My story...... Need help

[smackman]

I woke up in Oct. 2012 with my penis tip feeling raw but it looks fine. My Penis will burn at times; not when I Urinate but my Penis burns like someone put bengay on my Penis. My frequency is good IMO.

I have been to 4 Urologist. All my test come back negative; No infection. If I lay down, The pain will subside. I have no problems sleeping at night; I might get up 2 times to pee in a 8 hour period.

My Penis tip always has the sensation of being raw; I cannot stand for underwear to touch it. My stomach feels bloated except when I lay down.

The last Urologist I saw 2 weeks ago says I have Interstitial Cystitis of the bladder causing refer pain to my penis and the raw feeling on the tip of my penis. He did a potassium test to make this diagnosis; I tested positive. He prescribed Elmiron and Elavil.

Any thought/help/suggestions? I could write a book and have a lot more I could say about being misdiagnosed and also made to feel like a idiot by certain Urologist.

[webslave]

Carl's Starter List:
viewtopic.php?f=34&t=6475

[smackman]

I have filled out the signature. I want to point out that I have no issues when I lay down at night. If I am going thru a "flare" I will lay down in the bed and the pain will eventually subside generally within a hour. A bad flare for me is when my tip feel extremely raw and my Penis will start burning.

My penis tip always feels "raw" but does not look like it is raw. It has to be inside the urethra. I never have pain when I urinate. I do feel bloated most of the day except when I lay down..

I have had a MRI and cat scan of my mid and lower back; I go tomorrow to find out the results. I have never had a urine test come back positive for infection. My prostrate checks good with a .7 psa.

I want to get well; This has altered my life big time. I have wonderful family support. I am not totally convinced I have IC but am doing the treatment for it.

[webslave]

I want to point out that I have no issues when I lay down at night.

When you lie down, the pelvic floor muscles relax.

You should consider trigger point treatment.

[smackman]

I live wayyyyy in the country. Can you tell me what trigger point treatment is?

My daughter is a Registered Occupational therapist with 6 years in the field. Do I need a therapist for this or a Chiropractor or what?
Thanks

[webslave]

You can google trigger point treatment for a better explanation that anyone here can give. Or read a good book like

Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 2., The Lower Extremities By Janet G. Travell, David G. Simons

I presume you already have Dr Wise's book?

You need a specialist physiotherapist for intrarectal treatment:
http://www.pelvicpainhelp.com/

[smackman]

I was diagnosed with Interstitial Cystitis by a Urologist using the Potassium Chloride test. I had a catscan ran of my lower abdomen 3 weeks later; my prostate is enlarged measuring 5.3 x 3.8 cm; also my bladder is moderately extended.

Anyway, I feel my issue could be Chronic non-bacterial prostatitis because of the pain at the end of my penis and a enlarged prostrate. Maybe I have IC AND Chronic non-bacterial prostatitis..

I take Cystotropek 3x a day but now am wondering if I should be taking Quercetin; Both have Quercetin.

Am I taking the wrong supplement or does it matter? Just reaching for advice. This penis tip irritation/pain is making my life "difficult". I have had this pain for 8+ months. My frequency is good;My bladder empties..

[webslave]

Maybe I have IC AND Chronic non-bacterial prostatitis..

It's common to have inflammation in the prostatic urethra as well as at the bottom of the bladder, near the outlet. I had that. These conditions cannot be neatly divided up, even though some people do try to do that (it's become a political issue because research funds are segmented by condition).

I take Cystotropek 3x a day but now am wondering if I should be taking Quercetin; Both have Quercetin.

Take any accredited quercetin product only. That's where the research is. Cystoprotek does not have the research backing.

[smackman]

How long did you have this inflammation? How did you get rid of it?

[webslave]

For about 10 years. I got rid of it as described in my signature.

[Wolfcub]

webslave, you don't have urethral/penile tip irritation/burning anymore? That's my most difficult symptom to control (didn't manage to yet).

[webslave]

No, haven't had it for so long that's hard to remember it. Hold on, yes, I remember gripping my glans penis tightly because of the pain and burning at the tip. Nasty stuff. The good news it that it goes away.

If you have done all the relaxation and stretching and trigger point treatment and any accredited quercetin product and still have symptoms that are not getting better, I always recommend the removal of gluten from the diet. 99% of people with celiac disease are not diagnosed.

[Wolfcub]

Well, I've started take Saw Palmetto for a few weeks, no change in symptoms so far. Alfuzosin helped to some degree with the urinary irritative symptoms and the abdominal pain (they are now less frequent).
Unfortunately there's no physical therapist dealing with the pelvic floor in my area. I will be seeing my last urologist and maybe a psychiatrist next month. Maybe muscle relexants/neuromodulators (such as pregabalin, amitriptyline) could also help with symptoms and especially the constant penile sensations? My sleep quality is also still poor, as my abdominal aches tend to increase when I go to sleep and cause me to wake up.

[webslave]

No harm in trying amitriptyline, which does help many men (and will certainly put you into a heavy sleep). But keep in mind some of the people who have had problems with it.

Elavil can have hormonal effects taken long term, and sometimes lead (in a few men) to gynecomastia (breast swelling) and impotence and/or decreased libido.

Also viewtopic.php?f=20&t=5645

[spencerryan1]

Elavil did not do much for me and gave me sleep paralysis; it was pretty scary. So there are definitely some side effects with that drug.