My CPPS Stories and Experience’s

Male pelvic pain, prostatitis, IC
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Re: My CPPS Stories and Experience’s

Post by webslave »

The ED associated with CPPS is not a permanent thing. If you can get the condition to improve, the ED fades.
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Re: My CPPS Stories and Experience’s

Post by European »

Mild ED is pretty often. My erection is also not that excellent is it once was, but if there was no pain, I would not consider that to be a life altering condition. This neverending exhausting pain cycle is the beast we have to beat. Other things will improve subsequently.
Age: 41 | Onset Age: 36 | Symptoms: Chronic pain in the penis, groin, pubic area and pelvic muscles, mainly ischiocavernosus area | Helped By: Elavil, PT | Worsened By: Stress, ejaculation, depression | Other comments:
Chriss
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Re: My CPPS Stories and Experience’s

Post by Chriss »

webslave wrote: Fri Jun 16, 2017 8:44 pm The ED associated with CPPS is not a permanent thing. If you can get the condition to improve, the ED fades.

Yes Mark, exactly. It looks like symptoms package. In vicious cycle pain, when the pain comes back (pain including inflammation in prostate region -anterior of anus, itching and burning in urogenital tract and perineum and throbbing in perineum, coccyx and sacral), ED and Libido problem increases and when the pain and inflammation decrease, the ED and libido problem decreases.

My CPPS started seven years ago with decreasing of libido and ED for two months at the first and then inflammational pain revealed gradually. At the moment my PT tells me that I have unremarkable trigger point/taut band internal and external.

It seems anxiety, stress and "sexual arousal" causes inflammation in prostate and urogenital regions.

I think most of my problem is inflammation in prostate and urogenital felt as burning, itching, throbbing and tingling in perineum, coccyx and scrotum. Paradoxical relaxation alleviates symptoms sometimes but it seems its not enough.

What's your suggestion Mark?
Is there any supplement or medication for inflammation?
I'm confused and agitated.
Thank you
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634
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Re: My CPPS Stories and Experience’s

Post by SoraStar »

Hey Chriss,

A good Quercetin Supplement has been shown to help with inflammation. It definitely helped me.

Also, there is good evidence to suggest that Flower Pollen Extract helps with CPPS as well. I haven't tried it yet but have some ordered. If you look around the forums you'll see a lot of info about them. :)
Age:24 | Onset Age:16 | Symptoms: General Mild Pain & Discomfort, Pain & Pressure in Perineum (rarely) | Helped By: Less Stress. | Worsened By: Stress Stress STRESS | Other comments: :boom:
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Re: My CPPS Stories and Experience’s

Post by webslave »

You could try Neurontin (gabapentin), Elavil (amitriptyline), Lyrica (pregabalin) — not necessarily in that order, and do research first.

But your first course of action is simply to relax, meditate and de-stress. This is often difficult due to life circumstances, I know...
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Re: My CPPS Stories and Experience’s

Post by Alphalifestyle »

Same here Chriss, pelvic floor and other muscles are just slightly tense, no triggerpoints to be found, but this relentless inflammation around the prostata and bladder which accompanying symptoms of numb glans, premature ejaculation and pain during/after ejaculation, IBS. All those symptoms go away in (the more and more rare) times when the inflammation seems to go down.

I always try new stretching routines and working on my muscles but I feel like my core issue is this inflammation deep in my pelvic floor. I can even feel it when I perform a digital rectal examination aka internal work on my self 4-6 inches in at the front side when I press there I feel intense burning inflammatory pain.
Age: 26 | Onset Age: 16 (but got much worse around 22) | Symptoms: hard, cold flaccid penis; reduced sensation/numbness; diminished erections; premature ejaculation; urinary frequency; burning urination; urgency (bladder and urethea inflammation); painful ejaculation | Helped By: Exercise, cold shower, internal massage, massage of inner tights, abstinence, stretching | Worsened By: sex/masturbation; working on the computer too long | Other comments: I am always worrying it is nerve-related and cannot heal naturally.
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Re: My CPPS Stories and Experience’s

Post by Chriss »

Hi Friends, during the previous two months I had remarkable improvement but after the stressful incident, "ALL" the thing returned back : ( it was like a building that is built gradually and by a small stress all the building collapsed.

Anyway, I'm in flare up at the moment, in this week I used "hydroxyzine" 50mg for a night and 25mg next morning and 25mg... For inflammation and itching. It works to eliminating "itching" in urethra but it was very very very hypnotic and makes me sick too. The side effects is not tolerable for me. Unfortunately I have the same reaction to amitriptyline. When I use amitriptyline it was so hypnotic too. What's your suggestion about the other alternatives. Most of my irritating symptom is inflammation, itching, burning in perineum, urethra.

Wish all, all the best.
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634
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Re: My CPPS Stories and Experience’s

Post by Chriss »

webslave wrote: Sun Jun 18, 2017 8:47 pm You could try Neurontin (gabapentin), Elavil (amitriptyline), Lyrica (pregabalin) — not necessarily in that order, and do research first.

But your first course of action is simply to relax, meditate and de-stress. This is often difficult due to life circumstances, I know...
Thank you Webslave, I've started Neurontin since 3 days ago, its amazing. It reduced the "itching" and "burning" up to 50% ! :thumbup:

At the start of my CPPS (~seven years ago), one of my doctors prescribed me "Neurontin" and it was not useful at that time. It was like drinking of water for my pain but at this course of Neurontin seems I have very good feed back. I don't know why but it seems function of neurontin is useful with internal and external PT and combining with relaxation.

I'm going to try "Diazpem rectal gel" in next days to reduce the spasm and contraction and also residual pain.

Another question: what's the difference between the Pregabalin and Neurontin? How can I find which of them is more compatible with my case?
Thank You
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634
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Re: My CPPS Stories and Experience’s

Post by Chriss »

Alphalifestyle wrote: Mon Jun 19, 2017 11:46 am Same here Chriss....
Hi Alphalifestyle, as I said in previous post I had a good result from neurontin to decrease of burning and itching in urethral and perineum. W/A protocol combining with some medication like (neurontine/ pregabalin/rectal diazpem gel) may be helpful for your case. search before use them.
Good luck. :thumbup:
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634
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Re: My CPPS Stories and Experience’s

Post by webslave »

How Gabapentin Differs From Pregabalin
http://www.pharmacytimes.com/contributo ... pregabalin
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Re: My CPPS Stories and Experience’s

Post by Chriss »

Feedback :
during last two weeks :
Deep friction massage around tailbone (deep muscles around coccyx) + Pressure on painful muscles (5 Sessions PT)+Relaxation + Gabapentin (First week: 100mg morning and night) / Pregabalin (Second week: 75mg morning and night) ---> pain/itching/ burning reduction at least 40% with fluctuation of 20% (40% ± 20%) in perineal/urethral/ around the anus(sphincter)
Note : regarding this thread (viewtopic.php?f=37&t=8787) : It seems relaxation of brain specially in anterior side, may be useful, I had a good experience.
Side effect : I had cold last week and used adult cold+Allegra-> mix of drugs made me so sleepy-> after stop of pregabalin some part of symptoms returned back+headache -> so i have started the pregabalin again

Questions:
  1. I dont know which of "gabapentin" or "pregabalin" is more compatible and useful for my case? Is it necessary to go to doctor? How can I find it?
  2. How long is duration usage of "gabapentin" or "pregabalin" usually?
Thank You
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634
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Re: My CPPS Stories and Experience’s

Post by webslave »

  1. They are similar, but since pregabalin is used for fibromyalgia as well, that's what I'd go with
  2. May take several weeks to achieve an effect. If no effect, stop
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Re: My CPPS Stories and Experience’s

Post by Chriss »

Thank you Mark
  1. What's your idea about the link about mast cell stabilizers: https://en.m.wikipedia.org/wiki/Mast_ce ... n_syndrome
  2. Which of the mast cell stabilizers are useful in CPPS? https://en.m.wikipedia.org/wiki/Mast_cell_stabilizer
  3. Is there any relationship between Mast cell activation with Trigger point activation? It seems activation of one of them activates the other!
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634
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Re: My CPPS Stories and Experience’s

Post by webslave »

  1. It's a new condition called "Mast Cell Activation Disease", very interesting, I have a lot of the symptoms. As Trump would say: "We'll see". Thanks for alerting me; I'm keeping an eye on it now.
  2. Quercetin is the best mast cell stabiliser for CPPS. And the best available quercetin is any accredited quercetin product and Quercetin, for sure.
  3. There could definitely a relationship between mast cells and trigger points. This was postulated even back in the 1970s:
The genesis of trigger points is somewhat obscure, but may be due to direct trauma, chronic muscle strain, ischaemia or a host of other common factors. Histologically those in muscle present as small areas of myofibrositis characterized by the presence of a metachromatic substance with platelet aggregation and localized oedema in the interfibrillar connective tlssue. It has been postulated that trauma is the reason for the extravasation of platelets which release serotonin and that this causes vasoconstriction; hence the oedema. This in turn results in degranulation of mast cells with consequent liberation of histamine and heparin. The histamine counteracts the vasoconstriction and the heparin prevents clotting of extravasated blood and lymph.
Mast Cell Activation Disorder – Yes, It’s Real
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Re: My CPPS Stories and Experience’s

Post by Chriss »

It has been postulated that trauma is the reason for the extravasation of platelets which release serotonin and that this causes vasoconstriction; hence the oedema. This in turn results in degranulation of mast cells with consequent liberation of histamine and heparin. The histamine counteracts the vasoconstriction and the heparin prevents clotting of extravasated blood and lymph.
Thanks Mark. So it concludes that activated mast cells by trigger points can be deactivated by deactivation of trigger points. You agree?
Age: 37 | Onset Age: 30 (May 2010) | Symptoms: Pain, Itching, Burning, Shooting Pain Sometimes, throbbing, in Perineum, Scrotum, Sphincter, Coccyx, Lumbar, Sacral, ED, Reduced Libido, | Helped By:Headache in the Pelvis, Internal PT, External PT, Gluten Diet, Relaxation, Vacation, | Worsened By:Stress/Anxiety/Suspense, Gluten Alcoholic Drink, Tadalafil, Viagra, Sexual Excitement or Arousal, Pelvic Floor Muscles Clenching| Other comments: Nerves Block (Ganglion Impar, Iliohypogastric, Ilioinguinal, Genitofemoral, Pudendal Nerve block with no effect, Quercetin, Pollen Aid, with Limited Effect, My Story is here : http://ucpps.men/forum ... =37&t=8634