New to the Board

[mikey33]

Good Afternoon Everyone,

I have been reading the board for a few days, but I figured it was time for me to introduce myself. My name is Mike and I live in Pennsylvania, USA. I am 32 years old, happily married, and have a 2.5 year old daughter, with a second daughter on the way (in Sept.) I have always been very, very active, playing ice hockey collegiately, and also football, lacrosse and rugby in high school. Over the last year, though, I have let my fitness levels fall, and I am not nearly as active as I once was (tough with a stressful job and another baby on the way!) Anyway, my first flare-up (now that I realize what this could be) came about 5 years ago. I was going through a stressful divorce, job, was drinking a lot, and I was biking about 30 miles every 4 days. I noticed a burning sensation when urinating, and I even had a clear, sticky discharge from my penis (all clear on STD's.) All of this subsided in a week and now fast forward to 2 months ago. One night my wife and I had sex, and the next day I noticed a sharp, stabbing pain whenever I touched the back side of my right testicle. Went to the doctor and he said it was Epididymitis and prescribed Bactrim. In the first 24 hours of Bactrim, the pain the testicle was gone, but then started this annoying burning in my urethra. That persisted (and is still here today) but I had to stop Bactrim after 4 days because I was allergic to it. Ended up on Amoxicillin for a week, but then a urologist put me on Doxycycline for 2 weeks, and now I am on another 2 week cycle. Through this time, if anything, my pain has gotten worse. I have constant burning in my urethra/penis, perineum pain/golf ball, a crazy urgency to pee that does not go away, even though small amounts come out and a burning on urination, and lastly yellowish semen (had that for years though.) I have had at least 8 urine tests - all negative, a reverse urethrogram - negative for strictures, a CT scan - showed mild prostate enlargement with mild mass effect on bladder and centralized calcifications, and I had a semen culture that showed some Staph infection (which I understand is quite common in most semen.) One urologist (who specializes in Prostatitis) gave me a DRE and during that he said I was feeling tremendous pain, not when he touched my prostate, but when he hit areas/muscle around it. He said to stop antibiotics and give it 6 weeks, and if that doesn't subside, he would schedule me for PT.

I guess my main things are this:

- I have panic disorder when it comes to my health and I am freaking out - the pain has been so bad that I have considered suicide after only 2 months
Has anyone else ever felt that bad from this? I am on Zoloft 50 mg and have Xanax if need be and I start Cognitive Therapy at month end.

- Is this urinary craziness potentially tied to muscular issues, or could it be the MILDLY enlarged prostate flaring everything up?

- I have been getting crazy nocturnal erections since this started and when I do get any erection it is like rock. Sorry to be so graphic, but has anyone else had that? It almost feels like the muscles/nerves inside are so inflamed that it is bringing more response to my penis in blood flow. Unfortunately, after orgasm, the burning and aching comes out like a son of a "you know what."

- Also, I had lower back discectomy on L4/L5 disc in 1998 and have fought that every year. I wonder if that now is contributing to my potential pelvic issues? I sit in a car all day and drive about 500 miles a week for work (sales.) I am always sitting in appointments or in front of a PC. That cannot help, but why NOW is it flaring? I have been under considerable stress recently, especially when this started.

I appreciate any feedback from you guys. I know your advice isn't "medical" advice, but it feels good knowing that there are others out there, and that these useless doctors (for the most part) do not seem to have a freaking clue! I will try to chime in anywhere I can, but I am still a newbie in pain.

Wish I could have met/introduced to you all under other circumstances, perhaps over a beer or 10.

Cheers, Mike

[Jay]

Hi Mikey,

Welcome to the forums. As a layman, it sounds to me like you certainly do have a probable case of CPPS. You're very lucky to have a urologist who's up to date, as reflected by his thinking to check your pelvic floor muscles. Giving PT a try would be worthwhile.

- I have panic disorder when it comes to my health and I am freaking out - the pain has been so bad that I have considered suicide after only 2 months
Has anyone else ever felt that bad from this? I am on Zoloft 50 mg and have Xanax if need be and I start Cognitive Therapy at month end.

Yes, I was at the point of suicidal thoughts after my condition got really bad. I have the same sort of health panic. In time, I learned to deal with the situation better, and those feelings became a thing of the past. It's seldom the case that chronic prostatitis / chronic pelvic pain syndrome goes on forever without any improvement, and that transient situation certainly isn't worth dying over. That said, suicide discussion is an extremely touchy subject on the boards for legal reasons. I do strongly encourage you to seek out any and all help you need, and to attend that CBT appointment.

- Is this urinary craziness potentially tied to muscular issues, or could it be the MILDLY enlarged prostate flaring everything up?

Tough for me to say, but urinary issues can most certainly be caused by pelvic floor dysfunction. Just as a loose pelvic floor can lead to incontinence, one which is too tight and/or bound up with trigger points can cause urgency.

- I have been getting crazy nocturnal erections since this started and when I do get any erection it is like rock. Sorry to be so graphic, but has anyone else had that? It almost feels like the muscles/nerves inside are so inflamed that it is bringing more response to my penis in bloodflow. Unfortunately, after orgasm, the burning and aching comes out like a son of a "you know what."

I would guess that it's possible. Erections are supported by pelvic floor muscles, such as the bulbospongiosus. As to pain after orgasm, that is a hallmark symptom of CPPS. Almost every patient has it.

- Also, I had lower back discectomy on L4/L5 disc in 1998 and have fought that every year. I wonder if that now is contributing to my potential pelvic issues? I sit in a car all day and drive about 500 miles a week for work (sales.) I am always sitting in appointments or in front of a PC. That cannot help, but why NOW is it flaring? I have been under considerable stress recently, especially when this started.

I lack the knowledge to offer any opinions on the discectomy. However, lengthy sitting and stress are both common triggers. We very rarely have answers as to why chronic prostatitis / chronic pelvic pain syndrome starts at any given time, and after the required medical tests are done, it's usually more fruitful to stop looking back. I found doing that to be a kind of mental torture, personally.

[webslave]

Went to the doctor and he said it was Epididymitis

The Final Straw...

but then started this annoying burning in my urethra.

... that broke the camel's back.

... and lastly yellowish semen (had that for years though.)

Subclinical UCPPS brewing, smouldering.

I was feeling tremendous pain, not when he touched my prostate, but when he hit areas/muscle around it.

That's good, it means you know what's wrong and can fix it.

I have panic disorder when it comes to my health and I am freaking out

• Typical for patients in this group
• Try to stop it, it makes things worse

the pain has been so bad that I have considered suicide after only 2 months

We all have, but looking back after you get better, it seems ridiculous. Banish the thought.

Is this urinary craziness potentially tied to muscular issues

Yes. Prostate mildly enlarged because nerves involved in the pelvic floor dysfunction are irritating it (cross-talk).

I have been getting crazy nocturnal erections

The result of irritability in the nerves and mild inflammation in the GU tract.

after orgasm, the burning and aching comes out like a son of a "you know what."

Textbook CPPS.

- Also, I had lower back discectomy on L4/L5 disc in 1998 and have fought that every year. I wonder if that now is contributing to my potential pelvic issues? I sit in a car all day and drive about 500 miles a week for work (sales.) I am always sitting in appointments or in front of a PC. That cannot help, but why NOW is it flaring? I have been under considerable stress recently, especially when this started.

All of these can be contributing factors.

[samgg10]

All of your symptoms point to chronic prostatitis / chronic pelvic pain syndrome (and little else). You've had all the tests & the urologist seems to agree. Make it a working hypothesis (so you don't go crazy).

First thing, get rid of the panic. Stop researching all of the conditions/infections/diseases you don't actually have (everyone does this). That kind of "panic research" will make you substantially worse off in the short-term, and it's perversely addicting. From everything you've said, you don't have cancer, enlarged prostate, PNE, IC, etc. You have CPPS. You'll recover.

The urinary craziness is all referred pain from trigger points on your levator ani muscles. I've had all these symptoms. The 'urgency' feeling is actually a referred pain from muscles RIGHT NEXT to your prostate (superior levator ani). That particular muscle refers pain to the tip of the penis & it's hard to differentiate that feeling from "I have to pee immediately." If someone were to palpate that muscle, you'd feel a super-intense recreation of your urgency; the next step is for a PT, etc., to hold that pressure for 30-90 seconds and/or massage it out until the pain dissipates a little (the muscle is relaxing) even as the pressure remains steady. Over time that technique dissolves the pain. You'll find that each of your symptoms corresponds to trigger points found in specific muscles (HITP has helpful diagrams).

I've got the nocturnal stuff too. It's hysterical. I don't think it's a specific symptom, maybe more of a reaction to the urinary symptoms.

Keep active, but stretch. Certain things may make you worse off in the very short term (biking is a common culprit), so maybe swap that out for something else if you have to, but don't quit whatever is left of your active lifestyle. Exercise is great in general & especially good at dissolving whatever anxious thoughts you might be having.

Also, and for me this was the hardest part, you ought to dive into this relaxation/meditation stuff. Maybe it's the sort of thing you used to laugh at (was for me). Get over it. A few relaxation techniques and modifications-of-thinking (I know...but it's all reasonable) can make a big difference over time, and something like a 30-minute relaxation session (with practice) can yield pretty astonishing results -- immediately.

It's the combo of active lifestyle & high stress that gets most of us. The stress is the thing to control. Good physical therapy will knock out the rest (incl. self-stretching & trigger point release; you should at least learn to treat your external trigger points on your own). Read "A Headache In The Pelvis" asap; it'll start to make sense.

All of this pain is temporary. It diminishes. Then it goes away. In my case, symptom by symptom. You start to feel better for a small window of the day, and the window gets larger over time. You'll flare up from time to time but whatever, you deal. Because it's temporary.

Best advice: forget all of the "how did this happen" and focus on treatment.

Good luck.

[mikey33]

Thank you all for the responses. You are definitely helping me ease on the anxiety end of things/putting things into perspective. It is just so weird that these things could potentially happen because of muscles and nerves. One thing I did learn from my back injury, though, is that you can lose control and feeling in the legs and feet all because of something going on ABOVE your waist line. God, our creator, whatever, did some crazy but amazing things to our body's set-up.

The scariest thing of this all is the urinary symptoms. My stream has gotten very weak and it burns coming out for sure, especially in the morning. I am convinced, though, it is muscular. Also, as someone mentioned on another post, if this was truly infectious, then the burning in my crotch and urethra would be consistent. It would not wax and wane the way my symptoms are....

Also, two days before all this started, I pulled (maybe partially tore) a lower ab muscle (about 2 inches down and to the right of my waist line) doing lying leg lifts. This wasn't the first time it happened, but it felt like the worst. 2 days later, boom pain in my testicle and 4 days later, boom again, the fire/spasms were off.....

[extreme3]

Hi there and welcome to the board.
Anxiety is the number one antagonist of this condition. Your first order of business should be to quell the anxiety and you've made the wise first step by coming here as soon as possible.
When this thing first hit me, I become incredibly anxious with the pain being so bad. And on top of that, going to the doctors only to be disappointed by getting no improvement from them made it even worse.
Combating this thing is like gradually peeling back layers of the onion. It won't disappear overnight and it takes a lot of time and effort to see results. In the end, you will learn more about the way your body works than you could have ever thought possible. Be patient and digest the other experiences on this board.

You are not going to die even though you may feel like you want to. You will get better.

[mikey33]

Thanks, extreme, I truly appreciate the feedback from you, and the others!

One last question; is it "normal" or part of chronic prostatitis / chronic pelvic pain syndrome to experience the weird feeling of urgency? For example, I am usually okay during the day, but when I wake up at say 3 or 4 AM, I have this "tingling" in my penis that is telling me to go to the bathroom. I go (not a ton comes out) and I lay back down. 15 minutes later, same thing except nothing else comes out. This goes on an on for like 3-4 hours. Outside of the burning urethra that is the most frustrating part of all of this.

[carld]

Welcome...

Read my starter list...You have almost identical symptoms that I had...

All I'm going say is this...You get better if you work at controlling your anxiety and learning to relax your muscles through the protocols listed here...

Read up and learn and get to a pelvic floor specialist and get into relaxation...It's not if you will recover it's when...You will have ups and downs, but you will get better.

[extreme3]

One last question; is it "normal" or part of chronic prostatitis / chronic pelvic pain syndrome to experience the weird feeling of urgency?

All I can comment on this is there is a lot of overlap in symptoms between sufferers but everyone is different. Depending on the location of your trigger points, a set of symptoms can vary wildly between people. For example, my urinary frequency is pretty normal except that I will get up one time per night to urinate - usually around the same time every night! I've also got mild neuropathic symptoms in the bottom of my feet when sitting that came about a year and a half after the pelvic pain (experienced by a subset of sufferers as well).

I am seeing a PT that has got me on a stretching regimen that has definitely helped me. I can live with urinating once per night and I can remove my shoes when sitting to handle the foot burn. I feel happy that I am at a point where I can at least function as normally as possible again. Do what you have to do to get the anxiety under control and let the healing begin...