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Chronic Pelvic Pain Syndrom (CPPS) for 8 Years!

Discussion in 'General Discussion Subforum' started by chriss03, Apr 16, 2018.

  1. chriss03

    chriss03 New Member

    Hi All,

    I have CPPS since 8 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.
    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.
    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.
    Now I know that the problem is emotion and anxiety or fear related problem and i convinced due to lots of suppresed fears and anxiety all this stories happend. im struggling to find the soltion.
    Sextual problems caused that I prevent to have relation with girls, having sex is awful for me. Sxtual problem is very frustrating and scared me about future.
    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.
    It Would appreciated to share any similar experince or recomendations or support here

    Good Luck
  2. Time2be

    Time2be Well known member

    I think you are at the right place here. There are many men here with CPPS. And many healed from it. It seems to me that the doctors tried different things without knowing the course for your pain. You have yourself the intuition that all this might be psychological. I would recommend to read one of the books about TMS (e.g. by Dr. Sarno or Dr. Schubiner). You could also the recovery program by Alan (link at top of this page).
    And I would be very reluctant to try any new medical treatment.
    When I read your story I get the strong feeling that you know the answer.
    chriss03 likes this.
  3. chriss03

    chriss03 New Member

    Thank You Time2be
    I think i found the answer, but im very exhausted and frustrated. 8 years struggling with CPPS is too long time...BTW it seems no way just to proceed with TMS concept... i count the seconds to heal,
  4. Time2be

    Time2be Well known member

    You should not expect that it is a quick fix to heal TMS. Because it is psychological it takes some time. And you will have relapses. Basically it is not only about not having pain but to learn how to live ones own life in a better way. Good luck!
    chriss03 likes this.
  5. Mary80

    Mary80 Peer Supporter

    Here I'm...
    Welcome at the right place..we are many here! I am suffering from pelvic pain and vulvodynia and sex is painful for much more than 8 years.
    I understand you very well. I also have other problems but these I'm talking about are more similar to yours. I did a lot of medical treatment and nothing has worked.
    Now I'm following this forum and unlearnyourpain and I'm reading about TMS.
    chriss03 and Time2be like this.

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