I just plain need some advice/help

[JBB]

Sorry for the length of this. I'm trying to include as much info as possible hoping that someone my be able to help.

It has been awhile since I have posted primarily because I felt that I was doing fairly good. I am a 40 year old male and I'm really not sure what is wrong with me. I've struggled with what was diagnosed as bacterial prostatitis, chronic non-bacterial prostatitis, prostadynia, I've seen a IC expert who believes it is IC and at times my normal urologist has thought it is IC but he seems to go back and forth between a prostate condition and IC.

At any rate about 2 years ago I decided to just treat it like IC as I didn't want to have a hydrodistension done. I went on a strict IC diet and began taking Cystoprotec I can't take it everyday (due to GI upset) but probably take it every other day. At any rate, it seemed to help. I would go through periods of a couple of normal weeks and then a couple of bad days etc. On a bad day I feel like I don't empty my bladder when I urinate. My lower abdominal area feels like it has a lot of pressure on it. I usually assume because my bladder isn't empty and at times I'm sure it doesn't empty but almost everytime I have a scan in the DRs office it is empty but I usually feel like I'm empty at those times. I also usually sleep through the night without needing to get up.

I recently have had several weeks of mostly bad days. I haven't changed my diet and have been taking more cystoprotek but it is not helping. I occasionally add arginine which seems to help but it gives me headaches if I take it regularly.

My Symptoms: Not what you would normally expect with IC. I only urinate about 3 times a day, but I feel like I don't empty my bladder and have significant pressure in my lower abdominal area. I usually measure the amount of water I drink and I sit at a desk all day (so no sweating). Some days my volume of urine is good and I can tell all is well but on bad days the volume seems much lower and the flow is not as good or lengthy and on those days I have the pressure/pain in the lower abdominal area. I typically have bladder spasms during these bad times as well. I use a heating pad frequently. It hurts me to work at my desk due to the pressure and have to lean back in my chair most of the time. I have had a somewhat extended belly for some time and had to go up a couple of pants sizes a couple of years ago due to the pressure feeling. On good days the bloated belly goes down a significant amount and my pants fit much looser. I also have significant inguinial canal discomfort. Many times I feel like I have a hernia on both sides. On one side, I even have a very soft area about 2 inches wide and 2 inches long that seems to protrude in my lower abdominal area and doesn't feel like there is a muscle wall under it compared to the other side. I've had it checked by several dr's and none of them think it is a hernia but all them notice what I'm talking about. I even had a CT scan which didn't show anything. It is usually that side of my lower abdominal area that has the most discomfort but recently the other side has started to hurt as well and I'm in a panic that whatever I have is getting worse. On bad days rather than getting the feeling that my bladder is overactive I panic more that it has stopped working and I will have to use a catheter the rest of my life. I feel like my bladder is so full at times that it is going to pop through my abdominal wall.

I'm scheduled for another CT Scan on Thursday as my urologist wanted to get a new look at my pelvic area due to the increased pain (by the way I had testicular cancer in 2001 treated with radiation) and probably the history of cancer. I would almost prefer it was cancer at least I know the cancer may go away. I know however that is not what is going on. I have some sort of bladder condition.

Does this sound like IC? If not any other ideas? What should be the next treatment options I should think about? I figure it is Elmiron or Instillations but I'm worried about the GI problems with the Elmiron and a catheter with the instillations. I've also been reluctant to have a cystoscope due really to fear. Is there anything I could try to get through this period of flare, if that is what it is.

[maryla]

JBB,

I think, I would at least have the hydro and the cysto, to see if indeed you do have IC. Which sometimes it doesn't show that way either, But maybe at least it will tell something and give you some much needed relief. It really isn't that bad. My uro performs them under aneshesia(sp). Also, the first time that I went to my reg uro that I see now about 3 years ago, (he's actually my 3rd uro) he said my urethrea was very small so he dialated it as well while under. Which has helped with the retention and he continues to dialate it monthly when I get my instills from him. I have had about 6-7 hydro's and cysto's in the last 4 yrs and most of the time, I do get relief for a while.

I hope you get some relief soon!

God Bless

[branmun]

before I had PT I felt like my bladder never was empty but scans showed that it was and also I had a very weak flow-PT is the only thing that helped me lose the false urge to urinate and restore my normal flow-hope that helps & that you find something that works for you!

[SharonA]

I honestly don't know what to tell you. The only thing I can think of is to have the cystoscopy/hydrodistention under anesthesia so the urologist can take a look inside your bladder. Or you could have the PST (Potassium sensitivity Test) done to see if you react to the potassium.

Whatever you decide to do, I hope you get some answers soon. It sounds like you are really having a rough time of it. I hope you are able to get some answers from a doctor and some relief from your symptoms.

[leelee88]

I truly hate that you continue to suffer. Have you did nay research on PFD Pelvic Floor Dysfuntion? You have alot of symptoms of PFD.. And if frequency is not and issue I would cerntainly look it to this. Just google it and you will find alot of info on it. I am pretty sure men could get this also. And there are treatments for this. You would have to go to a PT but it is well worth it..

[Cadyfatcat]

I would definitely make sure you don't have any tumors before you do anything else. If you don't, I have some advice...

I am a male and I have similar abdominal distension problems; I associate them with my pelvic floor dysfunction(PFD). In fact, when the PFD gets worse, so does the bloating or distension of the abdomen.

I recommend seeing a physical therapist. There are many muscles that cross through your inguinal area on the inside of your leg that can pinch nerves, such as the adductors and the pectinus muscle. For now you could try doing some stretches for these muscles. Just google adductor stretch.

Nobody has given me an adequate answer about the abdominal distension thing either...but my theory is this: Because of the constant urge to urinate, The pelvic floor muscles have developed enough tension and become enough of a constant feeling in your body that upon every movement they tense up. When you get up from a chair, they tense up, when you kneel down, they tense up, when you press the brakes in your car, they tense up, etc. There is a different muscle in your body that is supposed to have this function - The transverse abdominus, which is precisely the muscle that when weak and un-toned will cause abdominal distension. So in order to remedy this muscular dysfunction you must stretch the pelvic floor and strengthen the trans abs.

If you find you have to strain more than you used to when defecating this may be a sign of pelvic floor dysfunction. You can also test for this tensing up phenomena by kneeling down like a catcher, then just feeling with your fingers the muscles right around your anus, and try to relax them as much as possible, then get up, if your muscles tighten up when you rise, you are probably experiencing this tensing of the pelvic floor, in which case your TA may be weak, and a weak TA also leads to a weak rectus abdominus, which tends to elongate and further distend the abdomen when weak.

[JBB]

Thank you all for your responses. I just had my follow up appt. with my urologist following my CT Scan last week. This time for my CT Scan (3rd one in 3 years) I decided not to empty my bladder during the scan and I bared down during the exam. It was these two events that led to the Radiologist finally discovering that I have a bladder hernia. My urologist said he has never seen one in a male especially in the area of the abdomen that I have mine. I now need to go to a surgeon to determine the next course of action.

The urologist was non-committal on whether this could have caused all the bladder difficulties I have had for about 2 1/2 - 3 years now. I remember the first time I thought I had a hernia and it definately preceeded all of my bladder problems. I just don't know if the hernia is irritating my bladder or even piniching it off in some way and that is causing my bladder to not function correctly at times or if my bladder not emptying caused the hernia to form. I don't know.

Any one have any knowledge or experience with bladder hernias?

[mlzippy7]

Sorry I do not have experience with bladder hernias but I just wanted to say I am glad they finally found out what the issue was. I know how frustrating it is to have test after test and never find out what is causing your pain.
Good luck with this!:angel:

[snowgirl]

Thank you all for your responses. I just had my follow up appt. with my urologist following my CT Scan last week. This time for my CT Scan (3rd one in 3 years) I decided not to empty my bladder during the scan and I bared down during the exam. It was these two events that led to the Radiologist finally discovering that I have a bladder hernia. My urologist said he has never seen one in a male especially in the area of the abdomen that I have mine. I now need to go to a surgeon to determine the next course of action.

The urologist was non-committal on whether this could have caused all the bladder difficulties I have had for about 2 1/2 - 3 years now. I remember the first time I thought I had a hernia and it definately preceeded all of my bladder problems. I just don't know if the hernia is irritating my bladder or even piniching it off in some way and that is causing my bladder to not function correctly at times or if my bladder not emptying caused the hernia to form. I don't know.

Any one have any knowledge or experience with bladder hernias?

no and I was a recovery room RN for 20 years. Take your time do your homework in picking a surgeon - second opinions are good as well. I would think do you need a general surgeon or a urologist that the million dollar question. They won't know the affect on your bladder until they get in to explore. Have you had an MRI? A good discussion to have with your family MD to help show you the way. VIcky