I do not think any of your theories are flawed. I think it's great that you are approaching this with an open mind and multifaceted plan of attack. I have done much reading in the past about biofilms and they are interesting to say the least, but I am still very weary of attributing many of these cases to that. As for residual inflammation this is HIGHLY probable in my opinion. In fact, one of the three urologists that I had seen during my time dealing with this, had suggested this exact idea. Inflammation can last for a very long time as it is the body's way of healing.

Reading your symptoms, I can't help but think of Varicocele symptoms. I do not know if you are aware of what varicoceles are, but in a nutshell they are varicose veins in the scrotum due to a malfunction of the valves inside the vein that prevent backflow of blood. They can range from small to large and non-painful to extremely painful. They are very common. I myself have one on the left side and it aches from time to time with heavy exercise. They are most definitely palpable as well. Hypothetically, this could be mistaken for a palpable mass elsewhere in the scrotum. Perhaps ask your doctor about this?

As far as ejaculation volume, as well as the consistency and color of your semen, many things could effect this, most often the frequency at which you are ejaculating. The white blood cell count is very interesting, but COULD also be indicating non-infectious inflammation if I am not mistaken. The smelly urine is hard to judge, as many things that one ingests can change the smell of the urine. I can attest to this personally, as coffee and other things regularly make my urine smell differently. The lumpy and yellow ejaculate I remember having as well for quite some time, but this resolved itself over time. I honestly cannot account for what may be causing that.

What I realized a long time after this was all said and done, was that many of these things that we decipher as symptoms may not be as uncommon as we think they are. What happens is that once we get into the mode of piecing everything together and trying to account for what may be causing our situations, we begin to look at things very differently. Things that may actually have been normal prior to the beginning of this whole thing, we may just never have taken notice to before because it wasn't important, and we now think it is problematic. The smelly urine is a prime example of this. I too at one point thought for sure that this meant I had some type of infection, but now realize that is not the case. Another example I can provide to you from my own personal experience is the frequency of urination. When I began thinking about how many times I was urinating everyday, I was urinating far more frequently. I completely tweaked my perception of the need to use the bathroom and began to actually decrease my bladder capacity on a completely mental level, if that makes any sense. Once I stopped thinking about it (along with gradual resolution of other symptoms as well of course), I was going longer and longer periods of time without urinating.

I hope you don't take my words as disrespect, or feel like I am trying to tell you that you are wrong and imagining things. I am just trying to point out that the mind can play some pretty nasty tricks on the body. You would be surprised at how much differently and correctly your body will function when you distance yourself from thoughts of how "wrong" it is functioning.

If you are looking to go the natural route as far as antimicrobial treatment, definitely give Allimax or Allicinmax a shot. I had taken a few boxes of the stuff. I am not ver into natural medicine (ironic that I am on this forum I know), but Allicin has proven to be a very successful option for treating hard to beat pathogens including MRSA. There were a few videos I had watched a while back where they would actually apply it to the infectious wounds of people with MRSA completely resistant to even the most powerful antimicrobial drugs and it completely cured them.



One last thing I'd like to say is that it is awesome that you are staying positive and approaching this the way that you are. I understand the frustration with doctors, as I had been to so many myself. 2 GP's, 3 Uro's, 1 Infectious Disease Dr, and a hospital visit later, the only thing I was able to obtain from them was adequate testing to prove that I did not have an infection and it was time to move on to other options. Although I was frustrated with them at the time because they could not "fix" me, I now realize that their ability to at least rule out one possibility, allowed me to find the proper path that I needed to take.

Keep up the good work man and let me know if there is anything else I can give my two cents on. This stuff is rather interesting and I am glad to help as I have been through this hell myself and would love to provide my knowledge in any way to save others at least some of the pain and suffering that I went through to figure this all out.

-Sparky

Hi Sparky,

There's plenty more I'd like you're two cents on! Some more questions for you:

- Can you tell me why you are weary of attributing many cases to biofilms? My gut instinct is also to be weary about this theory, but can't find enough evidence to support that. Do you have any research or reasoning you can point me to? I want to find a lab that can test for biofilms to prove/disprove this for my case (I know of 3 methods in use where they grow biofilm on pegs but none of them a mainstream and certainly not in the country I live in right now)
- Agree high WBC can be either infection or inflammation, but if it is inflammation it should reduce over time. My counts seem to be marginally reducing over time, but there are a few outliers and I do not have enough samples to know. I should know within a couple of months however.
- Do you not think that your lumpy/yellow ejaculate that resolved over time was due to the body healing an infection that was causing your symptoms?

FYI I do have a (small) varicocele in my left teste that shows on ultrasound but this is not a pain-point so can count this out - the swelling and pain points are on the epididymis tail that is attached to the teste, and the vans deferens that leads from the tail up the back of the teste.

Definitely adding Allicin to the overall treatment plan. How did your experience with that go? Wondering if it coincided with a reduction in symptoms at all?

Great discussion and helpful in so many ways, hopefully more can join in and we can jointly work on finding answers where the established medical community CANNOT.

Sparky, can you share your method of treatment that saw you cured?
- what exact methods did you employ?
- how long until symptoms improved? How long until you were fully cured?
- assuming it was more than 1 method, which methods do you consider most important and which were the fastest/best working ones?

Would be much appreciated...

FYI I've just had a bad flare up today after 5 straight days of real and noticable improvement (best ive ever had since it started). Can't say why..

My weariness about biofilms in this situation is simply that I do not think these cases are that complicated. I also do not think that biofilms would prevent you from coming up positive on some sort of testing, whether it be semen culture or whatever, if you were to be tested during a flare up. I think that you should really pay attention to the cycle at which your body is going through this. Testing for actual biofilm may not be necessary at this point, but rather, wait to see when you have a flare, and then get tested as soon as you flare up, if possible. Essentially that is how bacteria in biofilms work if I am remembering correctly. It has been a very long time since I have done any research on them so I could be mistaken. From what I remember, the biofilm will in fact break apart allowing the spread of more bacteria in order to increase the overall size of said biofilm or begin the development of a new biofilm. This, if you did indeed have an infection, would be the cause of the flare up most likely. So my suggestion is to get a semen culture done as soon as you notice a flare up.

The fact that your WBC counts are decreasing is a good sign if you ask me. This could most definitely be inflammation reducing over time. The thing about healing is that it takes time. Something involving nerves takes even more time. In my case, which I believe to have very much involved the pudendal nerve being irritated/injured, it took months and months to heal. But it did happen. The problem is that I cannot specifically tell you how long until symptoms improved or how long it took, because like I said earlier, as you improve more and more, you begin to think about this less and less. The less you are thinking about it, the less you make note of specifics and store things in your memory. I can tell you that my overall time lapse with this whole thing was probably about a year to a year and a half, but the latter portion of this period was when I saw drastic improvements because it took me many months to get on the right track.

Fully cured is a term that I am hesitant to use. Like I've said before, the idea of a full cure is individual to each and every one of us. It's mainly based on how close you come to your expectations and how satisfied you are with where you currently stand. It's interesting really because I never really noticed this until you had asked, but I do occasionally get some minor, minor twinges. I noticed mostly that after defecation I will get a verrrrry minute amount of discomfort in the urethra/bladder. I am almost 100% positive this is just some type of muscular/nerve stimulation that is due to the passing of stool and it passes within about 10-15 minutes. This is the problem with the groin/pelvic/genital region. Everything sits so close together and is so intertwined that a problem with one small thing can effect so many other things. This is why I stress so much to really try to look at other possibilities besides infection. In all honesty, a strained obturator internus or levator ani muscle could in fact produce symptoms anywhere along the line of the pudendal nerve, including the bladder, scrotum, penis, etc. Nerves are fascinating and havoc wreaking at the same time because they can make it very hard to pinpoint the origin of pain sometimes, as it could display itself at any given point along the nerve pathway. But to answer your question, I consider myself completely cured as I am satisfied with this. A tiny bit of discomfort one or two times a day that lasts for 10 minutes is nothing in my eyes compared to where I used to be.

My use of allicin was fine. I didn't notice much on it, but I also think this was due to the fact that I really never was diagnosed with any infection. I can vouch for it though as I have experimented with it during times when I had a cold or sinus infection and just didn't feel like going to the doctor, and it actually seemed to help quite a bit. I still have a box left and will keep it handy. It can be somewhat pricey, but there are many sites that have some pretty good deals from what I can remember.

The semen situation I really do not think was due to infection in my case. Like I said, so many factors can affect the composition of your semen. Yellowish color can be normal for some men. In fact, semen is not really truly white in color, and is rather an off-white color normally. This goes back to the idea of noticing things that you never took notice of prior to the onset of this situation. Did you ever regularly look at your semen and examine its color? Because I didn't. Also, be careful as to what you are examining it on. For example, if you were to collect some semen on a white napkin, it is going to look a lot more yellow than if it were collected in a clear cup. Out of curiosity, how yellow are we talking in your case?

I know it is probable that you may have an infection in your epididymis, as I do not ever completely doubt any possibility, but it's also very hard to imagine that an infection has been living in the same spot for such a long period of time even after prolonged antibiotic courses. The problem many face with prostate infections is its poor blood supply, making it very difficult for adequate amounts of antibiotics to reach the necessary areas. This shouldn't be the case with the epididymis. Anything in the scrotum area receives plenty of blood, as the testes are very vital organs and need this to survive. Just some food for thought.

Some methods I suggest trying is some stretching, warm baths, walking, etc. The stretches I would say should focus on hip mobility and loosening up muscles of the glute area as well as the groin area. Try to do some self massage on these muscles as well. I also used to find a lot of relief when I would go for a long walk or jog. This really gets everything working in the area, both increasing bloodflow and loosening/lengthening constricted muscles.

I will try to think about some other stuff but this is all I can really remember for now. Any other questions just let me know.

-Sparky

Sparky!

thank you so much for coming back and sharing your success! Indeed, I have much I want tot write in response to your posts but i have to run...another time...

I believe that regardless of infection or NOT, we must incorporate pelvis therapy if our issues persist long term

It breaks my heart - infuriates me - saddens me - that tonnes of men are walking around unable to ejaculate, get erect, and feel like their prostate is infected when indeed - it is a MUSCLE / NERVE issue.....how do more people not know about this....?

wanna know a great test? Take a hot shower and tray to relax your muscles completely - relax all pelvic muscles to the point where if you have to pee or # 2 you will just let it happen......at this point this is the only way my muscles down there truly completely relax....I always found it strange why I peed about 3-5 times every time I showered..muscles were too tight.......

think about it: babies have so much force to their urine...why don't we? Because muscles are constantly tense.

smelly urine sounds like you need a diet high in veggies, garlic, onions, etc and no junk food, wheat, sugar for a while

In twp months of doing the pelvis stretches and changing my diet I feel 80% better - ejaculations are huge and I can ejaculate several times a day and they feel so good!!

QUESTION - what is the muscle that makes your penis move up and down when erect? when I get an erection, this muscle seems to still want to spasm and cramp up - it is very hard to relax it.......

THANK YOU SPARKY and ant-quack listen to this guy - I guarantee it is part of your solution!!

AND yes SPARKY's regime is specific to epi as well - think about it severing spermatic nerve cord (surgery) takes all the pain away.....my epi is feelign so much better !!!!!!

A WHOLE approach is imperative!!

Good to hear you have found some relief, man. As far as erections go, there are a number of muscles in that region that contract to maintain the filling of the penis with blood. The ones you most likely feel in the perineum are the bulbospongiosus and the ischiocavernosus muscles which attach to the base of the penis. If I remember correctly, at my major turning point, I began to have some involuntary muscles spasms in these muscles. This wasn't painful, but rather felt similar to if you have ever had your eye twitch, or perhaps a muscle in your arm or back. From what I understand, muscles can tend to twitch in such a way due to fatigue/overuse/cramping, so it makes a lot of sense that if these muscles are tense they would be doing this. It was a welcomed feeling by all means. It made me realize that things were happening down there. Relaxation is key. Try taking hot baths for 15 minutes once a day and stretching and you should definitely see some improvement. Also, if you are cramping still, ejaculating multiple times a day may be a bit too much. Try to lower the frequency a little, if not abstain for a while, as these muscles may need time to relax and heal. Last thing you want to do is really cramp them out again now that you've come such a long way.

-Sparky

Sparky!

thank you so much for re-joining us very considerate of you

what do you think about my idea of a prostate catastrophe cycle:

Prostate Catastrophe Cycle

1. You get an infection / unidentified pain (but liekly not serious / OR tension (perhaps caused by anxiety)
2. Because your genitals DEFINE man and his virility � his dominance � his capacity to re-produce, please woman ect. Well we naturally Panic far more than if we hurt our knee or got strep though: literally we think the worst: divorce, castration, no sex life etc etc
3. this panic causes us to tense up even more and we become hyper focused on the pain down there
4. this tension and pain focus actually cause more pain / worry / tension which may lowers immune system / Cause even more mysofacial issues
5. the more pain we have / lower immune system then the more we worry which cause additional tension, issues with urination and ejaculation, more trigger points and maybe even more infections

And then the cycle spirals out of control

I think this was my issue!

How come urologists brush us off? why do they not treat our issue as a whole body issue?

THANK YOU SPARKY!!!

No problem I am glad to help in any way I can. Your concept of the cycle is pretty accurate in my opinion. I always looked at it in a similar way. What I think happens is that we continuously dig ourselves deeper into the hole with each and every flare. This is especially true because of the onset of some hope when symptoms subside temporarily, but then surface again shortly only to destroy this hope. What needs to be understood, and only now can I say this as I have recovered from this, is that flare-ups are not always a negative thing. Inflammation is the body's way of healing, so it is in fact necessary for recovery. What I also like to propose is that although there are different types of muscle tissues in the body, for the most part, they react similarly to stimuli. In other words, although the muscles of the pelvic region may function differently than your biceps, once they suffer an injury or strain (in this case chronic strain or overuse), they too require the same methods of recovery that your biceps would. Basically, you would not go to the gym and work out your biceps every single day for weeks and weeks on end. The body NEEDS rest. This also brings up the point of sleeping well. Do make sure you are getting enough sleep, as lack of sleep can cause a whole slew of problems even beyond this situation.

As for the urologists, I think this is a very complex situation, and one that is VERY difficult to be reasonable about when you are frustrated and in pain. One must understand that not all people are the same, and everyone has their own personality/morals. Certain doctors are caring individuals by nature, and this carries over into their profession. Others aren't, and lack this quality. I have dealt with both during my time dealing with this. Fortunately, there are many good doctors out there. The problem with the urologists is not so much that they are brushing you off, although it may seem like this, but rather that they are specialists. They are taught to treat things in specific ways. Some doctors are innovators and develop new ways of treatments, surgeries, etc. But these guys are rare. Many doctors perform their jobs according to the guidelines that they were taught. It's similar to a mechanic, who is taught to fix a motor a specific way, and will do so for the majority of his career. But like I said, urologists are specialists, and many times are not trained to deal with some type of mystery pain like this. They are taught to deal with clear cut issues such as low sperm counts, actual bladder infections, bladder/prostate cancers, etc. Most do not specialize or possess much knowledge of how the muscles affect this problem we have. But this is becoming more and more prevalent and many doctors are learning about it. I saw a urologist that was recommended by my PT. This doctor was very knowledgeable in the muscular aspect, and was able to pretty much confirm my self-diagnosis of it being muscular, as well as use his traditional practices of urology to rule out other things such as infections and interstitial cystitis.

Plain and simple, you MUST break the cycle. Once you do this, I think many doors will open in your favor as far as recovery.

-Sparky

Thank you Sparky!

you should develop a web-site...I do not want for one second to suggest you are in this for the money BUT you have so much to share with so many sufferers and you have suffered alot and paid alot $$$

I would gladly pay $20 or way more for your E book

and you would be helping so many people!

Thank you for coming back - your knowledge of this subject is profound and I really respect you for being so objective when it comes to urologists.

again thank you!!

Although an interesting idea, and one that would probably be a very effective money maker, I have no interest in doing that. I fell victim to a lot of heartless people when I was going through this, as well as lost a lot of hard earned money as well as spent a long time suffering. The least I could do is participate in some discussion on this board and try to pass along some of the information I have compiled throughout my case.

As far as being objective towards urologists, I will admit that this was learned. I too was very frustrated with them at one point, and had no faith in them. When you feel helpless, it is very hard to understand a lot of things, especially the means/limits to which one can perform their job. On the other hand, some of them are very incompetent individuals, and you must remember that just like anything else, there was a bottom half of all medical/urology school classes. One urologist actually had me diagnosed with and convinced that I had an incurable bladder disease called Interstitial Cystitis, and even caused me a lot of pain through testing (cystoscopy) and weekly treatments (medicine in bladder through a catheter). Thankfully, my frustration and anger allowed me to become short tempered with this, and move on to another doctor who later had confirmed that I did not have this at all whatsoever. I am not trying to talk bad about doctors in any way, as I have nowhere near the education and knowledge that they do, but you must understand that not everyone is perfect at performing their jobs. Unfortunately, this is highly problematic for the patient in the medical world.

Have you given the hot baths a try yet? Keep us updated.

-Sparky

Hi Sow&Reap,

I am wondering, with your new regime that appears to be working, do you also notice a significant decrease in your epi swelling?

I have just had 5 out of 7 near-pain free days on the regime I am on. Which is amazing for me. But I notice that my epi swelling is not reducing. It is as swollen as it ever was.

Normally I would associate a reduction in pain with a reduction in swelling, but no so in this case. Just wondering if you have anything similar?

Thanks

Hi AQ:

how do you know you do not have reduction in swelling? do you receive regular ultrasounds?

I am in the 'Canada' Conundrum - we do not pay for our medical care BUT this also means I cannot walk in off the street at any given point and pay for an ultrasound....

Are specific tissues or organs especially vulnerable to the effects of inflammation?
Tissue damage that occurs during the inflammatory response must be actively repaired. Repair capabilities of the tissues within the body vary greatly because the cells have different regenerative abilities. For instance, cells with little to no regenerative capacity include neurons, cardiac cells, and skeletal muscle cells. Tissues comprised of these cells would be especially vulnerable to effects of inflammation. In contrast, skin cells are labile because they continue to proliferate throughout life; thus, wounds to the skin are often easily healed.


I have read that inflammation of the epi can take a long time to be decrease - even long after the pain associated with it subsides. I have also read that EPI inflammation is especially slow to go away.....


Chronic Inflammation
If the stimulus persists, inflammation can last days, months, and even years. Chronic inflammation is primarily mediated by monocytes and long-lived macrophages; monocytes mature into macrophages once they leave the bloodstream and enter tissues. Macrophages engulf and digest microorganisms, foreign invaders, and senescent cells. Macrophages release several different chemical mediators, including IL-1, TNF-alpha, and prostaglandins, that perpetuate the pro-inflammatory response. At later stages, other cells, including lymphocytes, invade the affected tissues: T lymphocytes kill virus-infected cells and B lymphocytes produce antibodies that specifically target the invading microorganisms for destruction.
Macrophages and other leukocytes release ROS and proteases that destroy the source of inflammation; however, damage to the body's own tissues often results. In fact, tissue damage is a hallmark of chronic inflammation. Another characteristic of chronic inflammation is repair of the damaged tissue by replacement with cells of the same type or with fibrous connective tissue. An important part of the inflammatory process involves local angiogenesis�the development of new blood vessels. In some instances, the body is unable to repair tissue damage, and the inflammatory cascade continues. Chronic inflammation is abnormal and does not benefit the body; in fact, chronic inflammation is involved in a number of disease states (see below).




BUT if you are experiencing a reduction in pain and symptoms you are clearly on the right path....I will not receive another ultrasound for 6 months (doc says this is reasonable) so I do not know.....


But i do know - as crazy as this sounds - that my epi may be very inflammed BUT i am not so concerned as I have a 80-90% reduction in pain / discomofrt funny feeling and 60-80% increase in sexual function (larger clearer ejacualtions, more enjoyable ejaculations...)


PLEASE keep us posted - I really would like to know your regime whether it worked perfectly or only a little bit - because we have to all work collaboratively - we need a meta analysis of sorts


I am so glad to hear you are experiencing relief - remember flare ups are part of the healing process so do not panic...have you researched bio films? I am not so sure if bio films relate more to prostate or epi -



thanks

Sow and Antiquack,

I think now that you are in a period of relief, this would be a great time to try and distance yourself from the whole situation as much as possible. I remember that during times of relief, I would constantly be fearing the next flare-up, and now realize that this may have kept me inside the cycle. Once I began to go back to parts of my normal life more and more, I began to have a lot less flare-ups, until weeks/months had gone by and I had realized I had been pain free for longer than I could remember.

I am not saying that this is 100% mental, but if no infection has been found, you would be SHOCKED at just how much of this we actually bring on our own selves through obsessing and constantly thinking about the symptoms.

Perhaps try to find a new hobby, go out with some friends, maybe even have a few beers and relax if that's what you're into. I know that many people swear by the fact that you aren't supposed to have any alcohol, coffee, acidic drinks while dealing with this, but I never completely followed this, and had coffee every day, and regularly drank beer on the weekends with friends. In fact, doing these two things and not suffering any consequences (such as worsening a flare-up) actually helped me in my conclusion that it was neither my prostate nor my bladder that was the problem. In all honesty, a few beers would actually provide me with immense relief, most likely do to the depressant effects of the alcohol helping me to relax my muscles.

Just some food for thought.

-Sparky

S&R,

Perhaps our cases are somewhat different as swelling of my epi is clear visually as well as to the touch. Ultrasound I suppose could measure to the millimeter but honestly unless there is a significant reduction I wouldnt really bother with it (I have had 2 ultrasounds so far)

Yes, this is what I fear. Also what you wrote on chronic inflammation makes sense. Very possible even if there is no infection remaining that chronic inflammation can screw things up..

I will report back with new results from this week (including whether the lab broke down WBC types to support infection or inflammation). If I get another good couple of weeks like I did last week, I will start getting confident that my treatment plan is working and post the details on it.

Thanks S&R and Sparky for continuing discussion. I suppose every case is different and it's hard to be prescriptive about a solution but all of the input and ideas help.

Not that this would be a surprise guys, but thought i'd share anyway..

I got roped into a heavy drinking session last night. Actually to be honest I also wanted to see what effect it would have on symptoms. I haven't really drunk hard for about 4 months. FWIW it was all vodka soda, no beer or mixing.

Well kinda as expected my pain scale has gone from an average of about 1/10 this week to 8-9/10 today.

So, drinking is a definite no-no for me. Adding it to the list and back to the grind!