Anyone have Epididymitis Cause Chronic Prostatitis?

[mleach350]

Hi All,
I have just joined this board after being diagnosed with Chronic Prostatitis yesterday. I am 27 years old and am in good shape, my only previous health problem is explained below. It was a bit shocking to be perfectly fine two months ago, and then to hear yesterday that I may not be 100% ever again and that my Urologist will try to manage my symptoms as best he can. I think it will take some time to truly grasp that idea although part of me feels like I need to reject it and continue to fight to get back to 100% one day.

I hope this post isn't too long but I wanted to give some background and maybe get some thoughts or encouragement if anybody else has experienced anything similar. I guess it starts in 2003, I was 23 years old and got nonbacterial epididymitis. I was cycling a lot at the time and don't know if that was a cause or not. I was tested extensively, did a month of levaquin and told I was fine. The swelling and pain persisted for over a year but eventually burned out. I always new I was at risk for a relapse but had not thought about it in a long time.

In June of 2008 I felt the epididymitis pain again, which is a burning hot feeling on back of right testicle that radiates into abdomen and leg. Dr. diagnosed me with epididymitis, I went of Bactrim for 2 weeks, no improvement, had an ultrasound and urinalysis that came out fine, switched to Cipro for a month, no improvement, then doxycycline for a week after pain spread to left testicle also. During this whole time, I had burning urinations, and a tender abdomen which I hadn't had with my previous epidydymitis. I also got very depressed and tended to dwell on the problem during this time. During the next week I began to feel a swollen feeling in my rectum, like something was in there. The next day I really had the hot golf ball feeling for the first time, I was wiped out with a fever and could barely get off the couch I was so weak. Everything I read seemed like this was an acute bacterial infection except my urinalysis was clean. I was weak, I had a fever, my body had no color, and I had no appetite but my Urologist insisted it was non-bacterial due to the urinalysis and it had to be an unrelated condition. I was being sent home from work early because I looked so ill and was so weak. My Urologist had put me on Levaquin and Celebrex for a month and told me to avoid the usual food triggers which I have done. After a month of Levaquin and Celebrex as well as avoiding caffeine, alcohol, and spicy foods I have seen slight improvement in some symptoms and worsening for others. My urologist says I would have improved more by now if the Levaquin was working so he stopped that and put me on Uroxatrol. We'll see what that does. At this point the epidydymitis still comes and goes and is a very intense pain when it does but on average is much better. The urinary symptoms have improved, I never had problems with frequent urination or anything like that, just a burning sensation and desire to go often. Really the biggest discomfort is the fullness, burning feeling in my rectum. It feels like I am sitting on a baseball lately and is continuing to get worse. The fevers have subsided and my energy is better as long as I don't get depressed. I do have an office job with a lot of sitting but I have a chair that is padded and is very reclined and I just ordered a padded seat from the Amazon store last night. I know I am not as severe as many people here, I can do everything I want to in life, it's just now everything is done in this context of constant pain and illness.

My questions are:

1. My urologist acts like it is entirely common for epidydymitis to spread the infection or inflammation to the prostate and cause prostatitis or vice versa but I haven't read of anyone else that has experienced this. Has anyone had both of these problems before at the same time? I am not a Dr. but if something is spreading through my entire reproductive system I feel like bacteria must be involved. My Dr. says that's not always the case and can just be inflammation spreading which may be the case.

2. Does anyone else have the golf ball feeling and if so have they found anything that helps it? Does any accredited quercetin product help the swollen feeling for anyone, I have thinking about starting that even though my Urologist is skeptical about such products.

3. Has anyone else had extended fevers and chills from chronic prostatitis? I had them for about the first three weeks I felt prostate pain. I was wearing sweatshirts outside in July I was so cold and weak but again my urologist said it is not related to prostatitis which I find hard to believe due to both the pain and the fevers starting the same day.

4. Since this doesn't seem like a muscular thing to me, is anyone a candidate to improve from physical therapy or no? I don't really have pain other than the golf ball feeling. Is that just a swollen prostate or is it nerves? Or maybe it is always a muscular thing. Who knows. I know cycling can be a trigger for many, but has anyone returned back to recreational riding? I hate the though of not being able to ride a bike with my children some day. I could go on all day but that's enough for now. It's good to vent a little and speak to others in the same boat.

Thanks in advance for any and all help.

- Mark

[webslave]

... entirely common for epidydymitis to spread the inflammation to the prostate and cause prostatitis or vice versa ...

Yes, very possible. Due to the vagaries of nerves, the pain and inflammation can indeed move around.

Does any accredited quercetin product help the swollen feeling for anyone

It certainly does. Get your free bottle.

Has anyone else had extended fevers and chills from chronic prostatitis?

Once your immune system is "goosed", for example by prolonged stress, you can end up with a stress-induced feverish reaction.

Suggest you read the forums here ... lots of priceless advice.

[Jay]

Hi there,

Welcome to the forums. Sorry that you have to be here, but glad that you found your way to us! I'm not a doctor, but I will try and answer your questions to the best of my ability, as a fellow patient ...

My questions are:

1. My urologist acts like it is entirely common for epidydymitis to spread the infection or inflammation to the prostate and cause prostatitis or vice versa but I haven't read of anyone else that has experienced this. Has anyone had both of these problems before at the same time? I am not a Dr. but if something is spreading through my entire reproductive system I feel like bacteria must be involved. My Dr. says that's not always the case and can just be inflammation spreading which may be the case.

Many of our members (myself included) have been diagnosed in the course of things with epididymitis. It's quite possible to go from that to CPPS; in some men, chronic prostatitis / chronic pelvic pain syndrome seems to have first been induced by the trauma of an infection.

The webmaster's past advice has been to read this page we have, and if it does not apply to you, to attempt physical therapy.

At the very least, your urologist was wise to not keep you on Levaquin for an age. He's right about it curing any infection by that time, and people who stay on that stuff tend to develop nasty side-effects. If I were you, I'd get the bacterial thoughts out of my head, particularly if all testing has turned out clean.

2. Does anyone else have the golf ball feeling and if so have they found anything that helps it? Does any accredited quercetin product help the swollen feeling for anyone, I have thinking about starting that even though my Urologist is skeptical about such products.

The golf ball feeling is VERY common among our sufferers. Do a board search and you'll turn up many results. This, by the way, is typically resolved by physical therapy for pelvic floor dysfunction. "Swollen" feelings are also common, and in my case, were caused by the levator ani muscle. As for Quercetin, I can't speak to it because I don't take it, but I know many of our members have with good results.

3. Has anyone else had extended fevers and chills from chronic prostatitis? I had them for about the first three weeks I felt prostate pain. I was wearing sweatshirts outside in July I was so cold and weak but again my urologist said it is not related to prostatitis which I find hard to believe due to both the pain and the fevers starting the same day.

If you had an actual fever at the start, it's possible that you might have had an infection at that time, or some other bodily response which triggered your CPPS. Again, search for "fever" on the boards. For what it's worth, fever-like symptoms and chills are also not uncommon. Actual, extended fevers may or may not be -- I'm not sure, but hopefully Webslave will jump in. (EDIT: Looks like he did in his answer above!)

4. Since this doesn't seem like a muscular thing to me, is anyone a candidate to improve from physical therapy or no? I don't really have pain other than the golf ball feeling. Is that just a swollen prostate or is it nerves? Or maybe it is always a muscular thing. Who knows. I know cycling can be a trigger for many, but has anyone returned back to recreational riding? I hate the though of not being able to ride a bike with my children some day. I could go on all day but that's enough for now. It's good to vent a little and speak to others in the same boat.

I can offer you no guarantees with regard to physical therapy. However, I will say that you'd be surprised at how bad dysfunctional muscles can make things feel down there. I have had crawling, burning (during urination and just in the area, i.e. posterior testicles), congestion, swelling, constipation, etc. I've even had sharp, nerve-like pains where my penis pretty much felt like it was gonna fall off. All of this was explained during physical therapy and we've even reproduced a good bit of it through muscular palpation.

We don't claim that the solution for chronic prostatitis / chronic pelvic pain syndrome is always muscular. It's a very complex problem. However, we do believe that the majority of men will benefit from it, and we pretty much always suggest that you give the book A Headache In The Pelvis a read. If possible, see a physical therapist specializing in these issues and have an evaluation. If it turns out that they find PFD, then great, you're on the right path. If not, you'll only be out the cost of one visit and will not have had any unnecessary procedures done to you in the process.

[mleach350]

Thanks for the quick and thoughtful responses. It's good to speak to other people out there in the same condition rather than my Urologist who lets me check in by phone for a few seconds, hears I'm not improving and then moves on to the next treatment.

I read the article you referred to about Symphysis Dysfunctions and I think I definately have epidydymitis rather than just testicular pain refering from somewhere else. I had, and continue to have pretty extensive swelling of the scrotum, very tender testicles, and can actually feel the enlarged epidydymis. Honestly when the epidydymitis hurts, it is a burning sensation that far outweighs the discomfort of the prostatitis. I have yet to find any information on accelerating the recovery from nonbacterial epidydymitis so I don't have pain for over a year like I did last time. Maybe there is nothing to do but wait for the nerves to calm down.

I guess it is not as uncommon as I thought to hear that epidydymitis could inflame the prostate and cause prostatitis. I had been reading research on other sites and other patient's stories and hadn't heard anyone else having epidydymitis at the time their prostatitis started. I do plan to research as much as I can in the forums and come up with a program that works for me. Honestly I am having a hard time with the no alcohol, not that I drank much before, but at my age I feel like an outcast not being able to have a beer at a bar or wine at a work dinner. This is something I will need to test to see if it affects me or not and weigh whether or not it is worth it. Of course sacrifices need to be made for your health. And I did order the free sample of Quercetin so I will see how that goes.

I am on day one of the uroxatral and am continuing celebrex and will start Quercetin. I guess I should give these some time to accumulate in my body and see if any improvement is made. Some conclusions (and correct me if I'm wrong) I have made from this website and some other research are:

1. Generally people improve over time thought even if it is marginal
2. There is no one treatment system that helps everyone
3. There are not enough Doctors and researchers working on this problem
4. You need to be your own advocate and push your Doctor to try different treatments or initiate them on your own within reason
5. Mental health is a large component of this and honestly something I have stuggled with. I was depressed for the first time in my life when I was diagnosed with this and now I am doing better but have become obsessive about this condition. I am constantly monitoring my conditions and talking to my wife about it endlessly which is not helping
6. People do get better because they say over 2 million men in America have this condition and I don't see huge numbers of people posting for help on the Internet. I assume the worst and most stubborn cases or people with certain mental make-ups are the ones on these sites looking for help. Maybe I'm wrong but there has to be Doctors out there successfully treating Prostatitis for patients.

[Jay]

Hi,

Glad to hear that you found some benefit in the replies you've received. Regarding your points ...

1. Generally people improve over time thought even if it is marginal

It has been the case for some people that this condition has entirely 'burnt out' over time. For others, it reduces to a lower level. The worst period seems to be the first year for a lot of guys.

2. There is no one treatment system that helps everyone

Probably true of this, and certainly true of many other medical conditions. We are big proponents of physical therapy on this board, and tend to be anti-surgery except for clearly indicated problems, but we don't claim this to be the solution for everyone.

3. There are not enough Doctors and researchers working on this problem

I would agree with this. We have two physicians who frequent our boards, Doctors Dimitrakov and Shoskes, who do a lot of work with CPPS-specific research. Dr. Anderson at Stanford University is also involved with the Stanford/Wise-Anderson Protocol, which combines physical therapy with psychology/relaxation. Unfortunately, they are in the minority among their peers.

4. You need to be your own advocate and push your Doctor to try different treatments or initiate them on your own within reason

Always wise to be your own advocate when it comes to your body. You must trust your physician's knowledge to some extent, naturally, but you have a right as a patient to ask questions and receive answers (even if the answer is 'I don't know'). The big horror stories we usually hear about are 1. people who have unnecessary surgeries, and 2. people who are on antibiotics for years when they have never cultured positive for anything.

5. Mental health is a large component of this and honestly something I have stuggled with. I was depressed for the first time in my life when I was diagnosed with this and now I am doing better but have become obsessive about this condition. I am constantly monitoring my conditions and talking to my wife about it endlessly which is not helping

A big problem for many of our members, myself included. Anxiety disorders are very common here. Read my prior postings and you'll see how bad I've been at points mentally. Chronic pain can be insidious in what it does to your emotional state, and that's something you have to stay on top of. Regardless of what's going on with you, that's the hand you've been dealt, and panicking/obsessing does nothing but harm you further. Anxiety is even known to induce chemical reactions which heighten pain, and that's why we are such big proponents of psychotherapy and relaxation.

6. People do get better because they say over 2 million men in America have this condition and I don't see huge numbers of people posting for help on the Internet. I assume the worst and most stubborn cases or people with certain mental make-ups are the ones on these sites looking for help. Maybe I'm wrong but there has to be Doctors out there successfully treating Prostatitis for patients.

People certainly do get better, and that's important to keep in mind. For some guys, it burns out. For others, it's just a matter of finding the solution. In reading through the boards, you'll notice many people have come and gone over the years. Read the Success Stories section, too.

Regarding your avoidance of alcohol ... You'll get over it. Unfortunately, this is a condition which requires lifestyle adjustments. If it makes you feel any better, I'm 23 and have never had a drop of booze in my life, even before CPPS. Allergies!

[mleach350]

Thanks Jay, I have read your other posts and emphathize with your situation. You have been a very welcoming ambassador to these boards. Honestly I hope to one day forget this website exists but in the meantime it is very comforting and useful to me. I do plan on exploring the physical therapy route if my current treatment does not help. I would like to start incorporating some stretches and relaxation into my day anyway.

[superuse]

I was cycling a lot at the time and don't know if that was a cause or not. I was tested extensively, did a

Read thru my posts. Look at my signature at the bottom. I didn't read your whole message but you probably didn't have abacterial anything. You have pelvic neuralgia or CPPS. Type in the search word "cycling" "cycle" "Bicycling" etc. and spend a month reading thru the hits. The member michael in boston may be prototypical to your situation. Didn't read through the following replys but they are probably right too.

[mleach350]

I have read some posts about cycling on here and I wouldn't say I was an obsessive rider or anything like that. When I got epidydymitis the first time I was riding 4 days a week, probably a half hour 3 nights a week and an hour on the weekend. While I'm sure that could have contributed to my epidydymitis, I don't think I had chronic prostatitis / chronic pelvic pain syndrome that time. I had my epidydymis swell and get inflamed, my testicles swelled, and the epidydymitis was in pain. Once the swelling went down and the nerves calmed down the pain went away for several years where I cycled and worked out with no problems. I didn't have any of the urinary problems or rectal pain I have now with prostatitis/CPPS. This time, I was running or riding maybe 3 days a week for no more than a half hour when the epidydymitis returned. I don't think I'm obsessive about excersize and I'm definately not a type A person with a stressful job. I work for a self employed person that gives me tremendous leeway, and I have no real boss or demands. I do my work and go about my day. I don't think I really fit the profile other than I have become much more anxious and stressed since I got these pains and started reading about this condition on the internet. I often wonder if my mental state would have been much better if I had avoided any research on the internet. I find it's hard to find the balance between being knowledgable about your condition and obssesive. In reality I only have some discomfort that doesn't even impact my day. My mind blows it way beyond that though because of the prospects that this discomfort will continue indefinately.

[superuse]

If you read my posts you know that men who have only rode an excercycle a few weeks have had that trigger chronic symptoms. Some have cycled years before a trigger. I should have worded my message that your symptoms (chronic) weren't due to epididymitis but that was probably an additional stressor to the pelvic load. Dump the bike, permanently. As far as obsessive thoughts about permanency of symptoms search "catastrophic thinking" which is part and parcel to the anxiety cycle suffered by most.

[mleach350]

Believe me I have no plans on riding a bike in the near future. But I am also not willing to rule out ever riding again. It seems that everyone here has different conditions with different triggers. Assuming I do improve enough in the future to consider riding again I will be very conscious of any return of symptoms, and take as many precautions as I can including a new padded seat. I am just not ready after a month of symptoms to say I won't ever ride a bike with my kids in the future.

[J Dimitrakov]

3. Has anyone else had extended fevers and chills from chronic prostatitis? I had them for about the first three weeks I felt prostate pain. I was wearing sweatshirts outside in July I was so cold and weak but again my urologist said it is not related to prostatitis which I find hard to believe due to both the pain and the fevers starting the same day.

The "fevers" are quite commons in chronic prostatitis / chronic pelvic pain syndrome with more than 50% reporting them during the initial episode and almost 100% of chronic prostatitis / chronic pelvic pain syndrome patients reporting them at some point of their condition. I was just talking to one of the best neuroscientists in the world here, at Harvard, and he mentioned an experimental model where knocking out some genes involved in the regulation of key the sympathetic nervous system signaling pathway results in fevers and chills. Naturally, I don't know what is going on in your case since I have not examined you and you MUST SEE a doctor for specific advice/treatment. In the interest of complete transparency, 30% of completely healthy and asymptomatic people experience documented bacteremia (bacteria in their blood) but have no symptoms. I wonder whether the immune system in chronic prostatitis / chronic pelvic pain syndrome might be reacting to those transient bacteremia events or whether the "fevers" are purely an event related to abnormal autonomic nervous system activity. We need future studies to address those questions.

Best,
JD

[mleach350]

Thank you very much for your personal reply. I am going to see Dr. Alexander at the University of MD in a week or so. The reason I am switching Urologists is mainly because my current one insists that the fevers are completely unrelated to Prostatitis which is not possible in my opinion. The timing of the fevers and the symptoms are way too correlated. I hope Dr. Alexander will be more willing to hear about my symptoms before dismissing anything. The fevers really bother me in that I start out each day without one and by lunchtime I have a hot skin feeling with slight chills. It never really shows up on a thermometer though so it's a bit of a mystery. I was fearing it's an autoimmune response but hopefully that's just me thinking too much.

[J Dimitrakov]

Thank you very much for your personal reply. I am going to see Dr. Alexander at the University of MD in a week or so. The reason I am switching Urologists is mainly because my current one insists that the fevers are completely unrelated to Prostatitis which is not possible in my opinion. The timing of the fevers and the symptoms are way too correlated. I hope Dr. Alexander will be more willing to hear about my symptoms before dismissing anything. The fevers really bother me in that I start out each day without one and by lunchtime I have a hot skin feeling with slight chills. It never really shows up on a thermometer though so it's a bit of a mystery. I was fearing it's an autoimmune response but hopefully that's just me thinking too much.

Whether one considers the fevers to be related to the "prostatitis" or not depends on whether one considers "prostatitis" or chronic prostatitis / chronic pelvic pain syndrome a conditon localized to the prostate or not. While the debate on this topic is ongoing and there is most probably a subset of patients with localized disease, at least initially, fever is the manifestation of a systemic process.

Best,
JD

[mbaker]

For what it's worth, my chronic prostatitis / chronic pelvic pain syndrome started after coming down with Epididymitis that was aggravated by Cipro which I reacted to very badly and ended up in the hospital. The infection was licked with Augmentin but the pain continued afterwards which turned out to be CPPS.

Upside is that I'm mostly better now (pain-wise) after 18 mos.

--mb

[benzo]

Once your immune system is "goosed", for example by prolonged stress, you can end up with a stress-induced feverish reaction.

I find this interesting. Whenever I'm having a bad flareup (such as now ), I feel feverish but there is no or only a slight rise in my core temperature. So it seems that the flareup increases stress, which in turn can trigger a feverish reaction.
Also, when I'm having a really bad spell my ears turn red. Strange, but webslave's theory would explain this cycle.