My story-sound familiar to anyone? Possible CPPS?

[Joconne16]

A few months ago I began noticing that I had very poor sexual stamina before ejaculating. Additionally, orgasm seemed much more intense. Occasionally I experienced mild burning in the tip of my penis but figured it must be a reaction to soap getting inside.

Then, about a month ago, I began to experience mild burning pain in my urethra when I’d pee. It grew worse day by day until I developed non-stop burning pain that never goes away. It can fluctuate from mild to excruciating. At times I’ll also get a gnawing, soreness in my penis shaft in the tissue. My penis tip has become very sensitive and easily irritated. No visual signs of change anywhere on pelvic area.

In the last month I’ve had a CT Scan, cystoscope, been put on antibiotics, anti inflammatory medication, alpha blockers and have had no improvement. Benzodiazepines seem to help a bit but make me groggy.

I’m really at my wits end. I’ve seen two good urologists in Southern California and they don’t have any new suggestions. I’ve become terribly depressed and withdrawn and don’t know where to turn. Can anyone offer similar experiences that have found relief?

[eltenso]

Welcome to the forum Joconne16!
Unfortunately, urologist have very little to offer when it comes to what they used to call "prostatitis". They are surgeons, and focus on organs, so they tend to be blind to neuromuscular conditions. You should try Pelvic Floor Therapy. Since you live in California, I recommend Tim Sawyer. His practice is in Los Gatos, CA. He is one of the best trigger points therapist in the country, and has a lot of experience with pelvic floor issues, as he has worked with David Wise for years.

[NeoKortex88]

Hey

I had 8/10 burning pain, ED, bleedy anus and couldn’t sit. I'm fine now. Took me 6 months of doing the uptown mike stretches from YouTube, hot baths and foam roller. I'm doing stretching exercises now. You will be fine it just takes a while. Go get the mental part solved with antidepressants or something.
BTW fill in your signature

[Joconne16]

The fluctuating burning sensation in my urethra has continued to increase in intensity over the past month since onset. I’ve been given the usual tests and pills by the urologist and he says there is nothing physically wrong aside from a little inflammation in the ejaculate duct. Pain is worse after urinating and sex but the level of pain is increasing. Burning. Like cut glass in my urethra.

Has anyone ever had pain that continues to grow worse by the week? I’m battling this as best as I can but what can I do if the pain just continues to grow and grow?

Anyone else have experience like this?

I could really appreciate some help. I laid in bed this morning and couldn’t get up to face the day. Suicide is beginning to cross my mind more and more.

[webslave]

Please list all the things you have tried so far to help the situation.

[NeoKortex88]

Suicide is a final solution to a temporary problem ;)
I have also been suicidal for better part of 6 months.
You shouldn’t be because you will be better and you don’t want
Tinnitus from stress.

[Joconne16]

I’ve tried several different antibiotics, anti-inflammatory, gabapentin, Flomax, and the only thing that improved symptoms is a benzodiazepine called Klonopin.

Has anyone heard of symptoms slowly worsening over weeks before they eventually start to get better?

[European]

Almost all of us did have wax and wane of the symptoms and the low is sometimes terribly low...But there are surely better times ahead of you.

[webslave]

Almost all of the things you've tried are pretty useless. Start here:
viewtopic.php?f=5&t=6475

[Waltknox]

I have to agree with Eltenso. Get into see a physio experienced in Pelvic floor pain they will help you find the trigger points that are causing the pain. Once you realize you can treat yourself and find some relief your mental state will improve which is half the battle. Tim Sawyer is one of the best I hear but if not feasible to go to him find someone nearer to you ASAP. Also get started on learning how to meditate... an easy way to start is by doing body scans which mindfulness books teach... also lots of body scans on the internet. regards Walt

[Joconne16]

Aside from my constant urethral pain, I’m getting increasing sensitivity at the tip of my penis that gets very painful if it rubs against my clothes. It seems to be getting worse in spite of me using physical therapy and Valium suppository. Anyone ever experience this? Solutions? Thank you so much for any help you can provide.

[webslave]

Solutions?

viewtopic.php?f=37&t=9061

[Joconne16]

I’m writing to give you an update on the last couple of weeks and to ask a few questions..

Two weeks ago I drove to see Dr. Nevin Smith (Dr. Wise’s recommended urologist who diagnosed me with CPPS). Since then, my symptoms of pain in the penis tip, sensitive skin on penis tip, deep gnawing pain in bladder, feeling like I always need to urinate, and painful urination have continued to worsen. For two months now my symptoms have continued to progressively get more painful.

Last Thursday I drove up to Los Gatos and met with Tim Sawyer. He said my symptoms and personality are classic for a CPPS sufferer and he felt confident that I will recover from this condition using the Wise-Anderson protocol. He found several internal trigger points on either side of my prostrate and treated them both Thursday and again on a Friday.

Tim is a great guy and I have confidence in his opinion. I am, however, confused by a complete lack of improvement from the back-to-back therapy sessions. In fact, my symptoms are as bad as ever. In the last couple of weeks I’ve developed such sensitivity (coupled with stabbing pains in the urethra) in the penis tip that I’m now getting a constant feeling of arousal. Just the slightest touch is causing a feeling of arousal while simultaneously creating a stinging, sharp pain in the tip of the penis.

I’m so confused. If my symptoms are a classic case, wouldn’t it be reasonable to expect even a small amount of relief from the PT? I’ve been stretching and doing everything I can but have yet to see the progression of the discomfort cease. I don’t understand why it continues to worsen in spite of my actions.

It’s now difficult to walk a short distance without the pain and sensitivity becoming unbearable. Sitting also has become very uncomfortable due to severe pain in the urethra. Additionally, I am leaking clear discharge throughout the day and this continues to worsen as well.

I’m losing hope. Is there some sort of unconscious emotional pain that is manifesting as CPPS pain? Is there a radical change (career/relationship) that I need to pursue that I’m unaware of? I’m trying everything here and nothing is working.

I’m taking Quercetin, magnesium, cod liver oil, gabapentin and a good multi-vitamin. In the last four months I’ve tried Accupuncture, stretching to open my hips, Chinese herbs, internal PT, meditation and chiropractic therapy. I have yet to find anything aside from Klonopin that improves my pain. I am first on the waiting list to attend the Wise-Anderson clinic at the end of this month. I’m afraid I’ll need to take a leave of absence from my job soon. I’m not even sure if my long-term disability insurance will recognize CPPS as a diagnosis to pay my claim.

Please help if you have any suggestions.

[webslave]

Unfortunately, symptoms frequently get worse at the start of treatment. Trigger points need frequent manipulation during treatment, or they simply flare up. The initial worsening of symptoms is a well known phenomenon. And it happens to trigger points anywhere in the body.
viewtopic.php?p=34283#p34283

[NeoKortex88]

Hey, I had a worsening too but I welcomed it as a progress. However it didn't steady decline for me once I stretched. It more likely became temporarily worse after stretching then getting better. Like two steps forward one step back. But its possible that you just aren't yet at your max bottom dysfunction and your muscles are tensing even more in response to the pain. The clear discharge could be urine that's left after voiding and didn't totally leave your system. I guess all other checks have been negative (STD etc.).