BEST "DO IT YOUR SELF" TECHNIQUES....That I can learn online? Please help me.

[Wayan Jack]

I am a US citizen living in Indonesia. I am impressed by the idea that this is caused by tense pelvic floor issues, but I have a problem: where I live, there's no good places/therapists/doctors that I can go and see to teach me or help me with this. I have no choice except to self-diagnose and self-treat, esp during this pandemic situation. I'm tired of taking anit-biotics for this, that don't seem to be working.

Please, anybody:

Can you refer me to a Youtube channel, book, or professional whom I could pay to give me online consultation regarding all these great things I keep reading about here? Such as:

How can I find and work out trigger points on my own? Is there a web site or Youtube I can learn from? A book?

What's a "wand?" A tool to massage trigger points? Can I make my own?

What about PT exercises?

Etc etc.

Many thanks.

[webslave]

The forum is full of this information. Please do more reading here and if you still have questions in a few days, I'll discuss with you. Unfortunately I'm very busy right now but I'll have time next week

[cam3roni]

Spend time going through this website and reading different men’s experiences.

Uptown mike on YouTube has some good stretches. Search for internal massage pelvic pain on YouTube for videos.

You can google and YouTube pt exercises.

A wand is a tool for massaging internal trigger points in the rectum. You could technically make your own but id just buy the Therawand.

[Wayan Jack]

Forgive me webslave, (and others) but I have used the search button, and still need to post a question:

(I am trying to self-diagnose and treat in a part of the world where the medical care is very poor).

Could I have CBP or CPPS with only two symptoms?

1. I have a localized penile pain. It is an acute soreness, not a burning sensation, and very localized. Sore as in a bad bruise after somebody punched you. It briefly gets worse after urinating, but not during urination. It hurts a lot, mostly at the base of my penis extending to about half way up the shaft. This is my most irritating symptom. It is very sore at times, almost always present, and greatly affecting my quality of life.

2. I do have a very slight discomfort in the region of my prostate. Again, a "soreness", but it is at a level I could live with. The penile pain is much worse.

With just those two symptoms, my penile pain being the worst, could that still be CBP or CPPS?

Many thanks, to anyone who can share their experience.

NOTE:

For 25 years I have suffered from frequent urination but no other symptoms at all until recently, as described above. But several doctors have said that the most likely cause was "overactive bladder" syndrome, although drugs for that have been no help. I realize this is a sign of both CBP or CPPS, but because I have suffered this urination problem for years without a single other symptom, I think this is a separate problem not caused by CBP or CPPS.

[webslave]

Neither. Based on your dysuria, it's probably interstitial cystitis/bladder pain syndrome. IC typically shows as painful urination (before, during or after urination). Pain in bladder and/or bladder neck can show up as pain at base of penis.

Try to get a flexible cystoscopy to have a look around and see what's happening in there. Could also be urethritis, etc. The uro may be able to see an area of inflammation, ulcers in bladder, narrowed urethra, to name just some of the possibilities.

[Wayan Jack]

Many thanks Webslave. Are you a doctor, btw? Is there any way I could engage you professionally, via video call, or?

I am in Indonesia. The doctors here and medical care/hospitals, etc. are far from western standards. I could find somebody to do a cystoscopy, but I really don't think they would do a good job diagnosing me. I already did a TURP here and an inguinal hernia repair recently, not sure they did a good job, or if the TURP was even necessary. Please advise, and once again many thanks.

[webslave]

Hopefully you have private medical insurance. There are a few good facilities in Jakarta. Otherwise go to neighboring Singapore or Thailand for excellent care.

I am not a doctor.

[Wayan Jack]

Hopefully you have private medical insurance. There are a few good facilities in Jakarta. Otherwise go to neighboring Singapore or Thailand for excellent care.

Thanks webslave - unfortunately, travel to Thailand, Singapore, or Malaysia is impossible at the moment due to travel restrictions that may last a long time yet. Even getting to Jakarta from here is a bit of a hassle now.

Thus, if I could please trouble you again for your comments please: (I truly have no one to talk to I feel is experienced enough to discuss this with, including the Urologists available to me here)

History:

For 23 years I have suffered frequent urination, with low pressure and volume. 20 years ago I saw a Urologist in Singapore who did a cystoscopy, and told me there was something wrong with my bladder neck, and that surgery would fix it, and that he routinely performed this surgery. I assume he meant a TURP.

I declined, and learned to live with my problem, as I never experienced any pain: just the frequent urination. I did try Flomax, betmiga, and several other medications, none of them helped.

Last year, the problem started getting a little worse so I went to an Urologist in Malaysia. He did an ultrasound and MRI and told me my prostate is very slightly enlarged, but not so much as to cause my problems, and that I likely suffered from an overactive bladder. I took medication for that for a several weeks, but no change.

6 months ago my frequent peeing problem got worse, along with a new symptom - very occasional pain the penis and perineum. So.....

I saw a urologist in Bali and he performed a TURP, saying that he would look inside me first, and then if he saw anything obvious that needed to be removed in the prostate he would, otherwise he would do nothing. He removed some bits of prostate. That did not solve my peeing problems. I also had an inguinal hernia repaired on the same day. ( I am also considering my problem might be a damaged Genitofemoral nerve from the hernia operation, but my pain did start a couple of months before the operation).

Since the operation, the penis and perineum pain that started a bit before the TURP and hernia operation have gotten much worse.

After the operation, I tried a 12 week, long term course of Fosfomycin, and it did seem to make my pain better, esp. during those periods I took it daily for several days or more. (otherwise every 2 days).

I stopped the Fosfomycin 7 days ago, and my pain came back, and has been pretty bad every day since then. (Possibly I made it worse by doing some yoga stretches at the same time I quit, or was it stopping the Fosfo? I don't know, but it's been a week now, pain is still chronic and difficult to bear)

In thinking through all the above, plus what you said:

"Based on your dysuria, it's probably interstitial cystitis/bladder pain syndrome. IC typically shows as painful urination (before, during or after urination). Pain in bladder and/or bladder neck can show up as pain at base of penis..........Try to get a flexible cystoscopy to have a look around and see what's happening in there. Could also be urethritis, etc. The uro may be able to see an area of inflammation, ulcers in bladder, narrowed urethra, to name just some of the possibilities".

I have a question: I could have interstitial cystitis, I suppose, but.....
I read that the symptoms of interstitial cystitis can include:

a. Pain when the bladder is filling, relief when it empties,

b. A persistent, urgent need to urinate

I have none of those, and, importantly, the pain in my penis does not seem to be connected to urinating, it just sometimes gets worse a bit after urinating, but not always.

My question:

Considering all the above, would you still think my problem is interstitial cystitis? It doesn't seem to match my history or symptoms that well, no??

Would deeply appreciate it if you have the time to look all this over and give me your opinion. I have nobody else to talk to that I think is knowledgeable enough to provide a learned answer, including the urologists I have access too here.

Many thanks,
Jack

[webslave]

Fill out your signature (see my signature for instructions). Include your age.

From your description, it looks like you were diagnosed with a stricture a long time ago. It would have perhaps been better to act on it back then. That's why you need another cystoscopy, even if it a "bit of a hassle" getting to a good clinic in Jakarta. Once you have the results of that cystoscopy we can discuss further.

[Wayan Jack]

Ok, thanks webslave, but going to Jakarta right now I feel is just out of the question. All of Jakarta is a red zone right now, and on lockdown. I might just have to do that test here in Bali. Remember though, that I did have a TURP operation 5 months ago, I watched it on a monitor, and the surgeon was looking for things like a stricture but didn't mention anything like that.

if you have any further comments, please go ahead. This conversation has been very useful to me.

(note that I have updated my signature as asked)

[webslave]

At your age, BPH comes into play too, and is a big cause of LUTS (lower urinary tract symptoms). Hopefully the TURP would have fixed that, but the LUTS could have kicked off a bout of CPPS that will fade over time.

Bladder neck: your surgeon may not have explored the bladder and bladder neck, just went for the prostate. I'm not a surgeon so I cannot say whether a TURP would cure a bladder neck constriction. I think your problem should be explored further by a urologist before you decide that you have some form of UCPPS (although it is quite possible).

If the pain was made worse by yoga stretches, that points to CPPS. But could also be post herniorrhaphy pain syndrome.

Because I am not a doctor, and because nobody can diagnose over the internet, this forum is best suited to people who have thoroughly explored their conditions with a uro (or two). Once all other etiologies are excluded, CPPS becomes the likely culprit.

Your case, at your age, and with a history of TURP, inguinal hernia, possible bladder neck stenosis, etc etc is complex and best handled by a uro at this stage. I don't feel confident advising you until some clarity emerges.

[Wayan Jack]

Your case, at your age, and with a history of TURP, inguinal hernia, possible bladder neck stenosis, etc etc is complex and best handled by a uro at this stage. I don't feel confident advising you until some clarity emerges.

Understand. But I keep reading on forums like this and elsewhere how so many sufferers go on for years trying one thing after the other with no success.

There seems to be few urologists around that study this problem to the depth I need, even in countries where the medical care is really good. And I see that even renowned urologists are greatly divided about what causes this. Some still say it's 90% bacteria. Their arguments make sense to a layman like me. Then, with equally convincing arguments, you have those who say it's mostly CPPS. I feel helpless and with nowhere to turn except the internet.

Here in Bali there's a number of urologists, but they don't even do prostate massage or culture prostate fluid here.

You mentioned there were good urologists in Jakarta. I have not heard that but if you have any names that you can pass along whom you know to be good, please do.

Many many thanks for your time

Jack

[webslave]

And I see that even renowned urologists are greatly divided about what causes this. Some still say it's 90% bacteria.

Nope, that's a view only held by a tiny, tiny minority of uros, usually older men who are out of touch with modern research.

You mentioned there were good urologists in Jakarta. I have not heard that but if you have any names that you can pass along whom you know to be good, please do.

Try these people:
https://www.columbiaasia.com/indonesia/ ... es/urology

All you need at this stage is an examination and a cystoscopy. If that's all negative, CPPS becomes more likely.

[Wayan Jack]

Webslave, forgive me for being tedious, but the link you gave - may I ask why you think they will do a good job?

I've been here for 30 years., so asking this from experience

[webslave]

Because it's a large multinational company
https://en.wikipedia.org/wiki/Columbia_Asia

I would be very surprised if a company like that employed uros who are not properly qualified and cannot adequately perform a cystoscopy.

If you are that paranoid, you will have to wait until you can fly to Singapore or Thailand.