New Member - Looking for Direction - Notes On What I have Tried

[HateCPPS]

Hi Everyone,

I am a 25 y/o male who has been suffering with CPPS for nearly 4 years.

Initial onset started during a period of high sexual frequency with partner of about 6 months. Thought it may have started with overholding ejaculation (I took about a 2 week break from intercourse/ejaculating and then really overheld through starting and stopping method for over an hour).

Tests I have done:
Countless Urinalysis - Always Negative
Prostate Secretion Test Twice (4 Glass Method) - Negative
Semen Test - Negative
Cystoscopy - Urologist Marked Normal - Said slightly narrower near bulbular urethra but not significant, no problem passing 17 french scope past. May be congenital.
Color Doppler Ultrasound - Everything normal - Low Blood Flow in Prostate said to be typical in Prostatitis patients
3T MRI of Pelvis - No abnormalities - Low Signal in T2 Weighted Images - Secondary to Prostatitis (Figures)

Problems I have
Pain in perineum area, hurts to sit, I work a desk job which is agony.
ED problems constantly. Cannot maintain erection or get full erection. Sensation or feel good feeling is not there. Totally ruined sex life.
Only way I can even keep a sort of erection seems to be if flex my want to ejaculate muscles constantly.
Slower urine flow, after ejaculation can barely even pee, but normally it is about 65%-75% of full flow. Bladder is emptying for the most part -verified by ultrasound.
I DO NOT really have much in the way of frequency issues. I always sleep through the night without peeing for the most part. Do not have to go too much like others.

Medications I have tried
Doxycline 30 days - No relief
Cipro 10 days- No relief
Ibuprofen 800 mgs - Feel quite a bit better taken twice a day
Daypro 1200mg a day - Felt some relief but not as much as ibuprofen.
Amitriptyline - Maybe slight relief - makes me extremely tired
Rectal 10 mg valium - whole body feels relaxed but pelvis still cannot fully relax
Baclofen 10 mg oral- Makes very tired and lazy feeling similar to Valium
Medrol Dose Pack 7 Day Taper (Steriods) - Felt quite a bit better on day 1 or 2 on higher dose then not much later on taper
ED Drugs (Viagra,
Alfuzosin - Definitely notice scrotum and penis go from being tight and snug to body like I just got out of a cold pool (which is how they usually are since this condition started) to loose and dangly. So I can see some muscle tightness being relieved but I almost seem like pain is a bit worse on it, also some fatigue.
Other alpha blockers (Flomax, Doxazosin) - Floxmax didn't like retro ejac, doxazosin seemed to make more tired.
ED Meds (Viagra, Cialis, Staxyn) - Definitely helps blood flow to area, but erection still only about 90% - not full, and feeling is not normal.. sex still not very pleasurable.

Supplements - Quercetin, Turmeric. May help slightly.

Physical Therapy - I have went to about 40 PT sessions ranging from 1 week to 2 week frequencies. Did not notice any major oh wow relief. PT is well known in our urology community too, so I'm not sure why it is not working for me. Thought it could be due to still sitting 40 hours a week, not sure.

Other details

I was a avid cyclist/mountain biker growing up so I think that could be a contributing factor as far as from the muscular stand point. I can recall in school always being restless not wanting to sit on perineum area during class for long periods. I was having tightness in the area but never any sexual problems or major pain just some tension and restlessness. In the summer when I was on break I would notice this go away. It wasn't until a very specific day time where these symptoms developed (almost like a light switch). Unfortunately this happened in the Spring right before I started my first job out of college so I have not had any major time away from my desk job.


Anyway this is my history, I'm sure I have left out some detail in the idea of being somewhat brief.

Things I am interested in possibly exploring next are:
A higher dose of some sort of anti-inflammatory drug such as steriod for a longer period of time.
Getting back into PT on a higher frequency in conjunction with standing desk.

[webslave]

Color Doppler Ultrasound - Everything normal - Low Blood Flow in Prostate said to be typical in Prostatitis patients

Doppler ultrasound studies have shown that there is INCREASED blood flow, probably due to the effects of inflammation, in men with CP/CPPS. http://pubmed.ncbi.nlm.nih.gov/10737481

Supplements - Quercetin, Turmeric. May help slightly.

Which brand of quercetin? Many brands have little active ingredient, or are formulated in such a way as to be poorly absorbed.

Physical Therapy - I have went to about 40 PT sessions ranging from 1 week to 2 week frequencies. Did not notice any major oh wow relief.

What kind of PT? Internal trigger point massage?

A higher dose of some sort of anti-inflammatory drug such as steroid for a longer period of time.

Not likely to be helpful, and potentially dangerous.

Getting back into PT on a higher frequency in conjunction with standing desk.

Depends on type of PT and who he/she is.

[HateCPPS]

HateCPPS wrote: ↑Fri Feb 03, 2017 8:47 pm
Color Doppler Ultrasound - Everything normal - Low Blood Flow in Prostate said to be typical in Prostatitis patients
Doppler ultrasound studies have shown that there is INCREASED blood flow, probably due to the effects of inflammation, in men with CP/CPPS. http://pubmed.ncbi.nlm.nih.gov/10737481

I thought I have stumbled across articles that said the same. I'm wondering if I misheard the doctor or he mixed his words.

Supplements - Quercetin, Turmeric. May help slightly.
Which brand of quercetin? Many brands have little active ingredient, or are formulated in such a way as to be poorly absorbed.

The Vitamin Shoppe- 250 Mg Quercetin with 125 mg with Bromelain (from pineapple) per tablet

Physical Therapy - I have went to about 40 PT sessions ranging from 1 week to 2 week frequencies. Did not notice any major oh wow relief.
What kind of PT? Internal trigger point massage?

Yes - Always internal trigger point / myofascial release. I also had lidocaine injections injected into 3 different trigger points by a lady doctor who specializes in pelvic pain to not much result.

[webslave]

I thought I have stumbled across articles that said the same. I'm wondering if I misheard the doctor or he mixed his words.

Either that or he doesn't know the first thing.

The Vitamin Shoppe- 250 Mg Quercetin

Get any accredited quercetin product (see my signature)

Always internal trigger point / myofascial release. I also had lidocaine injections injected into 3 different trigger points by a lady doctor who specializes in pelvic pain to not much result.

Female therapist? Unfortunately some of them have fingers that are too short and weak to give you the "Oh Wow!" experience.

[HateCPPS]

Anyone have any trouble with sinusitis and/or ear problems?

Over the past year or so I began to get ringing in my ears and several months after I started to feel dizzy at times which has now progressed to mostly constant.
I was thinking the ear ringing initially was coming from Cialis and other ED drugs but I am worried it may have caused some damage to my ears.

I had audiology tests and my hearing is fine. But after a VNG test it shows my right ear balance system is not working properly. MRI of IAC and brain did not show anything though I had a few spots the neurologist said did not look like anything to worry about.

Anyway wondering if anyone had anything like this where it may be linked to a drug such as the ED meds or a combo of alfusozin and alcohol or something. I never really had any health problems until I got this CPPS so was wondering if there may be some link.

[webslave]

Sinusitis is commonly reported by men with CPPS, for some reason (may be a tendency to atopy in our population).

Dizziness is a common symptom of alpha blockers. Tinnitus (ringing in ears) is common in the general population and also a side effect of many drugs (especially antibiotics and NSAIDs). I have it too and it tends to recede if ignored. Keep away from loud music and earphones/headphones.

[HateCPPS]

My doctor asked me what bothered me the most about my problem and I replied the ED. I told him Cialis and Viagra don't seem to restore the pleasurable effect and that I still feel like I have a 90% erection that's kinda a "fake erection" (more drug induced then pleasure/urge erection).

He said it maybe a good idea to get my T levels checked. Do you all think this may be a good idea? Has anyone else younger with this went? I am 25 and don't have an issue putting on muscle mass or anything. I feel down about this problem sometimes which makes me feel tired and kinda unexcited with life. But could the T issue really be the issue to the ED?

[webslave]

I don't think it's a good idea, especially at your age. Have you tried the Quercetin supplier products [discontinued product]? I am still waiting for someone to comment on those products.

[Noll]

Do you think it's worth getting a T check if you're older Webslave?

[webslave]

No, unless you really have low sex drive and depression. Routine T supplementation for normal men is not a good idea.

http://mpegmedia.abc.net.au/rn/podcast/ ... 3_1730.mp3

[HateCPPS]

I feel even after 40 PT visits, trigger injections, Uroxatral, rectal valium.. all these different meds I've tried I can't make any substantial improvement.

I do have a career where I sit at a desk all day and I feel like this could be the real killer of why I am not progressing..

Has there been any cases where someone quit their job and then got big improvements? I remember even when I was younger squirming around in the classroom because I had some tightness in the pelvis well sitting. Now that I am sitting upright with more lean forward over a computer, I feel like this is even more weight onto that prostate area.

If I sit back with a lot of weight on my back kinda kicked back say watching a movie the pain isn't that bad but sitting more properly with more weight on the perineum is a killer.

Wish I could just quit my job for a year and see if that would give me a big improvement, but financially I don't think I could do that.

[webslave]

Before quitting the job, try a standing desk. Or even try a different chair as a first step, e.g an ergonomic chair, donut cushion (some have them built in), or a kneel chair

[lroyal]

Have you ever tried taking anti inflammatory stuff

Black seed oil
CBD oil
Ginseng tea
Vitamin C , D
Fish Oils
Quercetin
Strong probiotic

I gather of-course the inflammation of the prostate is causing issues with the nerves etc effecting the penis.

I figure whether its an auto immune response, and I am guessing is by the changes in ones semen. Anything you can do to combat the inflammation through strict supplements and diet could help quite a lot in relief of some symptoms.

Check this guys story -

https://www.medhelp.org/posts/Erectile- ... ow/1226219


Webmaster correct me if I miss spoke

[LabMonkey333]

I work a sitdown job too and have had to learn to adapt. I’d go with the standup desk and “donut” cushion to start. I alternate between sitting and standing. Check out the Jarvis standup desks and the Gelco G Seat cushion. I’d also recommend changing your vehicle if the one you have is uncomfortable. I went from a Jeep Wrangler to a sedan with heated seats. This has helped me control the pain in the perineum tremendously. Taking breaks to go walk is very important as well.

[ChgoGuy]

I was off work for 6 months for something else after it happened. It didn't help a bit. Why you may ask? Because it made me sedentary, and the worst thing for me to do, was sitting around doing nothing. Work actually helps me somewhat, but then again, I don't have a sit down job.