I don't burn and don't have blood... it's just physical (pelvic exam, scope, hard exercise, etc). My frequency/urgency shoots through the roof the more I move, which they say is due to my urethra, which is why the OAB meds didn't help. I feel like they are going in circles, but nothing is helping or ID'ing the problem! Maybe I'm in denial about IC because my symptoms seem to be mild in terms of pain on a daily basis, but the frequency is 100% IC (30-40 times a day with straining, nighttime frequency).

I will seek out an IC specialist (with my internist and gyno's help/recommendation). If the IC specialist wants to do a hydro, I'll give it a whirl! I'm ready for something to help. I've been on Elmiron for 4 days now. I was told to see an improvement in 1-3 months (if it works). I gave Ditropan 2 months with bad side effects, so I can wait this long.

I really do appreciate your reply to my post. It helps to know that others have had normal scopes, but a dx with hydro. My uro seems to avoid anything under anesthesia until necessary. He said do Elmiron for 4 months then return and we'll talk about hydro... but he said that seeing an IC specialist would be a wise move as IC isn't his speciality and he only has a few patients with that.

Again, thank you so much for taking the time and willingness to share with me your story. It helps a lot!

[born2swim]

geel, I don't think I could last must longer like this! My periods definately kill me (I went to the ER twice since 2007 started). So, hoping that the continuous pills stop that pain, I can handle dull pelvic ache (but I'm also single and the thought I having sex is the last thing on my mind after that last pelvic exam!)

It's strange that yours was everything but the bladder until the end! It's good for me to hear... because my dx is leaning more toward IC and I feel like I'm developing some denial. It's been 6 months like this now and I guess I'm just getting worn out with it all.

Have you noticed if foods bother your other problems? I don't really notice a diet impact when I eliminated everything, but I have avoided the big guns still just out of fear (artificial sweeteners/coffee/tea/caffeine/chocolate/citrus/acidic). I miss my decaf green tea!

Well, again, thanks!

[Tip and IBS]

Born2swin,there is a lot of organs in the way of the urethra.TALK ABOUT CONFUSION!

My pain and perhaps yours is especially THE enegmatic area where your muscle retain the urin.AGAIN,it propose pelvic floor dysfunction BUT we know that it's NOT a muscle pain rigth?

Something is too TIGTH somewhere down there.I have been diagnose with non-relaxing puborectalis but it dosen't bring me anywhere for my pubic pain.

[born2swim]

This is so frustrating! There are so many things that can affect the thin little urethra...

Well, I started to retain due to the Ditrpoan and now that it stopped, I'm not reataining as much, but I just have that unyielding feeling to pee. It's frustrating. I was hoping the OAB meds would help (nope). I was hoping the new birth control would help (nope). I was hoping the antibiotics/pyridium would help (nope). Even the Valium they gave me for the last horrible period didn't help (I thought it would knock me out enough to sleep though the night... no such luck).

It's like my urethra has a hiccup and won't stop signaling to my brain it needs to pee. When I say constant, I never have had a moment that I didn't need to pee since November. I don't go, then 10 minutes later have to go, then 10 minutes later, etc. I go, still feel like I have to (but am empty), strain (empty), then give up and get up still feeling like I have to pee. I have stopped straining for the most part (I thought maybe that was making it worse), but that hasn't helped/hurt anything. But what really throws my doctors is the fact that on my pelvic exam, only the urethra hurt and with the cystoscope, my urethra hurt with the numbing gel (which is by far not typical). And to make them more confused... no burning at all (never had except for the day and day after the scope).

Hopefully my internist will have some ideas... or my gynos... or someone... an IC specialist...?

[Tip and IBS]

I don't pee THAT often.I have irritable bladder/bowel and PFD.

Main symptoms:intestinal

However,i have permanent pubic burning which need to be "fix" before the heat of summer arrive which mean more burning .

[geel]

For me, it was weird how it all worked out. I thought I'd end up with a hysterectomy (sp) or something worse and it was my bladder all along. Periods are really hard to deal with. Try a heating pad it can be a comfort. Click my screen name to see my posts, my very 1st one goes into how I thought this was all female stuff.


I am very guilty of not following the diet right now. My urge and pain are not bad so as of right now so I limit only teas, caffeine, anything carbonated but as far as foods go I've only cut out tomatoes(except on pizza night) and citrus. My last "flair" was in January and only lasted a couple days. But the off and on pains,here,there and everywhere "down there" I've just leaned to live with.

This site is a wonderful place to come and unload anytime!!! All these wonderful women have lots of good advice and words of encouragement. And their smart too! I don't post often but visit quite often for the morale support!!!


Hang in there!
Ellen

[lan]

Born2swim - so sorry to hear that you still have that "gotta go" feeling constantly. In January and February, I would have that feeling for several days in a row and it was unbearable. So I am sorry that you have been feeling that way for so long. I started taking 25 mg of Elavil in March and since then I can sometimes go for 1 or 2 hours without feeling like I need to go. I still have the stinging feeling (in my urethra) constantly - and the stinging is anoying - but not nearly as unbearable as the "gotta go" feeling. The IC specialist that I saw in March wants me to increase the Elavil to 50mg. I have been putting this off - hoping that the 25 mg would be enough. But I think I will try the 50mg soon to see if I can feel any better. It would be so nice to be completely pain free for a few minutes I remember when the "gotta go" feeling was driving me crazy and I tearfully said to my husband "What am I going to do if I have to live like this forever?" and he said "They will find something that will make you feel better". I am keeping you in my thoughts and hoping that you will be feeling better soon. Sending healing energy...lan

[jen74]

Sorry you are feeling so bad. I just got my period Saturday, and I am in much worse pain as well. I know what you mean about that "gotta go all the time feeling". It sucks.
I was diagnosed with a regular cystoscopy. I would not do the hydrodistetion after I researched it. And yes, a hydro can make the bladder bleed,( and yes, even a normal healthy bladder). My gyne told me about studies they did while doing the hydro on people with IC and people without. She said that some of the people who did not have IC showed pin point bleeding after the hydro. It would make sense that it would cause bleeding. I mean having the bladder stretched beyond it's capacity is not in any way normal at all for any bladder.
Some people get relief since it messes with the nerves. But you have just as much chance to feel worse as it can go the other way and irritate already messed up nerves. My doctor told me that what happens or what the uro's claim happens is that when they over stretch the bladder, the nerves get desensitized and hence you should feel less pain. But what they dont tell you is, when all those nerves start to regenerate, the pain can come back much worse in some people. Or if you are a person who has alot of nerve pain or neuropathic pain, then having a hydro or messing with those nerves can cause them to even be more hypersensitive to pain.
I was reading Dr. Moldwins book, and even in the book he said that hydro's are being less and less used as a means of diagnosis and treatment these days, or it is being used more so as a last resort.
I hope and pray they come up with some cure for this awful disease soon. It is just so hard to live with. I feel for all of us. Big Hugs.
Jen

[born2swim]

Yeah, that "gotta go" feeling is the pitts. I'm miserible every day, but not due to pain... due to that. When my period hits, then I'm in agony with pain. Hopefully I won't have one of those for a while...

I know people use Elavil... I would not like to be put on an anti-depressant unless I really must... so we'll see how Elmiron works with me! So far and no balding and no GI upset (after I opened the capsules instead of taking them whole).

Boy, I sure hope you are pain free soon. I don't have pain like that... just during my periods... so at least I don't have that and the unyielding need to pee too.

I have been quite tearful with this horrible feeling... and I sure hope they find something that helps soon! Thank you for the healing thoughts! I got some great news today (not related to my health) and I'm thrilled... so if my body could cooperate I'd be uncontrollably giddy!

Thanks again!

[born2swim]

Ug... I hope you can get past you period soon. They have me on a continuous pill and after a month long period, hopefully I have shed all the lining I need to for a very long time!

That is EXACTLY how I feel about hydro... how normal bladders are misdiagnosed with IC due to some bleeding with stretching it too far. My uro said he doesn't stretch it as far as some others (he lets gravity pull the saline into the bladder and let it fill to capacity and sit there... it might be slightly stretched, but not overly stretched). At least his method sounded more reasonable to me...

I just don't really trust it as a diagnosis (I know some people will tell me I'm in denial...), but I need something to help me feel better!

I kind of feel that IC is secondary to something else (autoimmune, allergy, infections causing a lining problem, etc). I just can't believe something like this keeps going on and they can't figure out how to treat it better. It's one thing to cure it, but why can't they find better treatments? It's amazing and very sad. I hope they make progress soon. More doctors have to accept that IC is a real condition, not a 'catch-all' for unexplained pelvic pain... and it certainly is not mental!

[lonen86]

Get a second opinion

Hi I went thru the same problem the first time , he said that "you don't have IC your bladeer looks healthy .
I have so much pain and i just couldn't understand .
Im getting a second opinion but if they come up with the same answer I will travel to see a Dr who specialices in IC .Good luck LOREN.

[mom_in_ma]

Hmmm...sound so much like when I was first diagnosed. I had a horrible, constant urge to pee and pain. The first two uros I saw did an in-office scope and pronounced my bladder to be 'healthy.' Both said, 'I don't know what's wrong.'

However, I moved to MA, found a couple of really good uros and was diagnosed by symptoms alone. I won't do a hydro because I don't want to risk feeling more pain and also it's no longer the 'gold standard' that they used to claim it was. More and more doctors are going by the potassium test or the puff questionaire.

[jen74]

Wow. My IC was diagnosed just by cystsocopy. I was sedated during the cystoscopy though as I had one once awake and it was just to painful.
Since my IC was found during a regular cystoscopy, does this mean I likely have a severe case? I know that alot of people here say they have to do the hydro to even see the IC.
Maybe the urogyne at the time was able to fill my bladder with a little more water during the cystoscopy( as they do put some water in during regular cystoscopies I believe anyways), and maybe he got a better look, I dont know. I just know he said I had IC after doing just a cystoscopy. I dont even want to imagine what could have happened if I had done a hydro, what my poor baldder would have looked like after that if I had done it.
Has anyone else been diganosed with IC through a regular cystoscopy?
He even took pictures, and I have them. It looks like my bladder is full of veins and is very inflammed in some areas. Is this what the IC bladder looks like? What does the normal baldder look like?
Jen

[lan]

Jen - I had an in-office cystoscopy. My uro said that he could see mild inflamation near my urethra. He let my husband look through the scope - but my husband didn't really know what he was looking at. Unfortunately he did not take any pictures. He was treating me for a UTI but he did the scope because I had blood in my urine at the onset of the UTI and he wanted to rule out cancer. He gave me antibiotics hoping that the inflamation would clear but my symptoms never improved (and I never had bacteria in my urine). So I was diagnosed with IC because all the tests that I had ruled out other causes for my discomfort.

[mayray]

elavil

Remember tho that elavil is old anti depressant and does not have side effects of the newer SSRis. It was the only thing that worked for me and in larger doses it did have the side effect of being tired all the time but I stuck with it, am now down to 5 mg and have been in remission for 7 years.