Intro and my symptoms - help!

[jderouen]

I'm new to the forum, but I've had issues for over ten years. In 1997, doctors inserted a camera into my penis (oscopy?) but found nothing. I had it done again recently and, again, nothing. Once I tested positive for bacteria in my urine, but most of the time the tests come out fine. Urologists have time and time again told me that nothing is wrong, but obviously something is. If any of the below sounds familiar, I'd love to hear your thoughts:

Symptoms:

* Feels like urine is in tip of penis, but won’t quite come out
* Burns/feels hot when urinating
* Constantly feels like I have to urinate
* Constant “achy” feeling in penis
* Alleviates somewhat after urination, but only last a few minutes;
pain come back
* Urinate stream is often weak, starts herky-jerky
* Ejaculate is sometimes “watery” and sometimes greenish-yellowish
* Sometimes have trouble getting or maintaining erection
* Occasional cramping/tender feeling in pelvis/groin area, testicles
* Feels worse if pressure (cat sitting on me, for example) on stomach
* Because it always feels like I have to urinate, it’s difficult to
tell when I really have to
* Seems to be better in morning, worse as day progresses
* I'm a freelance writer, and thus sit at a desk all day. It seems worse when I sit for long periods of time and not as bad when I don't.
* Weather seems to affect this, especially pressure changes such as rain or snow.

Thanks!
Joe

[webslave]

Classic case. No more cystoscopies, is my advice (they just allow the uro to make more money from your insurance).

[Jay]

Hi Joe,

Welcome to the boards. Though we are laymen, I really must agree with Webslave here. Your case is about as textbook as it gets for this condition, especially if you worsen at all after ejaculation. I have several of your symptoms myself, and plenty of our other members could say the same. If you've had two unrevealing cystoscopies, then I really doubt that your issue is anatomical in origin.

The good news is, you have many more options today than you would've in 1997. I'd strongly advise you to read everything on ucpps.men, as well as browse through the forum postings. There is so much to learn!

As you have already had a good urological workup, I would feel comfortable in offering you some advice on further treatment. A great first move is to have a thorough evaluation by a physical therapist specializing in the pelvic floor. We have a list in the Therapists section of the forums, but there are others out there. If you're suffering from pelvic floor dysfunction, it can produce many of your problems and then some. I'm currently in treatment for this, myself.

It might work for you, or it might not. At least you won't have to undergo any more unnecessary procedures (or worse, surgeries) to find out!

I also work at a desk and would like to offer some thoughts on that. Firstly, get yourself a donut cushion, as it will help until you get things under control. If you can afford it, there are desks which can be adjusted very easily to sitting or standing positions, which may be very helpful depending upon how you feel that day. My therapist has told me to keep my desk job, but to leave the chair periodically to simply squat and release my pelvic floor. This ensures that things down there don't stay compacted all day. It has definitely helped since I began to do this, as well as a set of specialized stretches 2 times daily.

[scotsman]

Yep - sounds like a classic case. Start here: https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition.

[elitynski]

Welcome - sorry this has been an ongoing issue for the last several year, but hopefully you can find some camaraderie and helpful advice on the forum. Many of the guys are very knowledgeable and you may find that by making some lifestyle changes in terms of diet, exercises, rest, anxiety management, possibly supplements, maybe PT, etc. you would be surprised how things may actually improve.

We also have great moderators.

Good luck and keep us posted.

[jderouen]

Thank you! All these years of not knowing what was going on and being told by doctors that they could find nothing had been frustrating, to say the least.

One thing I forgot to mention is that I have had bad allergy and sinus issues all my life, and something when they're particularly bad and then start to get better and everything starts to drain... the urinary issues and pain and such start to begin. Almost every doctor I've told that to has ignored me or looked at me like I was nuts, but there you have it.

I am already starting to read the other messages in the forum and peruse the website. Maybe there is hope yet.

Joe

[pbecvarova]

Hi J,

I share the cramping and aching feeling, especially in the testicles. This has been a new development for me near the 1-year point of the ordeal. This board is full of great information. Like webslave, I'm not a proponent of the cystoscopies either. Urologists are surgeons who just want to make a buck and for a lot of surgeons we're not a patient who represents a good return on investment.

I've completed 6 PT appointments and am encouraged that I've found a little relief. That is, I'm not experiencing the fatigue and pain in my buttocks so much any more. However, I have developed that cramping and fullness feeling in my testicles in the past month so who knows? Bottom line is that sharing your experience here is helping everyone and I, for one, appreciate it. Also key is updating your experience and progression through treatment. For example, if I complete 6 months of PT and don't really find any merit I'll report to the group. Of course the same can be said about getting results.

There is comfort in numbers and this forum is full of really solid guys who are doing their part to find a solution. In some ways just joining this site has been the best part of my treatment so far!

Anyway, welcome and thanks for posting!

[jderouen]

Are any of the rest of you overweight? I have been all my life, to a greater or lesser degree. I lost a bunch of weight and hardly had any symptoms, gained about half of it back and the symptoms came back in full force. So it pretty much has to be connected, doesn't it?

[Jay]

Are any of the rest of you overweight? I have been all my life, to a greater or lesser degree. I lost a bunch of weight and hardly had any symptoms, gained about half of it back and the symptoms came back in full force. So it pretty much has to be connected, doesn't it?

I can only offer my thoughts from the perspective of pelvic floor dysfunction, which I have and understand more thoroughly, but weight certainly can be a factor!

Think of your pelvic floor muscles as a bowl or a hammock, which is actually a pretty accurate description of their shape. They cradle everything above them, and that's a lot of stuff. Add on unnecessary bulk and, in the case of someone whose pelvic floor is already dysfunctional, you end up applying additional stress. Bam, irritation!

Even if it's not a direct cause of heightened symptoms, I'd still encourage any CPPS'er to lose extra pounds where possible. Good eating habits are important for us. That's not to say that you can't indulge reasonably with the occasional soda or sweet treat, though. What's the point of getting better if there's no pleasure in life, after all? Moderation is key!

[elitynski]

When I first developed symptoms I was at about 395 lbs and I have since lost about 40 lbs.

I finally saw the chief of URology at Northwestern in Chicago who dxd me with Pelvic Floor Dysfunction and a top NeuroUrologist at Loyola Hospital.

Both of them gave me the same directive - lose weight. I have no guarantees it will cure me - but based on what you said and what they saw I can believe the weight was instrumental in my case.

Keep working on getting healthy - I abused my body by overeating and emotional eating due to the need to form some self-protection due to childhood abuse issues. However, I am now dealing with those hurts to heal and become an emotionally healthy adult man.

You've inspired me tonight!

[scotsman]

I was 301 lbs (6'4"), then lost 105 lbs (I'm now 196 lbs) and towards the end of that weight loss I developed CPPS. So for me being overweight or weight gain wasn't a factor. I think the weight loss and starting chronic prostatitis / chronic pelvic pain syndrome was just a coincidence.

Richard.

[superuse]

What did you do to lose the weight besides (if any) diet modification? Weight by itself is not an issue (or these boards would be thousands of times the size they are). If you are a heavy sitter, meeting my profile at the bottom and begin a program of biking, (worst) weightlifting, running (elliptical, etc) to lose weight that would be a trigger. Regular weight folks (many actually exercise freaks) outnumber the overweight.

The heaviest risk factor by far for men (and perhaps women) is a sit down job (usually IT) along with an amateur or semi pro relationship with a bike, weights, or running. Karate, hockey, tennis, racquetball or other sports that heavily stress the groin. Many win a quinella or trifecta with biking, weights or tennis or some combination.

Sinusitis and allergy seem to be very common on the board. If you partially pinch your nose off and try harder to breathe through it you can feel the additional strain on the abs where they meet your pelvis as well as around the pelvic floor. If you close your nose off entirely and breathe through your mouth you can feel a difference in your pelvic girdle and floor (if you are looking for it). Whether its this aspect that helps irritate the musculature down there along with other factors or something else related to allergy and immune system function I don't know.

--jjf

[elitynski]

Superuse - I agree with you - however, I think that Weight can play a factor in PFD and LUTS issues. I don't think that everyone who is overweight gets PFD but the right combination of stress, weight, anxiety, etc. could certainly trip the trigger.

I think like Web said on another board - don't go looking for the cause, but look for the solution. In my case, weight may have contributed and regardless, getting the weight off will be better for me in the long run.

Day by day.

[graeme]

The cause I believe for many is unavoidable - its in your genes (a genetic fault). Otherwise why doesn't everyone who gets stressed out or sits a lot, weight lifts etc get this condition. I know some real stress heads but none of them have chronic prostatitis / chronic pelvic pain syndrome

However it's caused, it looks like the treatment for all is the same up to now.

[superuse]

If weight is a factor at all I would assume it is from the pressure put on the sit bones and perineum, in addition to the posture. One would expect that someone carrying more weight in the chest and up top, with a smaller bottom and thinner legs would have the most pounds/inch on the ol bottom with less padding to boot. Hard to say though.

Not everyone who sits a lot OR gets stressed OR bikes, runs etc. It is AND. Generally one may have to outlet stress in a pelvic tensing manner, the sitting usually would be one's source of a living (usually 50+hrs/week) and add the exercise factor. Sexual load is heavily there too. Usually an advanced degree and/or IT person. Last (or last last) straw could be a firing, death of a loved one, graduation,new job, marriage etc... the usual in most stressful life events lists) I seems anxiety disorders prevail significantly more than in the general population. Rectal surgery seems to be there in a minority that is significant as a additional factor or trigger .

There is sitting and there is sitting. Taking orders for $20 trinkets on the phone or filling out the same (rarely changing) forms paying $10/hr or more is not usually the issue. Less stress in a job you can do in your sleep after a little while. Worst that happens is someone in Ohio doesn't get his trinket. A form is refilled, or a $10 job is replaceable.

An accountant, lawyer, IT person, writer, hit with a different prob and new tech all the time, hours of stressful concentration and thought staring at the monitor, the fine print or spreadsheet detailing millions of $$, the new software rollout for 100's of employees, countless fires to put out and diagnose. Mistakes affecting careers and of course self worth wrapped up in it, your stepfather saying you'll never amount to anything (or god knows what else from whoever) Also deadlines and such. Tons more responsibility than the former. I remember when I was in IT heavily waiting for the machine to compile thinking "cmon, cmon", probably tensing my pelvis and legs as if one could squeeze the chair and say giddyap horsey!

Whether another factor is genetics (physical structure not anxiety and such) has been questioned as an issue. How close some nerves run next to another and what muscles they pass and how. The most questioned seems to be where the pudendal and perineal nerve run in relation to the piriformis, obturators and the sacrotuberous and sacrospinous ligaments. Possibly how far apart both sit bones (tuberosities) are, etc. Adrenalin , cortosol and the HPA axis have been mentioned also. However these issues would need several of the above lifestyle factors in addition for the majority of cases it would seem.