Trying to figure out what I´m really suffering from?

[Pelican]

Lately I've begun to doubt that chronic prostatitis / chronic pelvic pain syndrome is what causes my symptoms. I mean the symptoms really seems like chronic prostatitis / chronic pelvic pain syndrome but might as well be CP or maybe even IC. The thing that makes me doubt it is what triggers the pain and what doesnt. Hot showers, sitting at hard surfaces, bycycling and unknown reasons seem to make things worse. The strange thing though is that ejaculation, kegels, different foods, alcohol, weightlifting, running and exercising doesnt trigger pain at all which it seem to do in most chronic prostatitis / chronic pelvic pain syndrome cases. The kegels I've been doing has begun to show some results and starting to help both my PE and ED. Since my primary pain comes from the bladder IC might be it but then the prostate shouldnt ache right? So it could be CP or CPPS. Since I started stretching, relaxing, morning walking, working out and eating herbs it has helped a bit. I just can't figure out what triggers the pain. Pressure on the bladder(cobra stretch) really does and the other things I mentioned earlier. I've done a cystoscopy and eaten all antibiotics possible and left several urine samples. No bacteria found then. Another thing that points to chronic prostatitis / chronic pelvic pain syndrome is that my butt muscles are really sore like always. I know very little of nerve entrapment and I've only heard that it has almost the same symptoms as CP and CPPS. It really feels that my case differs from most of the other ones here but I dont know.
I really need help to try and figure this one out and I dont know any better place to turn than this forum.

[LightningTree]

Hey Pelican,

You seem to be down about the waxing and waning of your symptoms.
That is totally understandable. But remember waxing and waning is a positive sign, as given time the waning can be made longer and the waxing much shorter.

You also seem anxious about getting a diagnosis of cause. Keep in mind, though, that symptoms between people differ. I have a twin brother who has this as well and our symptoms are not identical. So, in my opinion, some variation under the same cause is likely.

I can't offer you any answers about causation, but I can tell you that many of us go through the same emotional cycles. Most of us here can empathize.

People here with symptoms similar to yours might give you more info. But stay hopeful, you have a trick to help you: exercise. And also keep in mind that staying calm about CPPS, while not easy, is one of the keys to beating back CPPS, as I have experienced this. "Staying calm" is a euphemism, though, the real trick is to get your endocrine and nervous systems functioning normally. And "normally" is a euphemism for how we would like to be, calm, content, etc. Not like the anxious people many of us are.

Ok, so that was an attempt at redirecting your mind. But now lets indulge your fear about categorization and your symptoms, cause I know it is irresistible to think about it:

Hard surfaces, bicycling, etc... those are classic chronic prostatitis / chronic pelvic pain syndrome symptoms. I have the same problem. Its largely from irritation of your muscles and prostate in the pelvic floor. Ejaculation without squeezing the pelvic muscles doesn't hurt me. Kegel's help me when done properly. (Not like I fear many chronic prostatitis / chronic pelvic pain syndrome people would do them, sucking in, then staying mostly sucked in, repeating etc, and thinking that they are relaxing the muscles.) So we both benefit from those. Haven't tried weightlifting, but I have moved heavy furniture around and not had any problems.

While I do not have direct bladder pain anymore, I think that this is just yet another area that can be affected by whatever the underlying cause is.

How is your urine stream? Is it reduced during flare-ups? Do you get urine dripping after you are done urinating? I have these symptoms during flare-ups.

Finally, nerve entrapment is a theory about a cause for CPPS. chronic prostatitis / chronic pelvic pain syndrome is a name for a syndrome, (problems without a known cause).

What I DO know is that regardless of categorization, one can get much much better. There are people around these boards who have improved significantly, and for the time being, I am one of them.

[CppsDad]

Confidence in our diagnosis is something few of us ever achieve to a full extent. When symptoms are at their worst, it makes us doubt ANY theory, even good ones. And this doubt prevents us from doing the therapies we need fully, without regard for how much pain they might cause. You seem to be in this period.

Unfortunately, for many of us, no sure fire diagnosis will EVER come. So my best advice is to keep doing all of the things recommended by the Stanford/Wise-Anderson Protocol (stretching, PT, massage, relaxation), because it CAN'T hurt, and at least you know you are covering all bases.

I think there is a lot in common with IC and PE and CPPS. Many of their symptoms are caused by problems with the muscles in the region, irritated nerves, and heightened levels of sensitivities caused by the aforementioned items. So, even if you have IC only, continuing your SP protocols won't be a waste of time.

With that said, you have a LOT of common chronic prostatitis / chronic pelvic pain syndrome symptoms. In fact, you have many of the MOST common symptoms. Tight rectal muscles, pain when sitting, prostate pain, pain during bicycling (something I stay away from under penalty of death), pain in the abdominals and from the cobra stretch... These are all of the most common symptoms of pelvic myoneruropathy, caused by nerve cross talk, trigger points, tight irritated muscles, etc...

In the beginning, before I was fully into treatment, I had SO many trigger points and trouble spots that nothing made sense. I was always in pain, no matter what I did. Everything seem to make it worse. And everything seemed to make it better (before it got worse again). So, like you, I was very confused. After 3-4 months of hard therapy, I started making gains. Now, I have symptoms, but they are more predictable, have known triggers, and follow pretty regular pain cycles. But this is only because I've reduced the many cross-talking problems that all contributed to pain in the same areas. Unfortunately, you won't know this is the case until you've removed some of the barriers, and doing so could take months.

You are definitely in the tough stages of recovery. I feel for you. You have to trust your instincts in the end, and a lot of the SP recovery forces you to go against that instinct, with little to no results for many many months (or more). Hang in there, and keep trying. AND keep researching all possible angles, as I'd hate to keep you from finding out what's wrong.

Mike

[scotsman]

Now, I have symptoms, but they are more predictable, have known triggers, and follow pretty regular pain cycles.

I think this is the big point for many of us long-term sufferers. We make a lot of relative progress early on, via physio, relaxation, etc, then we settle down to a routine of treating our known triggerpoints. The treatment of those triggerpoints either makes then go away (only to come back again within hours/days) or to take the edge of them away (quieten them down a bit).

I'm now in a pretty flat period of improvement (have been for the past 12 months). I don't have any new triggerpoints, and it's rare that I get a full pelvic floor flare-up. However, I do have to keep treating the same remaining triggerpoints over and over again. However, every month I try something a little different (try to treat an area from a different angle, applying more pressure for a but longer, etc). I'm also very very aware that whilst I'm doing the physical side of the protocol pretty religiously (stretching every day, external triggerpoint work every night and internal triggerpoint work 2 times a week) I haven't been able (for a pile of excuses) been able to stick with the relaxation element. However, I have been doing 30 mins everynight for the past 2 weeks do hopefully I'm getting into the habit of making the time.

I've found that with the more time that passes I understand my body better and start making the connections between the various triggers that cause flare-ups.

Pelican - you say your butt-muscles are always very sore - have you had any triggerpoint work done on these?

Richard.

[Pelican]

Thank you very much for your answers! Not really knowing what causes the pain can really be hard to deal with, especially when so called specialists dont know what theyre talking about. My symptoms really do wax and wane and has done so for quite some time, but looking back maybe a year or so it was worse than it is now.

Kegel's help me when done properly. (Not like I fear many chronic prostatitis / chronic pelvic pain syndrome people would do them, sucking in, then staying mostly sucked in, repeating etc, and thinking that they are relaxing the muscles.

Actually that is exactly how I do them I do about 200 short ones and 30 long ones throughout each day and like I said I've benefitted from them a lot when it comes to libido. I do suck in really tight and then relax completely. This has also helped me be more aware of pelvic relaxation during the day.

How is your urine stream? Is it reduced during flare-ups? Do you get urine dripping after you are done urinating? I have these symptoms during flare-ups.

My urine stream can get really weak while I'm in pain and with it comes the hesitation and frequency. I have noticed an improvement with the stream however the last couple of weeks, some days it seems stronger than it has in a long time. So I am seeing some progress, I do progressive relaxation 30 mins each day, stretch for 20-40mins, kegels, morning walks 45 mins 4/week, weightlifting 4-5 times/week and I've begun eating L-arginine, bee-pollen, E- vitamine, B-vitamine complex, saw palmetto, omega-3, magnesium, multivitamin and zinc. Quercetin from solgar is on the way! I really dont know what it is that has helped or if its a combination of all the above. I do know that weightlifting and jogging/walking helps since it has in the past.

you say your butt-muscles are always very sore - have you had any triggerpoint work done on these?

Yes I have visited two different PTs who couldnt find triggerpoints but confirmed that I shouldnt be that sore at all. I've tried to find TPs myself but without results. I might have found a few in the abdomen and upper back(not related to CPPS) but the ones I found doesnt diminish, could be sore spots or really evil TPs. Its hard to do on your own when you dont know how its supposed to feel. Big thanks to Mike for trying to help with that in previous posts!

Except for this morning which was really bad when I woke up I've felt a little better the last few days. Signs that my ED is slightly better and libido slowly coming back puts a real big smile on my face I'm not even close but small progress like this makes me think that there is hope and thank GOD for this forum!!!

[scotsman]

....Yes I have visited two different PTs who couldnt find triggerpoints but confirmed that I shouldnt be that sore at all. I've tried to find TPs myself but without results.

Finding triggerpoints can be really tough at times. There was one I had, just inside the anus, that my physio could always find straight-away, but when I tried to find it at home I never could - even though I must of spent hours working over the same area. Then the next day when I saw the physio again he'd find it first time again.

I've also found lots of internal triggerpoints that only refer pain when I put pressure on them from a specific angle. A lot of times I feel we forget that triggerpoints are three dimensional and not just two dimentional.

Make sure you try and work on your Gluteus Maximus and Adductors (see here for a diagram). It may be that the pain is referring to your butt.

Richard.

[LightningTree]

My urine stream can get really weak while I'm in pain and with it comes the hesitation and frequency. I have noticed an improvement with the stream however the last couple of weeks, some days it seems stronger than it has in a long time.

This is a good sign. It took about 9 months before my urine stream went from usually being weak to usually being stong. That was followed by reduced symptoms.

You are being vey agressive with your exercise regime. Try to make sure your 30 minutes of progressive relaxation is trully relaxing!

[CppsDad]

This has been a very good post. I've learned something from reading the other responses, all of which have been good. This is what this forum is all about.

I especially liked Richard's approach:

However, every month I try something a little different (try to treat an area from a different angle, applying more pressure for a but longer, etc).

I don't think I do this enough. I'll have to make it a point to keep trying new things more often. But with my stubborn TPs, I think this is necessary.

Hang in there Pelican. I am hopeful that you will find something to base progress on one of these days.

Mike

[scotsman]

I don't think I do this enough. I'll have to make it a point to keep trying new things more often. But with my stubborn TPs, I think this is necessary.

Following our posts about Therecane uses the other day Mike, I've been using the Therecane for treating my perinum (my main area of pain). I'm able to hold the position much longer than by just using my fingers and also I'm treating a larger area each time (due to the larger size of the Therecane tip). The pain has been horrific but I feel I'm making more progress. This is after just using my fingers for that external treatment for the past 18 months. Always worth trying something different and each time I do something different it helps me understand the condition better (in relation to my body).

Usually when I touch my perinum (the transversus perinei superficialis) when squatting the pain is severe - but after the therecane use I can touch that area without that much pain (probably down from a 8/10 to a 3/10). Of course, the next day it's back to the normal level - but hopefully I'm onto something.

Mike, how's your perinum these days? Does the transversus perinei superficialis hold most of your pain? How would you descibe the pain level (out of 10) for that area and do you have to press firmly to have the pain or is a light touch enough?

Richard

[CppsDad]

Long live the Theracane!

Mike, how's your perinum these days?

Before doing any work on my perineum with the Theracane (pre-January), I could not have sex. The "tps" muscles caused so much pain during arousal and ejaculation, that it was enough to trigger a flare up for a month. During ejaculation, it literally felt like someone had put a clamp on my penis, blocking the ejaculatory ducts, and it felt like my perineum and testicles would explode (I actually thought things were blocked for a long time). After only a month with the Theracane, doing much of what you describe (pressing and holding it in and around the central tps area), the pain went from a 9/10 to a 1/10. It still comes back a little if I don't work on the area, OR if I don't have sex for a long time (seems to stiffen up). Overall, my perineum is much improved, probably a 2-3/10 most days. It gets worse by sitting, when I don't do my stretching, and during stress. On bad days, it burns a little, and feels like a 3-4/10.

Does the transversus perinei superficialis hold most of your pain?

No, for me, it was only one piece of the pain. I think the tps held most of my perineal pain. But my abdominals are really bad, causing tremendous testicular pain, and my levator ani and cocxyx area was extremely tender, causing all sorts of rectal pain (the golf ball, prostate pain, etc...). I was hit by this thing from all angles, to be sure. All of those are improved now, but I think I have another year to go on this.

How would you descibe the pain level (out of 10) for that area and do you have to press firmly to have the pain or is a light touch enough?

Some days, I can recreate some pain with only a light touch. Other days, I have to really dig in. I haven't tried pressing on it during a squat stretch yet. I think I'll try that tonight and report back. I've thought of doing this before with the Theracane, but never got around to doing it.

Mike

[scotsman]

No, for me, it was only one piece of the pain. I think the tps held most of my perineal pain. But my abdominals are really bad, causing tremendous testicular pain, and my levator ani and cocxyx area was extremely tender, causing all sorts of rectal pain (the golf ball, prostate pain, etc...). I was hit by this thing from all angles, to be sure. All of those are improved now, but I think I have another year to go on this.

Likewise, initially I'd say the levator ani and especially the cocxyx were horrendous - but I managed to get rid of the golf ball sensation pretty quickly (within a few month of starting physio). My whole pelvic floor was a mess of triggerpoints, but I've now got almost all of it undercontrol and I'm just left with the perinum pain (80% of my pain comes from there now). Unfortunately the pain from that area is almost as severe as my whole pelvic floor was at the beginning but I feel I've improved so much as I've managed to get those other areas under control (which has led to my frequency issues being resolved and my post-orgasim pain increase isn't there now). My pelvic floor also doesn't have that 'wrong' feeling it did in the early months.

I haven't tried pressing on it during a squat stretch yet. I think I'll try that tonight and report back. I've thought of doing this before with the Theracane, but never got around to doing it.

Interestingly for me I have almost zero pain pressing on that area without squatting, but when I squat it seems to bring the tps's to the surface and the pain is very severe (that lovely shooting/burning pain!). For me the best way of treating them is to sit on the toliet and reach down between my legs (whilst pushing my backside down). Little tricky getting the Theracane down there as well when on the loo but I'm managing.

Richard.

[CppsDad]

I'll have to try it on a toilet. I tried the squat, but to be honest, the whole setup was confusing and somewhat dangerous for me. My knees can barely take the squat as it is, and while fiddling with the Theracane, I put a lot of pressure on the knees to balance. Overall, it wasn't successful for me.

I've used a wall to simulate a squat before (scoot really close to it and put your heels on the wall and press). You don't get quite the same squat, but I think it might be enough to bring your TP's out for the Theracane. I'll try that one tonight too and see if it works.

Mike

[scotsman]

Might be worth just trying it with your fingers first (when on the toliet) to see if the pain is there when squatting.

Richard.

[CppsDad]

Might be worth just trying it with your fingers first (when on the toliet) to see if the pain is there when squatting.

That's going to make it hard to hold my newspaper....

[scotsman]

Might be worth just trying it with your fingers first (when on the toliet) to see if the pain is there when squatting.

That's going to make it hard to hold my newspaper....