Chronic pelvic pain syndrome (CPPS)

Posted , 9 users are following.

This discussion is aimed principally at men who experience pelvic pain, often diagnosed as prostatitis or as chronic pelvic pain syndrome. The urologist I saw at the onset of the complaint explained that it is hard to treat because there may be several causes.  Once bacterial prostatits has been ruled out (apparently that is the easy part!) urologists are left with few proven methods of treatment.

The symptoms are severe continuous pain in the groin, and/or penis, worsened by sitting and by any kind of stretching of the groin area.

I was treated by a daily dose of tamsulosin, intended to relax the muscles of the pelvic floor.  In my case it had little effect.

What has helped to reduce the pain almost to zero has been a low dose of amitryptiline. Amitryptiline was first introduced as an anti-depressant at high doses like 150mg. At some stage it was discovered that it eased pelvic pain but in very low doses. My GP had attended a conference and spoken to urologists who advised him to prescribe this drug.

You start at the low dose of 10mg once a day and give yourself time to adjust to any sleepiness effects it has on you. I found that by taking it at about 8pm and after getting used to it, there were no unwanted effects the following morning. For me the level of dose which has worked best is 20mg each evening.

Now I can sit on any chair and carry out activities which pain prevented before.

I no longer need tramadol or indeed any other pain killers. In any event, I discovered that most hardly work for pelvic pain.  Amitryptiline, I am told, affects seratonin production in the brain and suppresses pain triggers from the pelvic area.

 

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  • Posted

    Jonh, this is an interesting post. Thank you. The pain of CPPS is nortoriously difficult to control. You have been lucky in two respects. First of all you found a doctor who actually diagnosed your problem. You would be amazed at how many doctors do not even acknowledge the existance of your condition. And secondly, your were eventually given a treatment that worked for you. Thanks again.
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    • Posted

      There were some false starts that I missed out Andrew. The first consultant told me it would wear off over time. Of course it didn't. I tried Prostabrit, which one trial appeared to suggest might work. It didn't. Then I sought out a urologist someone had recommended. He eliminated various possible causes - bacterial prostatitis, prostate cancer and bladder issues. He told me that urologists have been finding that their methods of treatment of CPPS were being disproved one by one. All he had left was the alpha blocker tamsulosin.

      So I was on that for two miserable years, quality of life severely affected.

      I mentioned the whole thing to a practice nurse during a routine health check at my GP. She suggested I see "one of the younger GPs". Luckily this was the man who reported back from a conference and prescribed amitryptiline.  It has been transformational and my hope in posting this is that others may read it and have a similar result.

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    • Posted

      I was recently diagnosed with chronic pelvic pain myalgia and I can't sit or stand for long periods without being in severe pain. I'm also severely constipated all the time, so I can't pop pain pills like candy or I end up stopped up. I'm seeing a physical therapist who now wants me to also see my gp a d get an x-ray done of my back since I've got severe atrophy of my right buttock. This has been a living nightmare that I can't wake up from. My wife and son don't understand and think it is all in my head. I told my wife I don't know how much longer I can go on working because of the pain I have to endure everyday I'm at work. She now hates me and says it's all in my head. My 14 year old son won't even look at me. She has said she hates me by the way. She said if I lose my job and had to go on disability, she would leave me in a second. Honestly, I think she is already planning on divorcing me anyway. I am so scared of losing my wife, a good job, and life as I've known it for 15 years. I might have to go live with my parents with no insurance until I can apply for Obamacare. Everyday I feel like killing myself honestly. I ask why did this happen to me everyday? I was living the dream for the most part until this hit. I've had it for about 6 months now and it doesn't seem to be getting better. It seems to be getting worse. My wife gets mad at me for seeing any doctors too. She says it's in my head and I don't need to see any doctors. My psychiatrist actually had the balls to tell me it was all in my head too. To say this is one of the most misunderstood conditions is an understatement. If this doesn't get any better soon, I might be putting one in my head. I can't take losing my son and wife and my job all at once. I'm in the states by the way. Getting disability I've heard is a challenge anyway for our condition, so don't know how that will play out anyway. I don't want to live my life with my elderly parents, on disability if I can even get on it, with no health insurance. I don't know what I'm going to do with my life, but I know I can't keep going on like this right now. I can't even go anywhere for the pain. The only way I get comfort is by laying down in my bed. I'm a @&#* invalid at 40. Maybe my wife is right in hating me. I'm worthless now as she put it. I'm going to die alone and miserable unless I take care of things myself and end it. My wife and son are going to leave me anyway. I don't want to die alone,but might not have a choice unless I end it before those day ever come around.
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    • Posted

      Whatup,

      I know where you are coming from. I will pray for you.

      The pain is SO severe but the person appears normal. It is not in your head; the pain is real.

      I am sorry your wife is not understanding, as this probably makes it worse.

      The only things that seemed to help me is antibiotics (multiple courses) and Elavil (amitriptyline). Also, avoiding alcohol as much as possible.

      I wish you luck. BTW, I am a doctor--we were never taught much about CPPS. I never even heard about it until I got it. It is the worse pain I could have imagined!!

      Good luck to you my friend. Stay strong for your son.

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  • Posted

    Hi John, I am suspecting myself having CPPS sad. I went to several urologists and they have found nothing wrong with me.

    These are symptoms I am suffering from for about 5 years :

    1-Urgent need to pee every 20 min

    2-Difficulty in starting pee

    3-The urine flow is hesitating and very weak

    4-Lower back pain

    5- Severe pain in the pelvic area

    6-Pain in knees

    7-Severe pain after ejaculation

    8-Discomfort between testicles and anus

    9-Sitting is not comfortable.

    Can this be CPPS, if so what should I do?

    Thanks in advance.

     

     

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  • Posted

    Hi mohamed77139

    All I can suggest from my own experience is that you ask your doctor to prescribe amitryptiline as 10mg tablets.  It doesn't work for everyone but with this condition we will try anything!

    It is important to start with a low dose, one tablet, taken at about 8 in the evening.  At first it will make you sleepy, but persist because this effect gets less as you adjust.  Take that dose daily for, say, two weeks.  If it isn't easing the pain then step up the dose to two tablets, that is 20mg daily, also at about 8 in the evening. Carry on this process gradually increasing dose.

    Amitryptiline is an anti-depressant originally prescribed for depression and given in high doses.  In high doses it can be addictive, but not in doses up to about 50mg.

    Obviously you should check with your doctor that this drug will not interact with any other medications or be unwise because of anything else in your medical history.

    Good luck. I hope it works.

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  • Posted

    I will second John's suggestions again. I am feeling much better on low dose Amitriptyline 25mg at night as needed. Ky symptoms would come and go, but the addition of the Amitriptyline has helped immensely.

    Mohamed, there is hope as I had very similar symptoms and all my tests were "normal". If all diagnoses have been excluded for you, CPPS is most likely. It is, for lack of a better description, a very BRUTAL condition.

    I truly wish you luck. I hope you can get some bormalcy back in your life.

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