UCPPS - Prostatitis, Interstitial Cystitis Forum

My CPPS Stories and Experiences

Hi All,

I have CPPS since seven years ago, I decided to share my experiences and story with you. its beneficial for you to not follow the ways I went and I didn't treated. Hope to have your experiences too.

All things started seven years ago, I was 30 years old. One night I was very stressful and I was with my girlfriend. (Generally I'm anxious person).

After some problems made me anxious, we went home and drank lots of malt whiskey, after that start to have sex. During the start of intercourse suddenly I lost my libido! Also lost erection! I was too stressful and I used to clench my pelvic floor. It was very very amazing that what happened! It was the first time that I experienced ED and Low Libido. Due to high stress and whiskey I vomited that night! That night was terrible for me and I was awake till morning. The next day I had to go for work, all the day I was crashed, with high headache and nausea. After coming back home I took a shower and ate acetaminophens and slept for 12 hours. The next day I was ok but I feel low libido with erection dysfunction.

Two months I was going to Urologists and they prescribed General drugs and supplements for ED and Low Libido Problem. After two months of very Low Libido with ED, Pain in perineal and scrotum region started. I found other urologists and they prescribed some antibiotics and anti-inflammatory drugs with diagnosis of bacterial prostatitis. Ten months using these types of drugs (antibiotics, none steroid anti inflammation, alpha-blockers) with no remarkable effects. The pain was distributing more and more in perineal, scrotum, anus, coccyx and sacral areas regions with libido and ED symptoms.

I have done cystoscopy about 3 years ago: penile urethra was OK, inflammation and reddening after external sphincter in prostate urethra with length of about 4 cm. Fibroid stricture after external sphincter. Dilatation has been done at that time fr stricture. At that time I didn't have urethra stricture symptoms.

I started lots of treatments:

1. Ganglion Impar Block: I've done ganglion impar block two years ago by Lidocaine and Steroid in UT Guide method. It reduces some pains (about 20% pain reduction in coccyx region and some part of perineal areas) but pain reduction was not so satisfactory that convince me to do PRF (Pulsed Radio Frequency Block- in which Nerves is coagulated by medium degree of heat), So I didn’t go on and gave it up.
2. Ilio-inguinal / iliohypogastric/ Pudendal Nerve Block: Six right and left lidocaine and steroid injections performed under UT guide in two sessions (one session right side and second session left side) -NOTHING after Injection!- no effect! It was like drinking a glass of water! Nothing has changed. So I didn’t go on the procedure.
3. After that I started pelvis floor PT, :
   1. Bio feedback was not useful (10 Sessions)
   2. Internal and external Pelvic floor Electrical Stimulation (TENS, FES, …) had low and limited effects and symptoms reversed.
   3. I started internal and external trigger point-taut band- myofascial releases based on WA protocols. It has limited effects and reduces my symptoms but its reversible and by a little stress all starts again.
   4. Relaxation based on Yoga methods and Dr Wise's method reduces the symptoms.
4. Also gluten diet reduces the inflammation and pains. So I tried to avoid the gluten foods.
5. Quercetin and pollen aid has very low and limited effects.

If I want to concluded these terrible and misery 7 past years just two procedures can have a limited effect :

1. Wise Anderson Protocol (PT-Relaxation)
2. Gluten free Diet.
3. Also using quercetin and pollen aid has very low and limited effects.

At the moment, I am evaluating approaches below:

1. Superior Hypogastric Plexus Block: if anyone have experience it would be appreciated to share the experiences.
   http://journals.lww.com/rapm/Citation/2 ... e.393.aspx
2. Inferior Hypogastric Plexus Block: if anyone have experience it would be appreciated to share the experiences.
   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3259136/
3. Intraprostatic Transurethral Botox Injection : there are some papers that shows efficacy of intraprostatic Botox injection, but I have not had any feed back from the patient up to now. If anyone have experience it would be appreciated to share the experiences.
   https://pubmed.ncbi.nlm.nih.gov/25307409
4. Focus Shockwave therapy : EWST (electro corporal shock wave therapy) and (Focus Shockwave therapy) are two options: if anyone have experience it would be appreciated to share the experiences.
   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4115342/

If any one has questions its my pleasure to share my experiences. Sorry my English is not good, I hope this post can be beneficial for others, waiting for your feed-backs.

Chriss

Forget about all those treatments, they won't help you imho. Stress started these things for you and is keeping them alive. There is actually nothing wrong you, it's only a manifestation of stress in your body. Please read the last few pages here on the forum, it's been discussed quite frequently lately.
Check these 2 threads:

https://ucpps.men/forum/vie ... =37&t=8416
https://ucpps.men/forum/vie ... =37&t=8611

@ Carbonevo; you are right, all of my symptoms occurred due to stress and anxiety, I'd met a Psychologist, he said that in psychosomatic problems stress and anxiety make some problems, inflammation, damages, and in treatment approaches both mental and physical aspects, for example when we want to treat a person suffer stomach ulcer which caused by stress and anxiety first of all ulcer in the stomach to be treated and with this procedure anxiety and stress to be treated simultaneously.

We have similar case in CPPS, both aspect of physical damage and stress issues to be considered,

In my case I have prostate inflammation , and urethra strictures (two split urination) ED, and libido problems caused by chronic anxiety and stress, all this physical aspect to be treated while the stress and anxiety is treating, also in Wise Anderson protocol two approaches of physical therapy and relaxation considered as a protocol based on the concept a.m.

Your advices is beneficial for my case in stress and anxiety aspect , and I'm going to evaluate and find physical treatment method too,
Regards

Let's stop here a bit ... if there is tissue damage it must be physically addressed no mental work will help you with that. Once the strictures are resolved you can attack the mental side of this disorder. Just as in my case I suspect that a kidney stone started this vicious cycle.

Thing is the majority of people here don't have any clear physical damage and despite that have suicidal pain.

Regarding the prostate inflammation it could be caused by those strictures due to urine retention into the prostate or tense pelvic floor. ED is mostly psychological... although the inflamed prostate could contribute to that as well. Good luck man :)

Let's stop here a bit ... if there is tissue damage it must be physically addressed no mental work will help you with that.

I agree. My CPSS has been exacerbated each time by a tightening of the bladder neck due to tissue growth. I'm not saying that this will be the case for you, but it's something to consider.

carbonevo wrote:... Just as in my case I suspect that a kidney stone started this vicious cycle.

Urologists usually can verify the kidney stone and roll out it easily,

@carbonevo: Thank you for your advice, I have done the Ezer protocol mixed with Dr Wise relaxation. It works for me about 10% ! The pain, itching, and ED-libido improved during last two days, it was very fantastic for me, I'll go on the relaxation more and more and I will be evaluate the urethra stricture.

A question: I have two split urination in two case 1-after ejaculation, And 2- in start and finish of urination (when the urination pressure is low).

The question is: How can I find that this split is due to fibroid stricture (tissue growth) in urethra or is due to prostate and urethra inflammation? Or is because of malfunction of pelvis floor in relaxation function (specially after ejaculation) ?

Sleeper Service wrote:My CPSS has been exacerbated each time by a tightening of the bladder neck due to tissue growth.

How did you get that tightening of bladder neck due to tissue neck exacerbated your symptoms? What was your diagnosis method?

How can I find that this split is due to fibroid stricture (tissue growth) in urethra

Cystoscopy

Chriss wrote:

Sleeper Service wrote:My CPSS has been exacerbated each time by a tightening of the bladder neck due to tissue growth.

How did you get that tightening of bladder neck due to tissue neck exacerbated your symptoms? What was your diagnosis method?

The first time just because that's the way I was born. The second and this time from tissue regrowth (possibly scarring this time though). Original diagnosis was by cystoscopy and video urodynamics. The latter is absolutely essential and anyone with similar symptoms should not consider surgery without it.

Surgery has resolved my urinary flow issues twice. However, both times it has taken my CPPS the best part of a year to calm down - although it got a little better as each month went by - so, to be clear, surgery will not resolve pain and irritative symptoms in itself. For me it fixed the underlying issues leading to the pain and irritation, which then resolved over time with exercise, relaxation, the right supplements, and de-stressing.

Paradoxical Relaxation + Ezers advice's → 30% Improvement in 5 Days !
At the moment I'm in steady state but hopefull for future,
Thank you again Carbonevo

webslave wrote:Cystoscopy

Hi Mark, frankly speaking, I'm afraid of cystoscopy due to probably side effects, I don't know I'm right or not but I suppose that damage or micro damage of urethra can be happened in cystoscopy and lead to ulcer →fibroid tissue→ urethra stricture→reflux of urine →CPPS worsening→ .... ?
I have not credence to urologists in CPPS,

What's your recommendation? Do you recommend cystoscopy for me, or are there another approaches such as urethrography or something like that in which no direct contact to urethra needed?

Thank you in advance

I would keep going the way you are, and only get a cysto if the split stream persists in 6 months.

Keep with the relaxation and Ezer's approach.

You need to attack this disorder from 3 angles:

1. Stop fearing the pain and being pre-occupied by it, the pain serves as body's protecting mechanism against stress and negative emotional load. Its hard... Very hard to not give into the symptoms but if u manage to stop the fear, the pain will be gone for good. (unless those strictures contribute to the pain, but given the fact that your condition improved.. Maybe they are of no significance). In order to get a better idea about stopping the fear of pain watch Alan Gordon's interview I posted here. Claire Weekes also wrote a book about this.. Its a perfect book.. The audio version is even better
2. You need to teach the primitive brain that its safe out there... You are not endangered. Alan Gordon told me the pain is only a barometer how safe your primitive brain feels. Teach it that those emotions/stress are not dangerous and it will not produce any pain. Here comes Ezers approach.. Keep practicing it daily.
3. You need to move on with life as if absolutely nothing was wrong with you. It's basically another way to communicate to the brain that its safe out there and the pain-distraction strategy is not working.

Last thing: expect flareups... Apparently they are a normal part of this process.. Mark posted few days back a graph how these flareups over time reduce. Just don't despair when they come back.. I know what I'm talking about.. The worst thing is when u despair and return back to googling analyzing and doubting. I still suffer with those.. And that's the worst thing you can do

Hi Friends, I'm on flare up mode since 26th Dec. now.

I'm reading Dr Sarnos books and watching his videos too, this flare up is more painful and disappointing compared to previous ones, I cannot understand why?! My experience about last recovery by Ezer's advice and relaxation was good and it seems after flare-up is proportional to recovery period!

It seems relaxations and emotional work doesn't work in flare up, its very disappointing for me, I'm doing whatever I think is beneficial but no improvement! This flare up seems too severe, I'm going to go for Internal PT tomorrow,