Does this mirror anyone elses story.

[davyboy24]

6 months ago, had severe pain in testicles come on pretty suddenly along with pain in perineum area and the tip of urethra. Diagnosed by weekend clinic doctor(I couldnt take it anymore on a saturday) with epididymytis(sp). Was put on 1000mb xrl Cipro for two weeks. Pain mostly went away for a week or so and then came back pretty severely. Doctor said I had a hernia, send me to surgeon, who said there was no way I had a hernia. Pain intensified had trouble with erections, swelling of scrotum and perineal area and pain in testicles. Was put on bactrim for 3 weeks. It got mostly better for a bout two months. Came back but not as severe, tried to ignore it for a while, went to doctor and was put on two weeks of levaquin, an anti-inflammatory and a muscle relaxer. Got a little better but never 100%, doctor had me just try muscle relaxer and anti-inflammatory still stayed about the same so he put me on higher dose of levaquin for 30 days and now symptoms are worsening. Pain in perineum, testicular pain, sphincter pain and tip of urethra pain. It gets worse as the day progresses and is seeming to get worse everyday. Frequency and urgency of urination were an issue but that has gone away completely since the first Cipro doses but I still have the occassional split stream and dribbling. Does this mirror anyones story and have you had success getting rid of it?

[webslave]

Do any heavy lifting around the time when this started? For testicular pain, I always try to rule out Pelvic Joint Dysfunction first: https://ucpps.men/lifting-and-testicular-pain-epididymitis

[davyboy24]

don't think it is weightlifting related. I do have a 10 year old handicapped son who is heavy to get around but I do have the burning sensation at the tip of the penis and inflammation of the scrotum and perineum that many are describing on here. I plan to order the reccommended book. I can feel that my muscles are tightened up down there I just don't see how that correlates to the tip of the penis pain.

[webslave]

Having a handicapped child must be very stressful, I'd imagine

[LightningTree]

I'm going to encapsulate the things you said that are posted often, in my opinion:

6 months ago, had severe pain in testicles come on pretty suddenly along with pain in perineum area and the tip of urethra.

Yeah, like you said, those are the same pain symptoms many of us have, and their 'noticeable' form comes on suddenly in many cases.

Pain mostly went away for a week or so and then came back pretty severely.

This is very typical in our collective stories.

It gets worse as the day progresses and is seeming to get worse everyday.

Getting worse as the day progresses is very common.

Getting worse every day may have to do with your stress and your concern about the condition feeding on itself. Just a thought.

I still have the occassional split stream and dribbling.

Very common.

I agree with the poster above that taking care of a special needs child can be very stressful. How are your stress levels over the past 6 months? How are they now that you are experiencing this strange pain?

I find that muscle relaxants help, but I can afford to 'go on a mental vacation' whenever I take one. I imagine your family responsibilities do not 'go on vacation', and you can't just escape from them, nor would you want to. Am I off target?

Have you tried consciously relaxing your pelvic muscles when you are in a lot of pain? Do you find you are clenching them when you are in the most pain? How about earlier in the day, before the pain gets worse?

It can't hurt to see a general practicioner. I found mine was more compassionate than the urologists I was 'bothering'. The gp can also set you up to get checked for any of the other things you need to rule out as possible causes.

p.s. For years, I got tip of the penis pain whenever I held back an ejaculation by squeezing my pelvic muscles. I've had that happen since I was 12. Unless I got a UTI from my hand 18 years ago, I'm pretty sure that pain was DIRECTLY related to muscle tension and nerves.

[davyboy24]

I have tried relaxing, the only place that seems to help is sitting in a warm bath but even that has begun to lose it's effectiveness. I have become somewhat obsessive about it and while that can't be helping things it is difficult to take a mental vacation. On top of the special needs child I have twin girls and in a fairly high stress job which my performance is suffering in due to this condition.

It just blows my mind that we can do organ translpants and I have watched medical miracle over medical miracle performed on my son but can't get to the bottom of this prostate pain. As I type I am sitting on a pillow in my chair to help with the pain, at the young age of 32 I am grateful this forum is out here. I am seeing my gp again today, he does seem emphathetic but I am dissappointed the courses of antibiotics I was put on after the initial flare up were so short and wonder if that isn't the causation for not being able to get it under control now.

I was having similar pains but much more tolerable in my armpits and was able to get rid of it through massage therapy. So yesterday I asked if they did any pelvic floor massage. she said yes. It didn't help and is worse today but she did find what she called a tendon like thing sticking out of my scrotum sack and when it was manipulated I thought I was going to die, pain referred to testicles, scrotum, perineum and tip of the penis. I don't know if this is the spermatic cord or a hernia but I literally screamed and broke into a sweat. Went home at lunch to take a bath and loosened it up hopeful it would stay that way till appointment but now scrotum and testes are all tightened up and you'd need a forceps to get in there and feel that cord.

[LightningTree]

I would say that if you found something in your scrotum that causes that much refered pain, you should talk to your doctor immediately. That's just my opinion.

What about mild testicular torsion? Have you been checked for that?

[Gegatso]

I'm brand new here and this is my first post, but I'll give you what I have as a history thus far... I apologize for it being so long, but this is all that has been happening to me..

In mid July of 04 I saw my GP b/c of swollen testes and burning urination. I have no clue what caused it. Had urine tested for bacteria -- none. Was given 1 week Cipro which cleared up symptoms, but then returned. a few days after I stopped. Went back and received 2 weeks Doxycyclene. Cleared up again.
Around August 5th 04 while on vacation, the burning returned (swollen testicle went away for good during doxycyclene by the way.). I saw a Urologist this time (August 10th, '04). Was diagnosed with prostatitis, given 6 weeks Levaquin. Pain went away within 6 hours of first pill and was gone for good after that.
Fast forward to Jan 12th, '05 -- L. testicle began to hurt and was a bit swollen after doing crunches (which was added to my workout just that day.) I had burning urination later that day and it kept going.
Two days of this and I called my Uro again and got 14 days of Levaquin. The symptoms went away after the first dose and remained that way through the 14 day course of meds. I was off Levaquin for 5 days and symptoms returned, so I saw the Uro on Feb 2nd and got 7 days of 500 mg. Levaquin -- but was told to take ½ dose per day plus Aleve (naproxen) in the am's. That evening the burning got much worse.
Took the ½ dose of Levaquin for 4 days with no change at all, so I called the doctors exchange on a Sunday. (Feb 6th) and the Doc I got said to go back to 500mg and call my regular Uro. (gee, thanks) I took the meds and was pain free until the following morning.
I saw my Uro on Feb 18th, and was put on Elmiron 200mg 2x/day and the diagnoses was changed to IC. (??) He said the antibiotics would not have worked as fast as they did last August and since the Levaquin did not clear it up this time, it was not prostatitis. (personally I think it is BS because the Levaquin was working fine for the 2 weeks I was on it. Don't you need like 6 weeks for it to really work??) So anyway, he scheduled me for a cystoscopy on March 3rd, '05; it showed a perfectly healthy and normal bladder and urethra, but an inflamed prostate gland. (Remember my only symptom was burning urination!) He gave me 6 months of Elmiron and said again it was definitely IC. I have never had urinary frequency, bladder pain, urinary urgency, nocturia. I tested all the worst foods (cranberry juice, coffee, coke, and many others) and have had NO bad symptoms from any. On the day after cystoscopy (3/4/05) I began taking 500mg quercetin, 500mg bromelain, 500mg vit C, all 2x/day. Also, I began taking 500mg zinc 1x/day.
Most days since Feb 4th through March 7th I have been having burning pain toward middle/end of urination, only at tip of the penis. It varied when I had it, but was usually overnight and early morning and like I said - it has stopped completely on 3/7.
On 3/11 I saw a 2nd Uro for a second opinion. This guy was an IC specialist. He did not think I have IC. He thinks my problems are neurological from hernia surgery I had on 5/04! He also does not believe it it prostatitis. He advised seeing a 3rd Urologist ( a collegue) for a 3rd opinion & pain management specialist. I did not see a pain doc. instead I saw a neurologist on 4/4/05 who said it cannot be neurologic in nature but said that a urologist might know more than he does. He also said no testing is available for any of this. (Ugh!)
Lastly, on the 11th of this month I made the mistake of drinking wine in the evening. The next day I had the burning urine and the following day I had a discharge along with the burning! (good grief!) I saw the 3rd urologist just the other day- luckily with all the symptoms in full-force. He reviewed all the notes by Uro #2 to make sure it was all accurate. He took a urine sample, then a prostate fluid sample (which hurts!!), and then another urine sample. After looking at the prostate fluid, he said it was full of white blood cells and that I had prostatitis. He told me to get off the Elmiron (which I gladly did) and prescribes two meds..one turns my urine blue, but takes away the burning, and another to help relax my pelvic floor muscles. I'm not seeing much improvement - but it has only been 2 days.
Any comments would be appreciated...and I appreciate you reading all of this. Is it similar to the original post in this thread? Kinda!

[LightningTree]

You need to be careful that you do not have recurrent infections.
You seem to respond to each of your anti-biotics for more than a few days.

What do your doctor's currently think about your situation?

I am no doctor, so I can't give you a diagnoisis. I can only tell you that your symptoms are very different from mine in that you have discharge, and tend to respond to your anti-biotic courses one after another. That's just my layman's observation.

[Gegatso]

You need to be careful that you do not have recurrent infections.
You seem to respond to each of your anti-biotics for more than a few days.

What do your doctor's currently think about your situation?

Well, the doc seems to be going with the NBP route, which I believe is probably right. I haven't had sexual contact in months, so it can't be bacterial, and by all indications, this episode was totally kicked off by the alcohol. I did put a call into the doc to inquire about antibiotics Friday, but he was in surgery all day...hopefully I'll hear something back tomorrow. I'd like to have 6 weeks of something strong just to make sure there is no infection. (The whole idea of non-bacterial prostatitis causing inflammation and a high white blood cell count will always baffle me). This is my 3rd day on the Urised and Baclofen and I'm taking some Aleve (naproxen) as well. The Urised doesn't seem to be a very strong medication...I still can feel some burning, though not as much as before, but I thought it would completely knock it out. I can't tell anything with the Baclofen yet. It is supposed to help relax my pelvic floor muscles, but I really don't know if that is the root cause. I'm thinking about getting A Headache In The Pelvis just to see what it has to say, even though I can't afford to see a physical therapist.
Thank you for the reply! :)

[LightningTree]

I understand your frustration.

I just worry that you might take our experiences as a diagnosis for you, and we just can't do that. It would be unethical, as we are not doctors. We can only share our experiences with you and trade stories and ideas, to collectively come to a better understanding of pelvic pain.

Most of the people here are here after a while in which doctor's start shrugging their shoulders, and the symptoms are very similar to other people on this site.

There was someone else on here with discharge, you might want to do a search and look at what they said.

But you also talked about swelling. While I 'feel' swelling internally, it doesn't mean that there actually is any. If you can see testicular or scrotal swelling, then you are dealing with an inflammation that I have no experience with.

Maybe someone else here will have a more similar story to yours.

[CppsDad]

Gegatso, your story sounds very typical for chronic prostatitis / chronic pelvic pain syndrome patients. No, I don't think you have classical Prostatitis, but I DO think you are a good candidate for chronic prostatitis / chronic pelvic pain syndrome due to pelvic myoneuropathy. Nothing you have said in your post indicates any other condition that you probably haven't been tested for anyway. But a few things:

1. chronic prostatitis / chronic pelvic pain syndrome symptoms wax and wane frequently, from daily, weekly, and monthly, and can even disappear for months in the early stages while the trigger point clusters are still fairly light. Just type the words "wax and wane" in a search and you'll see it come up a lot. This waxing and waning causes a lot of people who are taking antibiotics to experience improvements after taking them for a week, only to have no improvements in their next course. Or the opposite - they get WORSE with a new course of antibiotics, and try switching to others. Just something to keep in mind. Plus, as you probably have read somewhere on this site, many antibiotics have anti-inflammatory effects, which can help if pelvic myoneuropathy is the cause.

2. Burning at tip of penis, and at the END or urination is a common symptom of chronic prostatitis / chronic pelvic pain syndrome as well. Both symptoms can come from trigger points in the muscles. Search for "tip of penis" and "end of urination" and once again, you'll have a lot of explanations.

3. I agree regarding the question about "swollen" testes. My testicles "feel" swollen, like they are filled with fluid, when they hurt the worst, but they don't actually appear swollen. This "swollen" feeling is a common chronic prostatitis / chronic pelvic pain syndrome symptom.

4. Inflamed prostates, epidymytis (sp), white blood cell discharge - are all common symptoms of inflammation from CPPS.

5. Alchohol can cause a flare-up in IBS symtpoms (this happens to me). IBS can be caused by stress and tension in the abdominal muscles, which makes it very similar to chronic prostatitis / chronic pelvic pain syndrome in that regard. Many people on this site have been diagnosed with IBS and CPPS, but it may all be part of the same syndrome - i.e. muscle tension in the pelvic region. I think the alcohol can cause muscle spasming.

6. Pain from crunches and hard workouts indicates muscle-related pain. This might be a GOOD clue for you that you don't have an infection, but rather some very inflamed muscles. I don't think a wicked crunch would launch a hidden infection in your prostate, do you?

7. Don't worry about your resources right now. If you have CPPS, much of the recovery can be done by YOU, through a steady course of stretching, relaxation of your pelvic floor, and self-massage external AND internal using your own fingers or a massage implement such as the Crystal Wand. Or, if you have a girlfriend or spouse, they can participate too. But if possible, before doing any internal work, I recommend at least 2-3 sessions with a specialist in this area to teach you what you need to know, and at least show you how hard to push, how long, etc... The latest edition of AHIP (3rd edition) has pictures too. I don't have it, but many people on this board are now getting it.

8. You might now be passed the time for worrying about infections. You've taken so many antibiotics the last year that I doubt you have any infection at all. You sound convinced that you want to "find one" and just make sure there isn't one, but after this next dose, I think it's time for you to change your frame of reference. Your current state of mind doesn't allow you to DO anything; you just have to wait for the infection to show up again. It CONTROLS you. But once you can get passed this, and accept there is no infection, YOU can take control of your recovery. This active step is very positive and makes a lot of people better emotionally almost immediately.

Go read the front page of this site, and the "new to this site" section, as well as the AHIP book. See what it's all about and let us know how much applies to you.

But if hot baths help, relaxation helps, walking helps, you are anxious or tense, and stress makes things worse, then you have a good case for spending some more time in these forums and reading all you can.

Mike

[Gegatso]

Lightning and Mike-
You guys are great! Talk about making me feel much more at ease and comfortable!! Thank you SO much - really.
There was so much written in the last two posts between you, I can't even begin to think where to reply, but first of all let me say that I am RELIEVED - not in any specific sense, but I'm sure you were once in my position where you thought "what the hell is going on with me??" Hearing words like yours puts it all into a better perspective as well as a new light. Let's just say I feel more "at ease" and probably lost a bunch of unnecessary stress by your words alone.
I'll just say two particulars and then leave my inexperienced, suffering voice to rest a bit. These are both for Mike's points - which are all excellent, so please don't take this wrong.
I do think crunches can cause a big flare-up in the prostate simply from the urinary reflux syndrome, but what do I know? Is it an infection? Probably not; matter of fact today I popped some Aleve (naproxen) and have been feeling MUCH better - which completely goes into the inflammation theory, I guess. I'm not sure any more if I really want to press my Uro for antibiotics, or just ride this out as I'm doing.
I think the hardest thing for me to wrap my brain around is that this can all be caused by muscle tension in the pelvic area. Maybe this is something that is common among us guys...I mean, I completely understand the theory and process of how it happens...it's just hard for me to accept that *I* have the disorder by *that* cause. I quite possibly do, though.
I just have never been much of a stressed-out kind of guy, and in the past few days I have been trying to mentally take note of tension in my body - specifically the pelvis. I'll go ahead and tighten the two sets of muscles that I can distinguish (one being the set you can tighten around your anus and the other being the set that you use to squirt the last of a urine stream out - (*yeah, technical medical terms here!) ;) But when I then relax them, then try to relax even further, I feel in my "normal" mode. Maybe there is more tension that I'm not aware of...then again, I don't even know where one trigger point is, so I might as well be talking about the mechanics of space flight.
But anyway, in short (too late for that, I know)...I am feeling mentally a lot better about all this. To me that might be the bigger part of the battle. I KNOW that I can take control of this. Now it is just a matter of doing so.
I sincerely thank you guys for your time and helpful words.

[LightningTree]

Well, your should thank Mike, not me. I was at a loss with your story. Mike's post was very good, and he has been around here longer, so he knows more of the symptoms.

For example, I never had inflammation signature, such as elevated White Blood Cells.

But I can add this: It is totally possible for muscles to cause penile pain. I've told this story a million times, but I am going to tell it again because it makes it very clear how muscles are related.

Since age 12 or so, I learned how to delay an orgasm by using my pelvic muscles. I could feel an ejaculation coming, squeeze my muscles, and let the oragsm pass. I could enjoy the orgasm without completing compelting the process, allowing me to continue and have another orgasm without looseing an erection.

The important part: Whenever I did this, (which was often) about 80% of the time, 20 minutes after ejaculation, I would get a horrible burning pain in the tip of my penis. This pain would last for several hours. So I would take 2 Aleve (naproxen) and forget about it.

Naturally, I don't do this anymore.
That was tip of the penis pain, purely as a result of my use of my muscles. No infections, especially not at age 12, I can assure you. Unless I've had an infection for the past 19 years, this must be a purely muscle/nerve thing.

Now, as long as you believe me, then there is clear evidence for you.

I'm glad Mike's response helped you relax. Its really important to relax.

Also, I used to be a very heavy video game player. I would play multi-player war shooter games for 6 hours at a time. I now realize that when I did that, I was contantly tensing my pelvis. I was also constantly tensing while writing papers for my work. I didn't even know I was doing it until this year, after reading a Headache in the Pelvis, and started paying attention with moment-to-moment relaxation.

Watch yourself during the day. My dad is not an anxious perosn at all, but he throws his back out during stress, whether he will admit it or not. SO although he feels calm emotionally, it doesn't mean his body does.

[grover]

I just have never been much of a stressed-out kind of guy, and in the past few days I have been trying to mentally take note of tension

But when I then relax them, then try to relax even further, I feel in my "normal" mode. Maybe there is more tension that I'm not aware of

AHIP addresses this specific issue, saying that the uptight tense state of the pelvic floor after being tense for so long seems to be 'normal.' Even though it is tense, it feels normal to you. I never would of described myself as a stressed out kind of guy either - but have recently realized I do seem to hold tension in that area. I never realized it at first, I went about 4 years not noticing and then I read AHIP and still didn't notice for about 4 months and then slowly in the last 2 months I've become quite conscious of the area tightening with anxiety - although to be honest I still don't know how to stop it but I am going to Stanford in May, hoping to learn to relax.

And just an overall comment, if you keep reading and trying things you'll find something that will improve your symptons. You just have to be patient about it. Good luck.