Hello all...hoping you can help me!

[yoink1515]

Hello everyone!

I hope some of you might be able to give me some advice. Here's my story:

I'm a 31 year old male living in Los Angeles. In November of 2006, I started having pain in my lower back, along with radiating pain in my left leg followed by occasional pins-and-needles. I went to see a chiropractor (which didn't help) and then a medical doctor, who ordered that I get an MRI. The MRI showed that I had a herniated disk between the L4-L5 vertebrae. Okay, no problem...I went to go see an orthopedic surgeon (at this point, the pain was not so bad...very liveable).

The orthopedic surgeon sat me down and talked to me about my options. He said I could either have surgery (something called a micro-discectomy, where they remove the part of the disk that's bulging) or just try physical therapy and other "conservative, non-surgical treatments". Since I didn't want to have surgery at the time, I elected to try the "conservative" route. Physical therapy and whatnot.

Now...you're probably wondering...what on earth does this have to do with IC?

Okay...on March 27 of this year, I came home from work with the unbelievable urge to pee. BAM! Just out of nowhere, it happened. So I went to the bathroom. 30 seconds later, I felt like I had to pee again. So I went again. And again. And again. I must have gone 11 times in one hour. No pain, no burning, no discomfort, just an unbelievable urge to pee ALL THE TIME. My fiancee told me, "Oh, you probably have a UTI...go see a urologist tomorrow." So I made an appointment, went to the uro, and he did a quick urinalysis in his office. He came back to me and said, "Nope. No infection." I was stunned. If I don't have an infection, then WHY AM I PEEING EVERY 3 MINUTES? I told my uro "Hey, ya know I have a herniated disk in my back, could that be like...pushing on a nerve to my bladder or something?" My uro (unbelievably) just shrugged and said, "I dunno. Maybe. Here take some detrol." And then he sent me home. I was like "uh...that sucked."

The detrol did nothing. I felt the same insistant need to pee all the time, (and peeing didn't make it go away). I began to worry. What if my hernated disk was killing a nerve to my bladder? I went to go see my orthopedic surgeon ASAP and he said "Well...I suppose it's possible you could be compressing a nerve to your bladder. The only way we'll know is if you have the surgery." So, on April 2, I went under the knife. The surgeon cut out the "bulging" part of my "bulging disk". I woke up from the general anathesia that afternoon and guess what? Even through all the haze and drugs...I STILL HAD TO PEE. That night the urge continued and into the next day. My orthopedic surgeon said "well, when I was in your back it didn't look like there were that many nerves compressed back there....just your sciatic nerve" (which is now fine.) He said, "I doubt it's a neurological problem, but you never know". He said "we may need to get an MRI of your pelvis". He prescribed me some Pyridine to help dull the sensation of urgency (but that really hasn't helped). He also gave me a script for the anti-biotic "Bactrum" (but I've been taking that for 7 days straight and it hasn't helped either).

I went to go see my primary care physician after I got home from the hospital, and told him about my urinary urgency/frequency issue. He checked my prostate. He said "Nope, prostate feels fine." (He did the standard finger-up-the-rectum thing). Then he mentioned the words "Interstitial Cystitis". I had never heard of it before but I immediately googled it and found your website.

So now I'm wondering if I have IC? I know it rarely seems to affect young men but anything is possible. Also...I have *never* had any pain in my pelvis, and also there is no burning associated with peeing. Just an annoying, persistant, non-stop urge to pee. Regardless of how much water I'm drinking, or if my bladder is full...I have to pee.

So...my question for you experts out there...does this sound like IC? Or does this sound like something else? Are there infections of the bladder / urethra that don't show up during a typical Urinary Analysis? Can you have IC with just "unexplained urinary frequency?" Has anyone heard of anything like that?

I just so uncomfortable feeling like I have to pee all the time...plus not knowing what it is makes me nervous and fearful.

Sorry for the long read and thanks in advance!

[LeeAnn]

ic or ?

hi, i'm an occupational therapist who happens to have IC. the reason i tell you my profession is b/c as i was reading your story i did wonder if it was due to your back injury. when dealing with spinal cord injury patients, we know that injuries above L1 result in spasticity of the bladder and below the level of L1 results in flaccidity. Spastic = high-tone or tight. Flaccid = low-tone or weak. In patients with these types of injuries they are incontinent. The people with spastic bladder must be cathed or they would never pee and therefore burst. The people with flaccid bladders either wet their pants or are cathed in order to prevent that from happening. SO! The reason I think it could be a result of your back injury is because your bulging disc was at the level of T4 which is above L1. It could be that a compression or minor lesion (lesions are harder to see than compressions during surgery) could be causing these symptoms, because if your bladder is somewhat spastic it could be causing these sensations. So perhaps you did somehow sustain some damage to the nerves causing this. If this is the case it isn't permanent as nerves regenerate at the rate of 1mm/day. However, I have no idea how a doctor would treat your condition in the mean time.

WITH THAT SAID, if i haven't confused you too much, your symptoms do sound like possible IC. YES it is possible to "just" have the one issue of frequency. You say you have no pain, that you just have to pee every three minutes. Isn't this painful? Because otherwise you'd be okay holding it for longer than 3 minutes. But you're not okay holding it, which to me says that it *is* painful. I would certainly describe my constant need to pee and never feeling any relief as painful. I would also guess you're not getting a good night's sleep with this problem as well but correct me if I'm wrong.

And I have *heard* of certain forms of bacteria that don't show up in urine cultures but if you have already taken antibiotics that should have killed anything even if it didn't show up.

If I were you I'd get a second opinion on the possibility of a nerve injury causing your problems, but unfortunately it does sound like possible IC. The gold standard test is the cystoscopy with hydrodistention which means the uro goes up there with a scope and distends your bladder with water and stretches it to it's full capacity. Once it is stretched they can look at the walls of the bladder and look for signs of bleeding, ulcers, etc that are characteristics of IC probably 90% of the time.

For me, the symptoms you are describing were my first symptoms of IC. Just a constant urge. The burning and more widespread pelvic pain didn't come until later. Unfortunately I was 19 at the time and no one really took me seriously when I said I was peeing 60-80 times a day.

I wish you luck and let us know what happens.

[leelee88]

I know how you are feeling, because for months I had that same feeling and it was driving me insane..My GYN said it is probably nerve damage from ,my cysto/hydro, because I was not feeling this until after my surgery.She put me on Elavil and Cymbalta and now I only have that feeling every now and then..
As far as having IC and just having symtoms of frequency it is possible. IC affects all of us in so many differant ways..I wish I could help you more, maybe someone else will chime in with some helpful info

[ICNDonna]

I wish I had a real answer for you. It's possible that what you have is IC, but it's also possible that LeeAnn is correct and it's a leftover from your back problem and will resolve itself.

One thing you might try is to go to the Patient Handbook and find the IC diet. Putting yourself on an IC diet shouldn't do you any harm and if it is IC that you have, the diet may relieve your symptoms substantially. Even if you don't go on the diet 100%, I suggest eliminating such things as citrus fruits and juices, cranberries and cranberry juice, coffee, tea, and sodas for a while to see if that helps.

Donna

[born2swim]

Hey there,

I'm sorry to hear of all your trouble and doctor hopping. I have not been diagnosed yet... and without the burning pain most IC people have, my urologist and gyno are reluctant in diagnosing me with IC. I have a scope in 2 days. I too was put on Detrol, then Vesicare, then Ditropan. Ditropan sucks (gives me retention and dries me up everywhere... mouth, eyes, nose, vagina, etc). My gyno put me on pyridium and an antibiotic to try and calm things down (on a physical exam my urethra was extremely tender and shot pain across my pelvis). He also said do the IC diet to see if there are diet triggers for me (whether I'm allergic to something like an artificial sweetener or sensitive to the acidic compounds in juice and tea/coffee).

My point is, I am like you. I don't hurt when I urinate. It doesn't help to urinate. I have that constant feeling. The more I move, the worse I feel. My gyno is leaning more toward urethra syndrome or urithritis with unknown cause. The pyridium and antibiotic has seemed to help a tad (at night... I wake up 2-4 times in 6-7 hours... which is a ton better than every 30 minutes for 4 hours, when I'd give up and stay up).

Keep following up with your doctors. See a urologist and tell them the meds are not working. If they suspect IC, they need to scope you and/or do a hydrodistention. I'm going for my first scope after nearly 6 months of symptoms and doctors visits (and my gyno was shocked to hear of my symptoms and no scope being done yet). My urologist also wants to rule out stricture, polyp, and diverticula of the urethra. Scoping is a good test to have done. Ask about numbing gel (my uro uses it but not everyone in his office does). My uro is giving me pain meds to take before the procedure due to the amount of pain my urethra is in. I don't really hurt unless I strain (and when my period hits it is horrible). I feel a dull ache every day, but with my period/hormones it is excruciating. My chief complaint is the constant need to pee signal... and when I get there... drips. I stand up, need to sit back down. Sometimes I pee every 5 minutes. I actually had to miss a month of class due to this.

I hope this helped a bit. I have that constant need to pee, and it makes sleeping impossible sometimes. I am chronically sleep deprived because of it. I hope you feel better, and get a diagnosis, soon!

[jen74]

What LeAnn said makes sense. It could be nerves causing it. It also could be the start of IC. I am sorry you are dealing with this, and that feeling like you have to pee all the time sucks, I know.
I often wonder if my bladder pain could be from my bladder being compressed my something in my pelvic area, maybe endometriosis or something. Of course you dont need to worry about having endo since your a guy .
I do hope you get to feeling better real soon though.
Jen

[yoink1515]

Thank you!

Thank you everyone for the honest and thoughtful answers.

I called my uro today and told him the detrol wasn't working. He said to try 5mg's of Vesicare instead. He faxed me a script and I went to the pharmacy ASAP and filled it. Took 5 mg's and actually felt a little better today. I've been keeping a log of the number of times I pee each day. Today in a roughly 12 hour period, I pee'd 7 times. On paper that doesn't look too bad...but the URGE to pee was constant during those 12 hours. I don't know if I'm imagining it, but the Vesicare maybe made it feel a little better.

Now all of a sudden for some reason I'm feeling some burning after I pee. Not DURING the pee, but afterwards when I sit back down on the couch. Just started today. Could it be from something I ate? I had New York steak for dinner, a whole artichoke with some butter and mayonaisse, and a salad with cilantro dressing. And lots of water.

This sucks.

Also, does anyone know, is it safe to up my dose of Vesicare to 10 mg per day? I figure it's probably okay because I see that they make Vesicare 5 and 10 mg tablets.

I see my (very good) orthopedic surgeon tomorrow (Tuesday). I believe he said he wanted to order an MRI for me so I'll let you know how that turns out. Fun! I Get to go into a big tube with loud noises! Can't wait!

[Cardholic]

My symptoms seem to be all over the place too. I am not dx yet either. But one of my major complaints is pain AFTER I PEE. I get a shooting pain up through my vagina... I know you wouldn't have that, but it's AFTER I pee that I get the pain. And today, it's a constant urge to pee... I just went and the urge did not go away. Usually, I get a pain before, then after, but not the constant urge like today.

Good Luck with the MRI... I know all of this testing is a "Pain" I'm doing more testing next week and the week after (I also have microscopic blood in my urine, so they are at least taking me seriously)... hopefully I'll get answers soon.

I hope you feel better soon!

[beandip]

I think avocados are terrible, plus the vinegar in the salad dressing-- both bad for many of us with IC. Do take a look at the list. I had to get everything out of my diet and then start reintroducing one at a time to see which ones hurt my bladder.

I had the same sudden onset of symptoms and I was diagnosed with IC. Get to a doctor and get checked out. I do not like it that you are just being prescribed things without going in to see the doc. You really need a urologist who specializes in dealing with IC patients. I went to a regular Uro and got not help, only a prescription for detrol and a good luck with that. I ended up in the emergency room after I couldn't take the pressure that became pain after weeks of being only the pressure to pee. You need to really advocate for yourself and find a doctor who cares.

So many of us have been through this, we really feel for you!!!!!
Good luck in finding help! And welcome to the group. These people are awesome, knowledgeable, and instant friends who understand.

Colleen

[yoink1515]

An update

Hello again.

Thanks for all the advice so far.

Here's a quick update to my situation.

I feel like maybe the Vesicare my first uro prescribed is kinda working. The frequency problem is dulled a little. It's still there...but it's not driving me bat-sh*t crazy like before.

So I saw a second uro on Wednesday and he basically said the same thing as the first uro:

1) It's probably neurological in nature (due to my back).
2) Keep taking the Vesicare for another week or two
3) "Intersitial Cystitis? Are you nuts? No way. You don't have IC."

(Sigh)

I've compiled a list of reasons why my frequency problem could or could NOT be IC:

Things that make it seem like IC:

1) UA / UC tests for UTI are all negative.
2) Prostate is "fine" (confirmed by two uros)
3) Unexplained frequency with no burning sensation while peeing.
4) Has not let up for almost three weeks now.
5) If it were neurological in nature, I should be experiencing SO MANY more weird / screwy things in the lower half of my body at the same time...like numbness, loss of muscle control, inability to walk, major pee leakage, etc.
The likelihood of one single specific set of nerves being damaged that lead to the bladder (and ONLY those being damaged) is very low.


Things that make it seem that it's NOT IC:

1) Onset co-incided with increased symptoms of leg pain and tingling stemming from my compressed nerve in my back.
2) I'm a 31 year old man (statistically, I would be in the minority if I had IC)
3) I can sleep through the night. I know many IC'ers say they wake up 10-15 times a night to pee. Not me. When my head hits the pillow, and I manage to fall asleep, I can sleep 9 to 10 hours straight through no problem. Nuthin' wakes me up. Even weirder...right when I awake...I feel like all my symptoms are gone. I feel perfect. But then as I slowly wake up, the urgency/frequency thing creeps up on me and by the time I'm in the shower, I feel like I have to pee. Is that weird or what? Anyone experience anything like that?
4) The frequency seems to be constant regardless of what I eat or drink. Nothing seems to make it better or worse.


(sigh again)

So I found a set of two Uro's here in Los Angeles at UCLA that specialize in IC (they were listed here on the website). I'm thinking I should just leave my other two uro's behind and try these two UCLA docs.

I'm scared of the cyto / hydro that will have to be done. When I had my back surgery, they had to give me a foley cath while I was awake and it felt like they were feeding 80 yards of it into me. I consider myself a brave person but the insertion made me wanna cry. I'm sure the cyto / hydro will be the same.

Also, I just ordered some blueberry leaf tea online. I read here on the forums that it helps.

I also have an MRI on my pelvis slated on the 17th. I'm sure it won't tell me if I have IC, but it will at least tell me that there's not some other weird thing going on down there that's the cause of this frequency.

Thoughts?

[jenleigh]

IC and back

You may have IC. The first time I ever had problems with IC, I had overactive bladder suddenly. I happened more after I swept or mopped. (I was a maid). I have compressed L-5 and L-6 discs. They said that prob did'n affect my bladder that way. After years of this I was finally diag with IC. The IC started out as only overactive bladder with retention then became years later more of the pain and burning. Even tho almost after every time I mopped and swept my bladder was overactive, they still said it had nothing to do with my back! I don't beleive them. But I do believe I prob have IC and I did not know that it can start out and change. I have heard people can have bacteria you can't see on most urine cultures, that some people claim can cause IC. I hope you find out what is the cause. Let me know!

[jen74]

Just because you dont have to get up at night to pee does not rule out IC. There are times when I only get up once a night, but my frequency is in the daytime usually, I and I have more pain than anything.
Also, you do not have to do a hydro if you do not want to. I refused to do this as I am real big into research as is my whole family and we all researched it and came back with the same opinion, so I decided not to do it. Your doctor can just treat you for IC, as that is what they would do anyhow.
How awful that they did not put the cath in you when you had your back surgery while you were under sedation. Why would they do it when were awake. Geez, I just dont get these doctors.
I am sorry you are going through all this. I hope you get some answers and feel better soon.
Jen

[mary124]

You can possibly have both IC/Overactive bladder problems--that is what my primary care doctor told me. Both my Uro and Uro/gyno couldn't figure out what was going on with me even after running test and putting me on different medications which didn't help! One day I was out my regular doctor and he asked me how I was doing with my IC and I just told him what was going on and he told me this so he put me on Vesicare and boy, within a few days, I was 75% better, before at night I was getting up 6-7 times now its anywhere between 1-2 times! What a difference. I have now been on it for a month. I would give it another few weeks if I were you. As to upping your prescription from 5 to 10 mg, I wouldn't do that till I talk to the doctor.