Nocturia, frequency, hydrocele, hernia (Wolfcub's case)

[webslave]

Yes, we have a greater tendency to CFS and Fibro. I've had CFS, much faded now, but I've noticed my muscles are prone to developing trigger points all over my body, even though my chronic prostatitis / chronic pelvic pain syndrome is essentially gone.

[Wolfcub]

I have no explanation for this, but in the last days I stopped all drugs (alfuzosin, quercetin)... and since then the greatest relief I've ever felt (?!) till now - there aren't abdominal aches but just a constant mild pressure/discomfort in the penis and perineum. That sounds paradoxical... your thoughts?

However, it wasn't done on purpose and I plan to resume drug therapy very soon and also to try another things such as biofeedback, TENS and prostate massage (by using a prostate massager). I'll keep you updated.

[webslave]

Quercetin is best used on a 3-weeks on, 1-week off basis. That's what you are probably experiencing.

[Wolfcub]

I don't know if this is a coincidence/placebo-effect/some other explanation, but after taking Quercetin for 3 months (500-1000 mg/day) I've been eperiencing less pain significantly (abdominal and other trigger points such as in the sides of the chest close to the armpits and neck). This is quite nice, even though the discomfort/pain in the perinuem and penis has been constant (24/7) not relieved by anything. In the last two weeks I ran out of Quercetin, yet I still feel much relieved. Now the new stock has arrived and I'm going to keep try and taking it and see how things go. My drug therapy has been alfuzosin+quercetin this year.

I'm going to try a dose of CAPS. quercetin (with bromelin) 800mg/day. What do you think? Is taking it with meals can enhance its bioavailability?

[webslave]

I'm glad to hear quercetin has helped you.

I cannot recommend any brand of quercetin other than any accredited quercetin product and Quercetin. Those are the only brands I know of with a guaranteed quantity of the ingredient. Tests performed by Dr Shoskes found that other brands do not have the amount of quercetin stated on the label.

[Caedar]

Wolfcub, forgive me if you've answered this already, but are you doing any physical therapy (trigger point releases, stretching, nerve gliding, etc.)? It's entirely possible that your ilioinguinal (especially because of your inguinal hernia surgery) and/or pudendal nerves are being compressed (by tight muscles, scar tissue, etc.) or otherwise irritated, which can cause penile and perineal pain.

[Wolfcub]

Ok, after self experimenting with internal massage (prostate and its area around 10 till 2 o'clock) I came to the surprising conclusion that my symptoms do NOT appear to be prostate-related (not directly at least)... since on regular basis when I do it calmly having that area pressed do not reproduce my symptoms. My constant urethral discomfort is just the same.

However, what I find TRULY INTERESTING is the systematic allodynia I have, especially in the next following areas:
- Above and below the clavicle (both sides)
- All over the rib cage (especially between the ribs)
- On the sides of the chest, especially close below the armpits (both sides)
When I gently press there I feel sharp pain, much the same as the pain I feel when I press gently along the sides of the urethra and along the perineum.


I'm so confused.

[Wolfcub]

Wolfcub, forgive me if you've answered this already, but are you doing any physical therapy (trigger point releases, stretching, nerve gliding, etc.)? It's entirely possible that your ilioinguinal (especially because of your inguinal hernia surgery) and/or pudendal nerves are being compressed (by tight muscles, scar tissue, etc.) or otherwise irritated, which can cause penile and perineal pain.

My hernia's symptoms had started ~3 years BEFORE my other ones...
That's why I hoped having it repaired might help. It did help, but with the symptoms caused by it... Apparently the genital discomfort/pain (tip of penis and along the urethra) has nothing to do with that. I still have occasional sharp pains in the area above the right side of the scrotum close to the penis - apparently a classical symptom of post herniorraphy pain syndrome (got it fixed with a mesh).

[webslave]

- Above and below the clavicle (both sides)
- All over the rib cage (especially between the ribs)
- On the sides of the chest, especially close below the armpits (both sides)

Sounds like fibromyalgia, which is commonly comorbid with CPPS.

[Caedar]

It could be fibromyalgia, but more generally this pain hypersensitivity is part of a process known as "central sensitization", where your central nervous system becomes more excitable as a result of chronic pain. I personally have allodynia and hyperalgesia, mostly on the right side of my body, through my thighs, arms, and sometimes on my cheeks. It used to also spread through my neck and back. My chronic prostatitis / chronic pelvic pain syndrome doctor told me to take my noticing the sensitivity as a good sign, because generally we chronic prostatitis / chronic pelvic pain syndrome patients don't notice the hypersensitivity away from the pelvis until our pelvic pains are mostly gone. Central sensitization can take a long time to reverse; practice meditation, relaxation, maintain a good diet (with zinc/magnesium supplements; some research suggests that these minerals interfere with central sensitization), and try to keep stress levels low.

[webslave]

You could be right. But then how much of fibro is central sensitisation? Chicken and egg question.

[Caedar]

Yup. This is a major question in pain literature; fibro is considered a central pain disorder, so they certainly overlap to some degree.

[Wolfcub]

So far in addition to quercetin and acupuncture I also tried alfuzosin (actually it was the first thing I tried for 12 months), but I didn't find the latter to be effective. I tried quercetin for the last 4 months - I felt it was helping; A month ago I increased the dose from ~400-500mg to 800-1200mg daily and within days I started to feel a significant relief (until these days). I started acupuncture 3 weeks ago and I think it's been helping (but still too early to tell for sure). Next week I'm about to see a physical therapist trained with the pelvic floor and very knowledgeable and experienced in urologic chronic pelvic pain syndromes such as Chronic prostatitis, Urethral Syndrome and Interstitial Cystitis. Also since the onset of my symptoms (which started in 2005) I noticed stress and caffeine worsening my symptoms (and probably some other food as well).

[Wolfcub]

A little update: I've been today for the first time at the physiotherapist, who is highly experienced with the pelvic floor issues, and in general with treating myofascial pain. HOLY SH**! I've been dealing with so many dysfunctional muscles! From feet to head- all triggered! And the place which most hurt (like 10/10 on the scale - I cried) was exactly above the penis and below the navel (the pubic area). I think it's one of the areas contributing to the constant discomfort in my tip of penis.

She only managed to treat my right side, saying it's worse than the left (this also the side where I had inguinal indirect hernia. The scar's area was also full of trigger points and aching soft tissues. She said we'd need to work externally first before going internally. She also said I've had flat feet and a hypermobility of the joints... which might be linked to this whole malady. She actually started treating my feet and continued up until she reached my face. OMG - also muscles in the neck - painful like hell! It's amazing how this is turns out to be a systemic disorder of the fascia which science and medicine know so little about!

[Caedar]

Looks like you hit a jackpot. It'll be a long process, but it's good that you found somebody who seems like she knows what she's doing.