New to site - couple questions

[Jssugh]

33 y/o male. Starting having problems with urination in October of 2007. Pain increased for about 3 months and has been on the same level of pain every single day to the present. Initial doctor diagnosed me with cystitis glandularis and performed 3 surgies where they scoped the base of my bladder. Those surgies didn't help at all!!. My current urologist has diagnosed me with IC. I've tried several treatments but as of yet nothing has worked. Lyrica did work for a couple days but the side effects were too much.

Phyical Symptoms: painful urinination every time, unbearable pain when ejaculating, about 7 out of ten times I have a bowl movement cause of the spasms, frequency. Prostate enlargement and prostate pain.

Have any of the men found anything that helps the reduction of prostate size?
Have any men had severe pain ejaculating and if so anything help?

Just out of curosity did any guys start having significant hair loss once your IC symptoms started?? Excluding the use of elmiron. Mine began falling out the same week my symptoms started.

Thanks

[Engtch29]

IC problems

Have you been tested for infections?

[ICNDonna]

to the IC Network.

You didn't mention diet so I will ask if you are following an IC diet. You'll find the link to the latest food list in my signature below. And there are many treatment options available for ICers --- it can take a while to find which work best for any individual, but most of us do get there.

Sending warm healing thoughts,
Donna

[Jssugh]

Testing for infections.

In the past doctors have put me on a variety of antibiotics for varies lengths of time. But none of them have ever said that I have a certain type of infection mostly just the guessing game with the medications.

[bobspez]

33 y/o male. ...

Phyical Symptoms: painful urinination every time, unbearable pain when ejaculating, about 7 out of ten times I have a bowl movement cause of the spasms, frequency. Prostate enlargement and prostate pain.

Have any of the men found anything that helps the reduction of prostate size?

Thanks

My problem initially was an enlarged prostate. Nothing worked (herbal, over the counter, flax, pumpkin seed, flomax, etc.). My uro said I was a candidate for the low energy microwave procedure (TUMT), which was done without anesthetic in about an hour in his office. Needed to wear a foley catheter for three weeks after. That got rid of the intense burning and dribbling (and a trip to the ER for full retention, after which I learned to catherize myself). The TUMT generally has the least incidents of side effects so that's why I chose it. I still had to get up several times a night, but mostly no burning and a weak but decent stream. In the last month I started having intense flares, bladder fullness and a continual vibrating, rumbling spasm of the bladder, and nocturia that would have me peeing every 10 minutes all night long, 6 or 7 hours straight, a few times a week. I started the IC diet about a month ago and it seems to be working. My all night flares went from 3 a week to 2 a week to one last week. The only foods off the friendly column that I eat is brewed coffee with whole milk in the morning, and natural vanilla yogurt with blueberries in the morning. For men it's hard to know if we have IC, or an enlarged prostate. In my case I had both. Treating the prostate with the TUMT procedure a year ago got rid of the retention and intense pain (think burning gasoline and fish hooks). The IC diet is helping with the IC nocturia.

[Butler]

Misdiagnosed:

Originally I was misdiagnosed with enlarged prostate and was prescribed Cardura. Oddly enough it helped with my symptoms and kept me from seeing a urologist for several years, finally there came a time when I was getting up over 6 times a night to use the bathroom and was forced to see a specialist. I don't take Cardura anymore but I think it could help a lot of people with IC.

[bobspez]

... finally there came a time when I was getting up over 6 times a night to use the bathroom and was forced to see a specialist...

I am still going 5 to 6 times a night on good nights. Did the specialist come up with any diagnosis and/or solution. Are you still going 5 or 6 times a night?

Bob

[Butler]

Shade tree analogy:

He did a cystoscopy on me and made the diagnoses of IC, starting me on 100 MG of Flavoxate 3 times a day (which he later increased to 4 times a day) along with one 15 MG tablet of Enablex at night. I think Flavoxate does a decent job but although I'm disabled I remain very busy, caught up in other aspects of my life and frequently forget to take my medication. Night time remains a chore, still getting up 3 to 4 times a night. I have to say eating medication like its food isn't a pleasant way to live a life and I have to wonder what the long term effects of taking this much medication might be on me. I also have a lot of lower back pain which my specialist attributes to IC and I keep a bottle of Hydrocodone on hand.

[bobspez]

He did a cystoscopy on me and made the diagnoses of IC, starting me on 100 MG of Flavoxate 3 times a day (which he later increased to 4 times a day) along with one 15 MG tablet of Enablex at night. I think Flavoxate does a decent job but although I'm disabled I remain very busy, caught up in other aspects of my life and frequently forget to take my medication. Night time remains a chore, still getting up 3 to 4 times a night. I have to say eating medication like its food isn't a pleasant way to live a life and I have to wonder what the long term effects of taking this much medication might be on me. I also have a lot of lower back pain which my specialist attributes to IC and I keep a bottle of Hydrocodone on hand.

Butler,

Thanks for the response. I am going 25-30 times a day on bad days (about 2/3 of it at night in bed), and 9 or 10 times a day (2/3 at night) on good days. So far, I have avoided medication because I found the dry mouth feels worse to me than the frequent urination.

My wife and I are retired so at least I don't have to deal with commuting and work any more.

On my bad days I am passing more than 3 liters of urine,
while on good days I am probably only passing about 1-1/2 liters which is normal.

I am finding that the bad days are going to happen once or twice a week no matter what I do or don't do in terms of diet, liquid intake, exercise, sleep regimen, relaxation, etc. It seems my body has developed this cycle and I am stuck with it for now.

On good days, having a 4 liter plastic wide mouth jug (like you cold brew ice tea in) on the floor next to my bed allows me to get up once an hour or so without fully waking (no walking to the bathroom or turning on lights) so my sleep is adequate.

I have been trying to cope with the bad nights (going every 10 to 15 minutes from 1AM to about 6AM) by wearing super absorbent adult diapers, but they can turn into cement bags in a few hours and get very uncomfortable, which wakes me and defeats the purpose.

Still they offer about 3 hours of total sleep which is better than 1 or 2. Also I have to wrap a second diaper around my waist because they tend to leak out the small of my back once they fill up. Still, that's better than having to wash the sheets and quilted waterproof bed pad when I get up.

I'm sure the biggest challenge of this condition is mental (at least for me). I had frequent urination all my life and never gave it a thought. Now at 65, with no pressing tasks, losing a night's sleep makes me feel like a zombie all day and my natural instinct to solve this problem just hasn't worked out so far.

Best wishes,

Bob

[Butler]

I’m just a young man of 61 lol, and can deal with my day but getting up at hour intervals at night wasted me, even now it’s a depressing thought go to bed because I know what waits for me tonight…take care.

[bobspez]

I’m just a young man of 61 lol, and can deal with my day but getting up at hour intervals at night wasted me, even now it’s a depressing thought go to bed because I know what waits for me tonight…take care.

Using the plastic 4 liter jug by the side of the bed really improved things on nights when I wake once an hour. I have been using it for almost a year. I wake up, put my feet on the floor, pick up the jug the by the handle, unscrew the top and put it on the bed, stand, get a strong grip on the jug, pee in the dark into the jug, sit on the bed, screw the top on, return the jug to the tray on the floor, go back to sleep.
It's all relative, of course. To me getting up just once an hour is a decent night's sleep. Getting up just 3 or 4 times a night is a godsend.

Bob