Typical CPPS...or something else?

[European]

Pundl, I would say that your case is pretty typical for CPPS. The trigger points in anterior pubococcygeus can radiate into front parts of pelvis, that means especially the penis. I have also "mother of all trigger points" somewhere there in the right side...when I am better I can hardly notice the direct location, when I am in the flare-up mode, it is almost palpable and very concrete. All the sorrounding areas (penis, groin, pubic area) are highly sensitive and constatly aching when I am bad. This is tough battle but never lose hope...

[pundl]

Hi!

A short update: I'm "celebrating" my 2 year anniversary of CPPS. All in all the symptoms are the same in these two years - nothing really changed. I've pain every day, some days are better than others. What changed is my point of view: in the first year I was reading everything, visited so many doctors, every day was filled with the idea: "I have to find a solution for this". Now at the end of year two, things a more relaxed. It's more like: "OK, I have this pain, I can't change it, so I have to life with it." This more relaxed view makes it easier.

But, I haven't give up completely. In July I will travel to Holland. I have an appointment at the Pelvic Pain Clinic (F-act). I booked a 3 day program. Really looking forward for this. They are very experienced - if my problem has something to do with tension, trigger points or with the musculoskeletal system - they will find it. I will give you an update when I was there.

Admin comment:

[MajorSky1]

Spots of pain in the pelvic floor will be stubborn for months at a time. It's possible they will go away on their own, or just relocate to a different spot or the other side. The key is not to get hung up on those pain spots. I know it's not easy. Just keep gently releasing them, but eventually try to ween off of internal TP release with wand or fingers, or do it only once in a great while.
Also, you can drive yourself crazy trying to figure out all the little muscle, nerves, fibers, strands you feel when you put a finger in and try to sort it out. Don't bother worrying about it. The pain will tell you otherwise, but that's the key to beating it. Don't let the pain consume you.
It's the sensation of pain that is causing a hyper awareness of what you feel when you prod around in there. When there is pain our brains want to figure out what's causing it and what's wrong. However, what's usually wrong is the sensation pathways themselves which cause chronic tightness.
The most difficult thing is to be able to detect when to begin to reduce trigger point release frequency and just leave it alone, because when it's time to leave it alone, it still doesn't feel so well in there.
The key to this is to keep yourself in a comfortable state of mind for a long duration. By this, I mean to reduce stress, do thing you enjoy, learn to ignore the nagging pain and accept that even though it's setting off constant warning bells in your mind, there really isn't anything wrong except that pain is stuck on and their may be tightness (but not always).
Relax, even when the pain is telling you otherwise.
Eventually it will resolve and little by little, it will go away.

[pundl]

Here is my update after being at the "F-act pelvic pain clinic" in Enkhuizen/Holland:

I booked a 3 day program. Before the appointment, I had to send a very detailed questionnaire to the clinic. At the clinic I had several hours per day of examination and therapy. This was done by Fetske Hogen Esch and Branca Smit. The conclusion was that there are a few points that could be the reason for my pain:

1. I have a dysfunction in the right SI joint, a weakness of the left gluteal muscle and a twisted pelvis. This causes ligamental strain of the left sacrotuberosus and sacrospinal ligament. This causes constriction of the left pudendal nerve and neuralgia in all three branches of the nerv.
2. I have tremendous power in contracting the pelvic floor, but I hardly can bulge in the different direction. This is a sign, that I contract the pelvic floor quite often. The muscles of the left side of the pelvic floor are more contracted than on the right side. But I'am able to relax and there were no trigger points.
3. I contract the abdominal wall involuntary

All in all it was a good decision to travel to Holland. Fetske is very experienced in pelvic pain and a very nice person. I had the feeling that she is very interested in pelvic pain and CPPS. She has also connections to researchers and other therapists in that field all over the world. Those 3 day's were quite special. I traveled with my wife. Enkhuizen is a beautiful small town, we had a wonderful time there.

I got my exercises, I'm doing them every day and I will report again.

Admin comment: thanks for the report!

[wolle]

Thank you for this report. How much did you pay for the 3 day programm? Is the accommodation included in the price?

[pundl]

I paid 1500,-- Euro for the 3 days. The pelvic pain "clinic" is not a clinic like a hospital. It's more a doctors or physiotherapists office. You are there only for a few hours on each day. They have some medical machinery like an ultrasound to watch how your pelvic floor muscles work, or a special probe put in your anus and you can walk around with this, sit down,... so you can see on a tablet which muscles you use and contract. But that is all not important or necessary. The most important point is their experience and knowledge.

[pundl]

Great news! It's getting better!

After 2.5 years it's the first time that I can say it's getting better. The pain is much better. I can sit on normal chairs for 2-3 hours. Most of the time I feel no pain or only minor pain - that is for me the most important point. After sex/masturbation I feel no more pain than usual. But it's not the same as it was before (before CPPS). My penis is still very sensitive, the meatus is still red. Libido is not the best - but that's life - I had my 45th birthday in November.

I still have to be careful with certain movements specially movements that stress the pudendal nerve like squatting. After squatting I fell tingling on the left perineum and left side of the penis.

What have I done?

I did the exercises learned from the F-act pelvic pain clinic every day for 2 months - no effect.

1. After that I started a gluten free diet. I'm still on it - now about 3 months
2. I also do stretches and foam rolling (also with vibration) every day (as prescribed in all the books about pelvic pain) and
3. I also started deep belly breathing. The breathing works great. I never did this in the 2.5 years. I could not imagine that this simple thing has such an impact - but for me it works very good.

So - I don't know which of these 3 methods (gluten free, stretching/foam rolling, breathing) are the reason for my improvement - I will go on with all of them and I hope it's getting even better.

Admin comment:

[pundl]

Short update: Unfortunately things got bad again - I've no idea why. Not as bad as it was 2 years ago - some days are quite good, others are not so good. Even on the same day symptoms can change quite fast. That's really astonishing. It's also very frustrating. More than 2 years and no real breakthrough. But I guess that's part of CPPS.

Over the time I notice, that some points are constant: laying down, sleeping, walking and stretching always improve my symptoms. Sitting, standing for longer time, and ejaculation (hours after) worsen. I notice, that I very often contract my abdominals and my glutes e. g. during tooth brushing, cooking, very often movements when I have to slightly bend over. And especially during these movements I feel this radiating, burning pain in the penis. When I feel the pain, I realize that I contract these muscles, than I relax and very quick the pain vanishes.

So, in my case, I assume, that muscle tension, weakness of the central part of the body do play a big role. So many report here in the forum of anxiety or guilt after a sexual contact. I don't feel that this is my problem. I'm not a fearful person.

I decided to try the DCT program. I have a good feeling for that. I'm already doing stretching - but DCT is different. There is no harm, and it is empowering - I will try that.

[Gipsonb1]

PUNDL - I noticed your first post is almost two years old and I am curious where you are today and has DCT exercises work?
I’m experiencing the same thing going on 6 months and would like to talk more. Is your flare ups affected by IBS? I believe I have IBS bc of my body’s lack of consistency in this department.
I’m 48 and suffering from same things you described and have journaled each day from the onset 6 month ago hoping to find the trigger and source of issue.
Hope you’re doing much better!
If you don’t mind, It would help me out tremendously to have a conversation with someone experiencing my same issues.
Email me if you don’t mind

[email protected]

[pundl]

After more than 3 years I am quite sure what my problem is – I’m almost pain free now for months.

Haven’t updated for a while, so there’s a lot to tell…I try to keep it short:
In September I went to a famous urologist, he said, I should make an other MRI of my prostate. That was a big mistake. I had never problem with MRI/Gadolinium contrast. In the past, I had 4 MRI – no problem. But that 5th made me very ill. 24 hours after the MRI/Gadolinium I became quite ill – the term is "gadolinium deposition disease". As a physician, I never heard of that before. I had to stay in bed for 2 weeks, couldn’t work, massive headache and vertigo, brain fog. After 2 weeks I was slightly better, had a constant headache every day for the next 3-4 months. Now, after 8 months, thank god, I am back to normal except my kidney function. The GFR was before the MRI >90, now it is 72. I check it every 2 months – I hope it won’t get worse, maybe it will get better. So my advice: be careful with Gadolinium contrast – it is not that harmless as we all thought.

But due to this problem – I had to rest and lie in bed quite often, even during the work I had to rest and lie down. Something strange happened: After a while I had almost no pain in my pelvis. I discovered that I used to clench my pelvic floor all the time. It’s not a massive clenching, but I do it all the time when I’m standing or sitting, driving the car and so on… I wonder why no physio told me that. I’m still clenching – no reason why - but I also learned how to relax the pelvic floor. I have to do it several times during the day. It’s an active relaxation of the pelvic floor. You must concentrate on this. After a few minutes, I feel how the pelvic floor opens and relax. In the last 6 months I had almost no pain in the penis, there is no red tip anymore, I can sit for longer periods, I can have masturbation/sex without pain. The pain can come back when I have a stressful day, when I sat on a bad seat (a couch) or when I had to much force during sex. But after 1 or 2 days everything is fine again.

So as far as I can say, my mysterious pelvic pain is solved. Questions remain: why do I clench all the time? Why is the pain always on the left side? But I am very glad with the situation as it is today.

[webslave]

why do I clench all the time?

Ah, yes, if we could only answer that. It's probably something to do with your basic level of arousal, an inbuilt tendency to be sympathetically dominated as opposed to parasympathetically, a genetic proclivity to hypervigilance.

[tosh]

@Pundl
Can you please share some of the techniques you are using for relaxing the pelvic floor?

Thank you

[pundl]

Hi Tosh!

I have no special techniques. It's quite simple. Several times a day I lie down for a few minutes and feel inside the pelvic floor. I try to relax - and after a few seconds the pelvic floor opens. During driving the car, brushing the teeth, cooking...and so on - always check your pelvic floor - is it relaxed? That helped me a lot - I have almost no pain anymore. It's not the same as it was before my CPPS started - but I'am very glad with the situation as it is now.