No pain - just constant sensation of needing to urinate

[CMT23]

A quick update. I had a nerve block of the dorsal nerve of the penis. The outside went numb, but my urinary discomfort remained the same. I had an injection of Pethidine and then another 30 minutes later. This time, the Pethidine did not make me feel any better. I got two and a half weeks into Nortriptyline (worked my way up to 75mg a day) and I was feeling hugely depressed with no effect on my urinary discomfort. I stopped cold turkey and now feel less depressed. I've been having a lot of stress in my personal life lately and overall the symptoms have been worse. I still get relief after a hot bath and then lying down doing the relaxation. I haven't been doing it every day since about 3 weeks ago when things really got stressful for me, but I will start it up again soon.

Next I think I will try Memantine and maybe another antidepressant.

[deeparth]

One more person here with just Urination sensation/discomfort in the urethra and penis.

Not sure how you folks are managing for 15 years. I am going crazy within just two months and already thinking of prostate surgery.

I am also someone who was going through some emotional distress when this started.
I also had some sex with my partner without cover two days before it started. so completely not able to rule out an infection though the cultures have always come back negative and one month on Cipro did not help.

[fobo]

Normally someone would ask - what's wrong with your prostate...Maybe you take a prostate supplement like saw-palmetto and try to stay calm

[deeparth]

Now the doctors are changing from Prostatitis to Pelvic muscle issues or a bladder dysfunction.

Not knowing what's going on is pretty frustrating. Do any of you have done a Cystoscopy or Urodynamics if it is so desperate and tried to find the cause?

[Wolfcub]

Now the doctors are changing from Prostatitis to Pelvic muscle issues or a bladder dysfunction.

Not knowing what's going on is pretty frustrating. Do any of you have done a Cystoscopy or Urodynamics if it is so desperate and tried to find the cause?

Cystoscopy is usually done to rule out pathologies such as strictures, bladder neck hypertrophy, stones and tumours (http://www.webmd.com/a-to-z-guides/cyst ... 692?page=4). It might also been used with hydrodistention to see if there are Glomerulations in the bladder lining which might indicate Interstitial Cystitis (http://www.ichelp.org/sslpage.aspx?pid=845).

I did it last summer (with general anesthetic) due to my chronic LUTS symptoms (irritative and obstructive ones - constant pressure/slight burning sensation in the tip of penis, urinary frequency, frequent sensation to urinate, lower abdominal pressure and pelvic burning sensations/dull aches and weak urinary stream), but nothing abnormal was found.

I also did a flowmetry test last year, so my symptom was confirmed: my urine stream is somewhat weak (average: ~13 cc/min, max: ~18 cc/min when bladder has ~500cc). This is a very simple test, usually part of the urodyamics studies (http://www.nlm.nih.gov/medlineplus/ency ... 003325.htm).

Those two tests may help to diagnose CP/CPPS in addition to your clinical symptoms and clinical story/anamnesis. It appears that in many cases of CP, there are BPH-like symptoms because the prostate tend to be chronically tender/inflamed thus affecting the functioning of the lower urinary tracts.

[CMT23]

Just a quick update. I haven't been posting lately as nothing very new to report. I did the Wise Anderson protocol for 16 months without any real relief. For the past three months I have continued with the internal trigger point therapy, but haven't been doing the relaxation. Will start that up again once a day at least as I think it is good for me in general. But overall I am pretty disappointed. I tried a long list of medications over the past year and there is nothing that gives consistent relief that I have found yet.

[CMT23]

Today and the last few days, my symptoms are about as bad as they have every been. I feel right on the edge of a complete breakdown. It's like I drank 20 beers and now need to urinate urgently. But after I go, that feeling is still there - for days at a time this time round.

I went to the pain doctor two days ago. She said that she can try an inferior hypo gastric nerve block. She has no idea if it will help and it does, it will be temporary and we will have to do many more blocks and wait and see how long the relief lasts each time. Does anyone have any experience in this area? It's not cheap and needles going through my back and into my pelvis does not sound fun.

Very discouraging after 16 months of religiously following the Wise/Anderson protocol.

[webslave]

The Wise-Anderson Protocol is not a cure-all, and was never claimed to be, by anyone. You don't have chronic prostatitis / chronic pelvic pain syndrome anyway. It sounds more like overactive neurogenic bladder.

[CMT23]

Thought I'd post a quick update. For the last 8 months or so, I stopped the Wise Anderson protocol and basically decided to live with it and just try to manage the symptoms. Most of the time it's a 5 or 6 out of 10. The last week it's been 9 out of 10, thus my return to the forum.

I'm trying Lexapro now as - into the 2nd week, without any relief.

As webslave says above, perhaps I don't have CPPS. But when I saw Tim Sawyer, he was confident that I had trigger points at the front of my pelvis that relate to the tip of the penis where I feel the discomfort. Perhaps 16 months of the protocol wasn't enough.

Perhaps I have an overactive neurogenic bladder, but none of the OAB meds help. They just make it more difficult to urinate when I really do need to go.

If I hit on the solution, I will be sure to come back and post. Meanwhile, if anyone else has found relief for similar symptoms, please do post.

[Caedar]

Have you ever tried Atarax (hydroxyzine) or Elmiron (pentosan polysulfate sodium)? Have you tried a low-acid diet and increased (yes, increased) water intake? Have you tried Prelief tablets with your meals? Your symptomology sounds very, very similar to interstitial cystitis/painful bladder syndrome, which is a component of my own CPPS.

[CMT23]

Have you ever tried Atarax (hydroxyzine) or Elmiron (pentosan polysulfate sodium)? Have you tried a low-acid diet and increased (yes, increased) water intake? Have you tried Prelief tablets with your meals? Your symptomology sounds very, very similar to interstitial cystitis/painful bladder syndrome, which is a component of my own CPPS.

Thanks for the reply. Have tried all apart from Prelief. It does sound like IC, but when you look closer, I don't think that's what I have.

1. Symptoms appeared suddenly immediately after ejaculation. After a few months, symptoms disappeared completely and then a few months later reappeared again. During the few months when symptoms disappeared, I was eating plenty of acidic food.

2. Acidic food has no real affect on my symptoms. Nowadays alcohol makes me feel worse, but still after having a drink, I get 30 minutes or so where I actually feel noticeably better. I used to get very significant relief from lying down, taking 2-5mg of valium and drinking 2 or 3 glasses of red wine.

I still wonder if it is an issue with trigger points in the pelvis. I attended the clinic in Santa Rosa and followed the protocol religiously for 16 months. Tim told me I had clear trigger points at the front of my pelvis and that my symptoms were a classic result of this. But I really would have expected to see some noticeable improvement after 16 months. Maybe I needed to follow the protocol for 2 or 3 years.

I am interested to try the Urgent PC - https://www.uroplasty.com. But no doctors have it here and they don't sell directly to consumers, so not sure how I am going to swing that one.

The search continues...

[CMT23]

Just to add to this. I don't think I took Elmiron for more than a month and it seems that it needs up to 6 months. So I suppose I will try that. But I really wonder how if my bladder lining is not healthy, how there have been times that alcohol has made me feel better - even though it doesn't anymore. Also, no flares from spicy or acidic food outside of (especially) hot coffee an.

I am trying to get ahold of some Uribel. Perhaps it will give some relief.

Also I am interested in trying bladder instillations. While inserting a tube up my penis is not my idea of fun, if it brought relief, I would gladly do it as often as needed.

http://www.ichelp.org/page.aspx?pid=367

I am afraid that the doctors here won't be aware of this method. I am waiting for a reply to my emails about this. If not, then perhaps I will look at putting together the solution myself and buying a catheter...

Would be great to have a doctor who actually wants to learn and understand and help. So many of them seem very stuck in their ways and seem more content to tell me that I am imagining my symptoms then to look into something new.

Meanwhile I am trying to get some hospital here to buy the Urgent PC.

And in the back of my head I wonder if all I need is more internal physical therapy and relaxation. It is indisputable that pressing lightly on the tissue adjacent to my prostate exactly replicates and exacerbates my symptoms. This is what gave me so much hope that I was on the right track with the protocol from David Wise and Tim Sawyer. And maybe I was, but 16 months wasn't long enough.

I suppose I should begin the protocol again. Nothing to lose, but time...

I will let you know how I go.

[Caedar]

And in the back of my head I wonder if all I need is more internal physical therapy and relaxation.

About 90% of people with any sort of pelvic pain have some kind of pelvic floor dysfunction. These will indisputably help; don't forget external PT as well (abdominals, iliopsoas, adductors, etc.; where your problem areas are could vary)! I've found it even more helpful than internal PT.

[CMT23]

The thing is that I don't have the classic chronic prostatitis / chronic pelvic pain syndrome symptoms at all. No pain or burning of any kind. I only feel aching in the perineum if after ejaculating I stand up and walk around immediately. If I lie still for 10 minutes and then get up, I don't have this problem. That is why some here question whether the protocol even makes sense for me.

I still have hope based on the fact that I I can recreate my symptoms exactly by pressing on the muscles adjacent to the prostate. Also, as time went by, I could apply more and more pressure, which tells me that things were being stretched.

I did the protocol for 16 months including at least 30 minutes daily of stretching the muscles you mentioned. Perhaps I was too impatient to stop after 16 months. Anyway, I have decided to try it again. It takes time, but I live alone for 3 weeks of the month so it is just a matter of deciding to do it.

I will keep you updated!

[CMT23]

Just ordered a four month supply of CystoRenew and Desert Harvest Aloe Vera.

http://www.douglaslabs.com/product_item ... 01810-120X
https://www.desertharvest.com/shop/index.php?crn=205

I has tried any accredited quercetin product and Cysto Protek for 2-3 months without any noticeable improvement. To be fair, the latter claims you need to give it 4 months.

If these fail, I'll look at Elmiron, but it's a massive expense over here and the possible side effects don't look fun.

This is an expensive hobby... And in the end, maybe all I need is more internal massage and relaxation. I will start that again too.

I am also thinking that I might as well try the IC diet. Every food that they say not to eat is a food I eat every day. However, I have had times feeling pretty good while eating things like tomato sauce, salsa, soy products and more, so I am not sure that diet is my problem. I suppose it should be ruled out, so I will try to figure out 4 weeks coming up here to give it a go.