Scope... and still no Dx

[born2swim]

Well, I had a cystoscope done in the office today... I e-mailed LuAnne about my scope, so I figured I'd share my experience with you guys too:

My scope... well they used a numbing gel before on the opening and then up the entire urethra. That hurt like a ****! It felt like a needle was being inserted. Then they had to let the numbing gel sit there for 10-15 minutes. The full urethra made my pelvis hurt so bad, like some organ exploded, and I started to get nautious. I tried to breathe through it. Then the urologist came in and he was trying to be so gentle and careful and I swear that scope hurt more than expected. I had tears streaming down my face into my hair. It killed me. He told me that not every urologist numbs the entire urethra for women because they handle foleys ok (obviously not me!). So he is an angel and numbs everything. He got to the bladder, and saw a perfectly healthy bladder. He said that there are small signs of IC (or otherwise it is obvious) with a cystoscope and I had none of them. He filled my bladder, but already needing to pee, the pelvic pain, the pressure... he couldn't fill it up very much. Every time he moved the scope, it felt like someone was scratching my urethra, even with it being "numbed".

So, he wants me to stop the Ditropan (which didn't help but give me retention and dried up everything), finish up the Pyridium/antibiotic my gyno prescribed, and start taking Elmiron. He said that it will help protect the lining of the bladder, but also the urethra lining. My urethra really seems to be the cause of trouble, but nothing looked abnormal. The Elmiron could take 1-3 months to help (if it does). He didn't want to do a hydrodistention. He said why subject me to anesthesia when it most likely won't help. He really doesn't feel like I have IC, but still wants me to try Elmiron to see if it helps my urethra. I will go back to my gyno in 2-3 weeks to talk about things. Hopefully this birth control stopped my periods because I can't handle another at this point.

So... I'm now taking Elmiron, Pyridium, Macrobid, Seasonique (BCP), and my allergy meds. I hope something starts to work. I will see my internist next week (and her biggest concerns were endometriosis or pelvic adhesions).

So... no diagnosis... extremely painful test... a med I don't want to take (but I'm willing to try anything at this point). I'll let you know how that goes, but most likely I won't know anything for at least a month. Maybe my internist and gyno will think of different things/tests... but we'll see. It doesn't look like IC, which I didnt' really want them to find it, but I also wanted them to find the problem so we can fix it.

I wish I had better news, but at least they didn't find anything seriously/dangerously wrong (but the uro wasn't expecting to find anything like tumors or polyps). He said that getting a second opinion wouldn't hurt, but nobody would do a hydrodistention with a scope that normal. He didn't like how painful the urethra was and that I did good (was tough) for the scope. He was really surprised to see tears streaming from the urethra pain, but the bladder, just pressure and that need to pee. So no IC? I'll see my internist and gyno next... maybe someone will help me someday

[Sarojini]

I'm sorry you hurt so much Get some rest and recover from the rough day!

Please know that it is very, very common for an IC bladder to look completely normal on an in-office scope -- this is not diagnostic for IC. The cysto/hydro is generally thought of as the gold standard, since the signs of IC appear only after distention, but many in the field are either using the potassium sensitivity test or the PUF (pain-urgency-frequency) questionnaire, which provides a preliminary diagnosis based on symptoms -- or a combination of both.

Also be aware that there are many ICers who have symptoms that seem more urethral than "bladder."

A second opinion may be the way to go.

[born2swim]

Thank you for your response. I might look into another uro... see who in town knows anything about IC. I'll talk with my gyno in a couple of weeks (and my internist next week) and see what/who is recommended. My uro admitted he isn't an IC expert, but my bladder shows no sign of it (from those IC bladders he has seen).

I don't hurt as much as earlier, but it still burns to pee. Boy I hated that scope! It hurt more than I thought it would! I don't understand how IC can cause urethra pain and not bladder pain though...

[shvlnose]

It could still be....

As the previous person said, an in offic cysto frequently will show a normal bladder, even if you do have IC. If he saw "mild signs" of it in the office... I would be really suspicious as to what the severity would look like with a hydro.

As an example, I had an in office cysto in October of 2004 shortly after my pain started; they said that everything looked normal and fine. They didn't think I had IC. My pain continued.

In April of 2005 I has a potassium sensitivity test and flared for 4 days after. This was used as my dx of probable IC and I was given Elmiron, Neurontin and a few other meds. The cocktail did eventually help, but it took a few months and a using a pain journal to be able to notice.

In April of 2006 I got a new uro who wanted to make "sure" that I had IC (I was requesting intruction in home instillations). He did a cysto w/ hydrodistention under anesthesia and confirmed that my bladder looked like a case of "classic IC."

I am so sorry you are going through this. Hang in there and try not to give up hope!

Alyson

[born2swim]

Well, the uro said I had no signs of IC, none whatsoever. He did say it wouldn't hurt getting a second opinion with an IC specialist. He doesn't feel that I have it though, based on all his IC patients, even ones that he dx'd with hydro and couldn't see much with a plain cysto (but he always saw something minute with cysto to warrant a hydro). He wanted to put me on Elmiron to cover it, especially with urethra pain. He said that my symptoms are atypical though.

I don't know...

I'll see what my internist thinks and then see my gyno again. Maybe they know who is good with IC in town? I read all the symptoms and sensitivities on this forum, but I don't think that is me. Maybe it is denial, maybe it is just mild, or maybe it isn't IC. I really don't know, but I know that I'm tired of not sleeping, of peeing so much... and if my period comes again... I think I'll die from the pain.

[lan]

the pain is real

I have read (several places) that IC is a diagnosis of exclusion and that if they can not find another cause for your pain then you should be treated for IC.

[jen74]

I am sorry you had all that pain. I had the same experience. I will NEVER do another cystoscopy awake if I dont have to. It was like you said, it felt like the doc was shoving a needle in my urethra. I have a very high tolerance for pain and have went through some very painful things in my life( exploded ectopic pregnancy) and this was waaaaay worse pain.
Next time, if you ever have to have anothe one, insist that you are sedated. They sedate people when they do endoscopies all the time, this is also a scope, and therefore should require sedation as well, or at least it should be offered. The last cystoscopy I had which dx the IC, I told the doctor my experience with the first one and all the pain I had with it and that I ould not do it again awake. He told me he never does them on anyone awake as it would be way to painful for a person with possible IC.
Next time, insist on being sedated. Hope you feel better soon.
Jen

[born2swim]

I have read that too... but since they still have a few (very few) cards up their sleeves, they can't say I have IC. My uro is treating me with Elmiron and stopped the OAB meds as they didn't help and the side effects SUCKED!

I still have to see my internist (who worried about pelvic adhesions or endometriosis) and go back to my gyno (who has to consider endometriosis still...). I will ask him for a referral to an IC specialist in town. I hear horror stories about hydrodistention, but I will go through it, if it may help and dx me... scared about that though.

[Krisi]

When I had my cysto it was after I had my CT/x-rays etc to rule out cancer stone etc because I had hematuria. He did a regular cysto on me which is not standard in looking for people with IC. It only took him about 30 seconds to realize there was something wrong. This was without hydro. He pulled the cysto out and said your bladder is missing some of its lining. I later found out that is was i think on the trigone (trigonitis) where it was missing a portion, if not in other areas. He didn't want to put me through the cysto/hydro even under anesthesia or even the potassium test. I was first put on low dose antibiotics .... then later put on elmiron when he labelled it IC. This was in early '04.

I don't know how you did after the cysto but that was the worst for me because I bled and it hurt so bad I was in tears just trying to pee. I don't know why but the cysto irritated the urethra wall so bad even I drop of urine would kill. I have had this one other time when I was cath'd to get instill'd. I had several instills after and never had the problem i didn't with the cysto and that one cath. I feel for you it is hard when they don't know what is wrong with you. I'll send some prayers your way.

Krisi

[born2swim]

I was so afraid to get this scope done (2 months ago) and when my uro brought it up, I asked about sedation (due to fear of the pain). He said that he wouldn't sedate me (nobody sedates for a plain in-office scope, and that he would put me on Elmiron blindly before sedating me... he seems afraid of anesthesia and such). So... now I know... I will never do that again! He gave me Lortab to take before the procedure to be a prophylactic pain killer... but that didn't do anything! He said that not all urologists even numb for women (because they can handle foleys). I would have passed out in pain if he didn't. I almost died from the pain of just having the numbing gel in my urethra. Why does my urethra hurt so much! Whenever I move, it screams that I have to pee... constantly!

When I see my gyno again... I'll ask for a referral to an IC specialist. My uro said he's not an expert with IC, but he's diagnosed it many times. He didn't see any sign on my scope. I'll talk with someone else (and he even recommended it). I like this uro, but I do want to see someone that deals with it all the time.

[born2swim]

Well, I never had blood, pus, bacteria, etc in my urine. I had some pelvic pain (but was bad when I was active), and I'd get these painful attacks with my period. The frequency 30-40 times a day and increases with activity was more indicative of IC than OAB, especially with lots of nighttime urination. They treated me with OAB meds and that didn't do anything. The scope was put off due to it being invasive (and yes, there was a ton of burning for a couple of days after, but no where near the pain of the cysto). I didn't expect to have tears running down my face (especially since the Ditropan dried up everything). My uro said there was some minor inflammation in the trigone area, but he said that nearly every bladder has inflammation there and that it is so unimportant that he didn't even need to mention it. There was no lining problems, no vessel abnormalities, no glomerulations... no sign of IC... but he said with the symptoms and level of pain with my urethra, Elmiron might help and it wouldn't hurt seeing an IC specialist. So... who knows what is wrong with me.

Thanks for the prayers! I'm really frustrated...

[ICNDonna]

When I had my first cystoscopy (in my uro's office) my bladder appeared to be completely normal and healthy. After other tests were completed and no cause found for my pain and frequency, I had a hydrodistention and biopsies done and I was diagnosed with severe IC with tiny ulcers. The great thing was that the hydro helped my symptoms for many months.

Donna

[born2swim]

So your first scope was normal, yet you have severe IC? How do they not see it on the scope but they can with other tests? Which test would be best to ask for? I have reservations about hydrodistention. To me... if you stretch out an organ (healthy or not), wouldn't you see pin point bleeding if you stretch it out past capacity, healthy or not? Maybe I'm in denial or something...

On my scope, the uro said that I had a small amount of inflammation in the trigone area, but that is a common finding on any bladder and he wasn't worried about it at all (he said it was not even worth mentioning because it was so unimportant).

Well, I will still talk with my gyno and see about finding an IC expert in town.

Thanks for your help!

[geel]

Hi haven't posted here lately but wanted to add my two cents. Diag. Feb 2007. I had a office scope too and bladder appeared normal. They sent me on my merry way. But two months later when my bladder went crazy( pain and urge). I went back to Ob/gyn then to uro and they did a combo lap/ d&c ( pelvic pain) and hydro and that's when the docs saw it. And this is why. An in office scope looks at the bladder and yes they run solution up in there to clear it out for a good look but I am pretty sure that's it. But hydrodistention fills an IC bladder to the point that it bleeds. (over fills the bladder really, actually stretching it. That's why so many feel relief after the procedure. Unless they fill the bladder just like your own body naturally fills your bladder they (uro) can't really see how it reacts. Also IC bladders for the most part and someone can correct me if I am wrong here are smaller than a normal bladder and that smallness can only be detected by measuring the fluid used in the hydrodistention. That's my uneducated guess about the difference . So sorry your procedure was so painful!! Mine wasn't bad I just dreaded peeing for the next day and a half, that was the worst!!! Good Luck to you!!!
Ellen
Diag IC 2/07
Meds: Elmiron 100mg 3x day
Anxiety since 2001
Meds: sometimes nothing, right now xanax
TMJ(jaw joint trouble)
Meds: no present treatment

[geel]

Agree whole heartedly here!

Also be aware that there are many ICers who have symptoms that seem more urethral than "bladder."

A second opinion may be the way to go.

Mine were urethral,vaginal,rectal, pelvic, my bladder was "the last thing to go"!


Good luck again. Don't give up!!! It took nine months to get to my diagnosis! For many it takes even longer!!