Can any of you guys help?

[Dean76]

Hello everyone, I am a 26 year old male and was just diagnosed with IC about 3 months ago after being misdiagnosed with prostitis for 7 years. Symptoms have gotten a little worse over the years. My problems consist of bladder pain and frequency (especially while sleeping and awakening), pain after ejaculation, and loss of sexual stamina. These 3 major problems did not start occuring until about 4 years after I started having symptoms of urinary frequency and bladder pain. I'm getting pretty fustrated with this disease. Every night I wake up about 5:00 A.M from pain and rarely can get much sleep after that until my alarm goes off at 7:15. I always have a lot of pain in the mornings but the pain will usually slack off around lunch. I'm a professional landscaper and work all day in the heat and desperatley need good rest to perform everyday. Sex is now a problem for me as well. About 15 minutes after an ejaculation I will become severly irritated for the next 24 hours and won't be able to sleep that night without taking a pain killer. I also cannot last as long during sex as I did prior to 3 years ago due to being so tired, inflammed, and irritated. I was never "everlast" but now its hard to last even a minute. I kind of lost interest in sex altogether. Its not worth the pain I hve to go through. My gilrfriend is really loving and understands though. Have any of you guys out there had similar problems. I hope some of you can help. I have been taking Elmiron for 2 months and hope it will do something to releave my symptoms. I take an anti-depressent sometimes at night to help me sleep. I also take pain killers(Lortab, Lorcet, Tylenol III) when I'm really in pain. I hope I don't get addicted to pain pills but its the only thing that has helped. I just took a Lorcet about 30 minutes ago. I hope I'm making sense because they cloud up my brain. Please let me know if any of you can help. Any suggestions or comments would be greatly appreciated. Sincerely, Dean

[ICNDonna]

I'm glad you found the IC Network. I know you'll find a lot of support and information here. You'll want to read the information in the Patient Handbook --- it's on the "Browse Ou Site" pull-down menu at the top of this page.

I don't have any good answers for you, but would definitely encourage you to take pain medications when needed. It takes far less pain medication to control pain if you take it early on, rather than waiting for the pain to get out of hand.

Sending an encouraging hug,
Donna

[Kara]

Dean,

Try the ICN's resource for men here:

http://www.ic-network.com/men/

This might be a good place to at least start.

There's also a section of sex and IC that may help a bit:

http://www.ic-network.com/handbook/sex.html

Best Wishes to you!!!! WELCOME!!!

Kara <img src="graemlins/hi.gif" border="0" alt="[hi]" /> <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[Jim in San Antonio]

Dean,

I was diagnosed with prostatitis, then (when it wouldn't go away) was told it was just "anxiety" (by a urologist). Then several years later, found out I had prostate cancer (at age 49). But the "constant sensation of incomplete bladder emptying" (my main symptom) was not affected by having the prostate removed. My first 3 urologists wouldn't even "consider" the possibility of IC in a man; the 4th did urodynamics with potassium leak test, which was negative for IC. But two pain medicine doctors said they thought it was IC and would treat it as such. Had my second hypogastric plexus block a few months ago; think it may have helped in my case. It's probably a 50/50 proposition in most cases, but would suggest you at least consult with a pain medicine doc.

How were you finally diagnosed? Hydrodistention?

Ambien could also help you with sleeping. Most physicians will say you shouldn't use it for more than anything short-term, but they haven't kept up with the medical literature which indicates it is safe for long-term use (FDA hasn't caught up with the medical literature either; they've approved it for only short-term use; therefore, many insurance companies won't cover it for long periods since it's so expensive; maybe someday this will change).

Jim

[Max]

Hi,

I am a male with IC as well. I am at work now but would like to correspond with you.

Please email me at [email protected]

[Dean76]

Its comforting to know the women at the ICN care about the men as well. I appreciate the support Donna and Kara. Jim I believe it was Hydrodistension. I was put to sleep and the Doc filled my bladder with solution through a catheter to look around. He said he noticed pin hole bleeding and an inflammed bladder wall. At this time he also performed a bladder and prostate biopsy which both came back as normal. Prior to the biopsies I also had the urodynamic test in which I was very sensitive to the pottasium solution. The pottasium test is what gave my Doctor the first clue that it may be IC. Was it "Hypogastric plexus block"? This term is new to me. Is it kind of like the DMSO treatments?

[Jim in San Antonio]

Dean,

Superior hypogastric plexus block is nothing like DMSO treatments. (My response to another thread on this message board explains my aversion to having anything shoved up my urethra.) There were several posts about the block under "Other Treatments" and "Pain Management" during the past few months on this message board, so I'm not the only one trying it for IC-type problems. Pain medicine specialists (subspecialty of anesthesiology) do these, not urologists.

In the simplest of terms, it involves placement of a needle between the spine and aorta. So it's not without potential risks (you don't like to hear them say "whoops"). But, on the other hand, I'd rather have it than a lot of other things (it's much less scary to me). I think my last one (my second) two months ago may have helped me.

Historically, the procedure was invented in the late 1980s for cancer pain:
http://www.cancerpain.org/Html/Physi.../superior.html
But it's been used more recently for other types of pain "down there": Rosenberg SK, et al. "Superior hypogastric plexus block successfully treats severe penile pain after transurethral resection of the prostate." Reg Anesth Pain Med 1998 Nov-Dec;23(6):618-20

My first one (three years ago) was done without any sedation (would not recommend that at all). The latest was with I.V. Diprovan (propofol) (a very pleasant experience).

Jim

[jameshale]

I have had good luck with the following regimen:
Self-instilled Heparin (see your urologist) once
a week, Oral Aloe Vera inner gel capsules morning
and evening before food and flax oil. I also
take most of the strongest over the counter
anti-inflammatories (Vit C,E,Quercetin, Bromelain
etc). After the Heparin instillation, I
immediately do prone exercises with my legs (on back and stomach) to massage the heparin deep into
the interstitial tissues and leave it in at
least an hour. Also I sit on special cushions
made by taking soft kitchen chair cushions and removing the center of the padding.

[jameshale]

Forgot to mention the Heparin is mixed in
a Sodium Bicarbonate solution (to lower
the PH) before injection into the bladder.

[jameshale]

Not being a biochemist, I meant to say
"lower the acidity" (more basic). That
may be raising the PH?