Do I have chronic pelvic pain syndrome? (h92 case)

[h92]

Hi all,

first, let me introduce myself : I am a 27 year old french man (so excuse me for my bad english). I am having a lot of troubles and pains since more than one year and half, and I am puzzled by the various doctors' answers, as well as the true nature of my problems.
In September 2003, I got an urinary infection, with fever, great aches while urinating and great tiredness. I went to the doctor, who gave me antibiotics and ordered me to do an urine analysis, the day after I had to take antibiotics. The analysis showed the following : troubled urines, visual evidence of infection, but no germ was identified. Doctor thought that no germ was identified because of antibiotics taken the previous day (on _his_ advice).
I took the antibiotics, and things greatly improved. However, some disconfort was still present : ache in the penis, specially after ejaculation, distorded penis (at rest and at erection, with distorsion varying from day to day, but always in the same direction), premature ejaculation, and aches in right epidydime. I was prescribed a prostate echographia, which showed a somewhat enlarged prostate, but otherwise, everything was ok. I did some other urine analysis, all ok.
He gave me anti-inflamatory, but to no effect. The pains lasted for 8 months, varying from day to day.
I then had a relief for summer : I still had disconfort, but the pain was less present, and I could have sex again. My penis was still distorded, with the distorsion still varying, but since aches were less present, the doctor taught that was bizarre but not a problem.
Then, in October 2004, I felt *very* tired, got a little bit of fever, and I had _major_ pain in the rectum, specially when in erection or ejaculation, major pain in epydidime, pain in the penis, urgency to urinate, burning in urinating etc ...
Got back to the doctor, who prescibed me to do yet another urine analyse. Nothing found there, all is ok. I went to a uro, who made me urinating in a glass, looked at it, said (by looking) : "there is something, surely an infection", did a DRE on me, which was painful, and prescribed me antibiotics, and a semen analyse. Which, as always, showed nothing.
So I took the antibiotics, things went a little better, but I still had major pain in the rectum, in penis, in epidydime. The urgency to urinate went away, but it was swapped with bladder pain when my bladder was not empty. I still had my distorded penis, but it was less distorded. At about this time, my right testicule took very wierd positions : vertical when I was standing, turned to the left and on top of the left one etc ...
So I got back to the uro, who was very unpolite with me (more or less telling me that I should be healed and that I was wasting his time), and prescribed me another round of yet another antibiotics, coupled with Permixion.
The pains were still very strong, sometimes to the point of waking me up at night screaming, and simple fact of having a begining of erection was causing me severe pain in the rectum. I took all the pills, but things were still very bad, and I had "moments" (lasting a few days) of great tiredness. He also made me do other round of urine analyse, which, as always, was ok.
I then went to another uro, since this one was very rude on me, and I was very depressed by all the pain, the lack of sex for this long, and the sensation of not being listened to.
The other uro did another DRE, which was again painful. He managed to get some fluid out of my penis while massaging the prostate, which he then analysed at the hospital. Again, nothing was found.
So he prescribed my another long antibiotics treatment, and prolonged the Permixion. Again, that did nothing, and I still have major pains.

So I am here, with one year and half of pains, without any sexual life for that period, barring a one month in last summer, permanent aches in right epidydimite, distorded penis, burning sensations after ejaculation, sometimes burning _after_ uninating, swollen testicules, occasional "golf ball" in the rectum, and sometimes tiredness. All these symptoms go "by wave", ie I have one week where it's better (but still a big problem), and one week where it's awful. I sometimes also have very big ganglions between pubis and leg (sorry don't know how that area is called in English), which can also sometimes be very painful.

So my questions are : what do I have ? Is it infection since ganglions and tiredness ? But if so, why didn't any exam show anything, and why all these antibiotics didn't cure it ? Is it chronic prostatitis / chronic pelvic pain syndrome ? But it so, why the ganglions ? How is it possible to know ?
Some of unusual symptoms I have are distorded penis and wierd testicule position (which is very frightening, believe me), as they seemed to puzzle doctors. Are they a sign of muscular disorder ? Or a sign of infection ?

I am lost, and don't know what I have, meaning I don't know where to look to heal. Do I have to follow the anti-infection path hoping to heal ? Or should I try to look at the Stanford/Wise-Anderson Protocol ?

I know this forum is for chronic prostatitis / chronic pelvic pain syndrome and not infection, but since neither the doctors nor I know which one it is, I thought that maybe some of my unusual symptoms were known by some of you guys here, so this could be a great help in knowing what is the cause of my problem.

Any help would be greatly appreciated since my life is miserable : no sex, no hope of healing, permanent pains, miserable social life, tiredness etc ... Any advice on what I have, what I could do, the name of a good uro near Paris or anything would be wonderful.

I hope I didn't go against the forum policy with my puzzling situation, and I hope some of you can help.

Thank you very much for any advice, and sorry for the long post, and I hope I am not too much offtopic.

[webslave]

Well, mon ami, I think you have a normal case of CPPS, or as I like to call it, pelvic myoneuropathy.

Your painful swollen "ganglions" (lymph nodes) are exactly what I used to have. They took almost 7 years to subside in my case! They are often found in cases of Chronic Fatigue Syndrome (CFS) / Fibromyalgia, which you do have as well. CFS is often associated with chronic prostatitis / chronic pelvic pain syndrome so your great fatigue is not unusual.

In my opinion you should:
- stop visiting urologists, for they shall not help you.
- Stop all antibiotics, for there is no infection, and possibly there never was.

Your bent penis - how badly bent is it? If you curve 15-25 degrees when erect (some sources say as much as 30 degrees) you are probably OK. If your curvature is 45 degrees or more you might have Peyronie's disease. Otherwise it may just be a reflection of local muscle spasm, & same for the strange testicle positions.

Peyronie's:

Peyronies disease is a condition where the internal tissue of the penis turns to scar tissue one side of the penis. This disease was first documented by a French physician named Francois de la Peyroni, whom had discovered that scar tissues in the penis could result in significant bending and erectile dysfunction. It affects men primarily between the ages of forty to sixty. The plaque itself is non-cancerous. Because this scar tissue is hard and inflexible, it causes the penis to bend when erect. A plaque on the top of the shaft (most common) causes the penis to bend upward; a plaque on the underside causes it to bend downward.

[h92]

Thanks a lot for your answer !

I'm glad to know that ganglions/lymph nodes are not unique to me. Doctors always tell me that it's a sign of infection, which is contrary to all analysis. I'm relaxed to know you had that too.
This CFS reminds me of a period some 8 years ago where I was so tired for something like 6 months, for no reason. And it went away like it had come : from one day to the other.

I'll follow your advices on uro and antibiotiocs, since neither helped me a bit.

For my bent penis, I talked about it to the doctor, who said that since it's more bent at rest than in erection, that can't be Peyronie's. At rest it can be as bent as 30 degrees, while in erection, it's more like between straight and 15 degrees. This bending came right after my "urinary infection" (or so said the doctor), I had it straight before. It is also very related to my others symptoms : when it is bent I have started/will start having major pains, and during relief periods, it's less bent. Furthermore, the bending occurs at about the same point burning sensations occurs when ejaculating.
There is also no hard part where it's bent, another indice toward no Peyronie's.

I would tend to conclude the same as you : reflection of muscles, since the right testicle tends to go forward at about the same time the penis is bent to the left.

Thank you *very much* for your answer, it is a great relief to know that after all, I might now know what I have. That should help me go towards a cure.

I think I now need to order Dr Wise's book :)

Again, thank you very much.

PS: about CFS, I do have short term memory lapses when I'm very tired, and I also suffer from migraines, and I also have unrefreshing sleeps. You definitly hit it right on the nail.

[LightningTree]

Hello,

When my symptoms are worse, my penis 'shrinks' (when not erect) and almost retreats into my body. Someone else here mentioned a similar symptom a week or so ago. Is it possible that the bending you get is somehow similar to the retreating inwards that I get? Perhaps it has something to do with muscle contractions distorting the fascia around the pelvis? I don't know, but many of us have noticed slightly odd behavior with our genitals. Do a search using the search option at the top of this page, and you may find other stories with such symptoms.

[CppsDad]

I'm short on time for now, so I'm going to hit some bullets:

1) Agree with Webslave. Sounds like you should explore the chronic prostatitis / chronic pelvic pain syndrome theory. It would not be a waste of your time.
2) I've had the tiredness.
3) chronic prostatitis / chronic pelvic pain syndrome waxes and wanes a lot, especially if you have multitudes of trigger points like I did. This can cause a lot of false results from taking antibiotics (surprise - the 2-5 week waxing and waning cycle is the same as the antibiotics course duration...). So, I wouldn't put too much stock in the fact that your condition got better after a few weeks on antibiotics.
4) My testicles are no longer even. That worried me for all of 1 minute. I could care less whether they are even or not. The only thing I cared about was when the were most uneven, my pain was at it's worst.
5) Sorry to hear about your sex life. I was in much the same boat as you last year (I had an 8 month hiatus), and it was depressing. But I used that time to start getting better. My sex life is coming back now, slowly at times, quicker other times. But at least I know that during a flare-up, things will get better soon.
6) Read a lot on this site. Stretching, external TP work, internal TP work, relaxation, and time really helped me. I had this for over 3 years before finding these methods, and I am significantly better after 8 months of doing them. Even today, I am starting a new flare up (grrrrr), but I know it will be over soon, and then I will enjoy another few weeks of little to no pain, something that would have been only a dream last year at this time.

Try to get your spirits up. I think you have found the source of your problems. Being ignored by doctors stinks. But you aren't ignored by us here. Your recovery may be well within your reach. But you will need to commit yourself to doing the things that we've all done to help ourselves, because they are painful, and aren't magic pills that work immediately. Keep in touch, and be a frequent poster, and you will get the support you need.

Mike

[h92]

4) My testicles are no longer even. That worried me for all of 1 minute. I could care less whether they are even or not. The only thing I cared about was when the were most uneven, my pain was at it's worst.

Sorry to ask this stupid question : what do you mean by "not even" ? I'm not sure I get it, you mean that they aren't at the same height ? Or that they aren't of the same size ?

If it's the first, I do have this problem too, with sometimes (specially when erect) my right testicle going way up, almost like it's going to "get back in", and it's very painful. Looks definitly like some muscle of something pulling it. If I have some agitated sleep, I sometimes wake up with it in that position too.

Thanks all for your answers, I'm activly reading all the forum and getting as much information as possible. I will go to the doctor this week (not the uro, a "classical" doctor), and try to speak to her about muscle conditions, and see with her about the TP I've read. I also experience cramps (in legs and foot), so it looks like I do have some issues with contraction of my muscles, since I have them despite drinking a lot of water.

Oh, and I've seen that chocolate is not recommended, that's a major blow for me :)

[CppsDad]

Sorry to ask this stupid question : what do you mean by "not even" ? I'm not sure I get it, you mean that they aren't at the same height ? Or that they aren't of the same size ?

You are correct. What I meant was that one testicle hangs tightly in and above the other testicle, which hangs lower and free. The one pulled tightly in hurts.

This condition has been reported by numerous other posters. I dont' know if this is a common condition or not, but seems like it could be caused by muscle tension disorders like CPPS.

Mike

[h92]

Hi all,

I received "a headache in the pelvis" yesterday, and I'm reading it with great interest. There's one specific and particular point that I'd like to have your views on : anal fissure. In the book (3rd edition), Dr Wise says that anal fissures can be because of diet or stress related contraction of the sphincter.
What is interesting to me is that I was _born_ with anal fissures (i don't know if i've still have them, never checked, don't even know how). What is even more interesting is that when she was pregnant of me, my mother got toxoplasmosis. She is a natural anxious person and was very frightned by the idea of having a blind or hydrocephalus child. Her stress and anxiety were so important that until I was one year old, she could not give me bath without me screaming like hell (my father didn't have this problem, as I was calm with him). Since there was no test at this time to know if the baby got the toxoplasmosis until his birth, her whole pregnancy was under very high anxiety.
So I was asking myself : is it possible that these anal fissures I had at birth were a result of her anxiety ? Does that mean that my chronic prostatitis / chronic pelvic pain syndrome could be the result of all time tendancy to contract my pelvic muscles ? Or are anal fissures on a new born not comparable to them on an adult ? Do you guys have experience like mine ? Can I see this as another indice to guide me towards being symptoms free, or is it just coincidence and I should drop this of my quest ?
I'm very interested in knowing what you guys think about all that.

Thanks.

[webslave]

This is pretty off topic. Anal fissures in neonates are not that rare. The fact that your mother was so anxious is relevant only in that you are her son, so you are also probably genetically subject to abnormal levels of anxiety.

And if you had anal fissures now, you'd know about it

[h92]

At least I've got an answer :)

Thanks a lot Mark.

[h92]

In my ever lasting quest to find a doctor able to do trigger point release on me, on my family doctor's advice, I went to yet another urologist. Apart from the fact that he was your typical arrogant uro (he thought it was funny to mock wise's theories on trigger point releases, saying you can't work on these muscles), he said after a DRE that my prostate was soft and that the left lobe was painful.
So here's my question : does the fact that the left lobe is painful help in investigating TP ? Is it of any signifiance wrt to CPPS, or is it just my own version of CPPS, without giving any clue on what muscles could be the culprits ? Is it revelant to the fact since about june my pains are mostly on the right side ?
While I'm at it, it sometimes feel what looks like cramps in the perineum (the thing between anus and scrotum), always on the right side. Can it help to locate some TP ?
I am so glad I can talk about all that on this forum. This forum is really the greatest thing about CPPS. Thanks.

[webslave]

typical arrogant uro (he thought it was funny to mock wise's theories on trigger point releases, saying you can't work on these muscles)

You should refer him to the latest edition of Urology Times.

does the fact that the left lobe is painful help in investigating TP ? Is it of any significance wrt to CPPS, or is it just my own version of CPPS, without giving any clue on what muscles could be the culprits ? Is it revelant to the fact since about June my pains are mostly on the right side ?

No, this data will not help. Since pain is referred from all over the pelvis due to neurological phenomena like cross-talk, pinpointing painful areas of the GU tract does not really help, which is why the obsessive concentration on bits of the GU tract by some researchers is so futile (I think of Keay and her "great discovery" of urine markers -- a blind alley IMO).

[h92]

Hi all,

I am on an abstinence period (2 weeks now) to help the whole area decontracting. It has helped my pain go down.
Of course, and specially in the morning, I do get solid erection. And I noticed something : while erect, my muscles spasm, from the pubic bone to the anus, my whole area get much contracted, then decontracted, then contracted etc ... I'm not talking about the "heartbeat" phenomena, where your penis has small vibration with your hearbeat. I'm talking about the whole area having its muscles spasming.
I have tried to control myself and stop the spasms, but I couldn't : I could reduce a bit their frequency, but not stop them. And, like after any prolonged erection, I got pain.

So my question are : is it normal behaviour on abstinence ? Or is it related to chronic prostatitis / chronic pelvic pain syndrome ? If so, is this one of the problem I have to work on, or just a consequence of pelvic myoneuropathy ? Ie, are these spasms the problem, or just a side effect ? Did any of you experience such a phenomena ?

Thanks for your answers.

[lookouth]

absolutely I have had this with arousal/extended erection. I am not sure exaclty how to answer your question, anyone here will tell you determining that type of casuality is very difficult. But my guess is its not a side effect of abstinancy, but you are feeling the spasms because you are more relaxed now and they are more pronounced. My best advice is during relaxation sessions try to target those muscles with your minds, I mentioned this in a old post- my technique is to think about the uncomfortable sensation I get when the muscles spasm and try to mentally reproduce it, without the actually spasm but just mentally track the same pain-pathways that light up when I do have sensation, then concentrate on relaxing those muscles. This has gone a long way to help me relax hard to distinguish muscles. This especially works well for me in the perinuem, where I often get sharp nerve type bursts of pain when the muscles contract quickly. Mentally I can almost totally reproduce the sensation or at least, realize the muscles that contract with this, because I am so used to feeling the sensation. I can then target them a lot better with relaxation. good luck

[CppsDad]

I've gotten this too. I think it's just a sign that your muscles WANT to contract. When I have a flare-up, or during periods of abstinence, my muscles seem to do this more often. I think during abstinence, they are more keen to become active, and during flare-ups, they are weakened and spasm more when tensed at all because they can't hold the tension. In any event, a few things help me when this happens:

1) Get up, walk around, do things to decrease your heigtened state of arousal
2) Stretch. Do this before relaxation. I find that once my muscles are doing this, that I can't stop them without FORCING them to stop spasming, and this kind of goes against paradoxical relaxation anyway. So I find my doing a thorough stretching session in the region, I loosen the muscles up, and relax myself at the same time (as well as satisfying #1 on my list)
3) Use my Theracane on the perineum, abdomen, and anal area. This helps somewhat, by forcing the muscles to give a little. But it also works because it goes to #1 on the list.

I also agree with the prior poster that you are more sensitive to this now than you were before, mostly because you are seeing the relationship between muscle tension and pain in a different way now.

Michael