I am hoping to discuss with others my diagnosed condition of acute prostitis/chronic pelvic pain

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My problems began nearly 9 yrs ago. I had lower abdominal pain, pain on ejaculation, testicular pain, pain and burning when urinating and pain in the tip of my penis. The symptoms worsened over time. There is no respite and even certain types of underwear are difficult to wear causing aggravation. I have had varying opinions from Doctors and Consultants causing me more frustration. Suggested treatments have included drug prescriptions and even anti-depressants (which I have avoided). I have been treated at a local Pain Management Unit and undergone various tests, including injections and a scan. I was recently informed that although procedures had been exhausted, nothing more could be done. I was advised to make my own enquiries and this led me to this website. I am anxious to discuss with others who have experienced a similar plight in order to find anything which could ease the pains. Thank you.

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  • Posted

    I to have struggled with the pain for 3 years. My first year and a half was the worst. My doctor finally figured it must be a nerve condition and prescribed ami-triptoline. She worked me up to 50 mg and said if I really thought you were mental it would be 300 mg. All that this does is relax the muscles. Although I am not crazy about taking medicine after about a month it began too feel a little better.

    I also found the following helps as well:

    * loose underwear and pants

    * when I drive I un-do the belt and loosen the pants

    * also sleep with a heat pad in the area, not all night but for a couple of hours.

    * I found stretching exercise help a lot, especially for that area.

    I also went to a clinic in California, it was by a guy who actually had the condition for many years. He does a good job of explaining the condition and his research. I am not promoting him, but it did give me hope. He goes into how it is a muscle issue, which doctors have a hard time treating.

    Here is the title to the book he wrote':

    A Headache in the Pelvis, a New Expanded 6th Edition

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  • Posted

    Hi...thank you so much for your reply to my comments. I just wondered if you have tried Reflexology and wondered what your feelings were on this subject. Also, have you ever tried any natural substances such as plant minerals (not vitamins) ? Have you any thoughts on Physiotherapy or Chiropractic help? I am so grateful for your input and look forward to hearing from you again. Thank you so much.....from Philip
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  • Posted

    No, I have not done that but have tried myofascial release, which is a total body massage. I did this once per week for about 3 months. To tell the truth it did not do much. I found heat pads and sleeping on a heated mattress was doing more.
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  • Posted

    I started to suffer with the same symptoms at the beginning of last year. My GP's didn't have a clue what to do with me as all tests for infections kept coming back negative. Out of frustration I referred myself to the sexual health centre in Bristol and was diagnosed with chronic pelvic pain. I told it's almost always triggered by stress but couldn't believe stress can cause those kind of symptoms. It took about another 10 negative tests and numerous doctors raving about how good the diagnosing doctor was to begin to believe the chronic pelvic pain diagnoses was correct. Once it was clear to me it wasn't caused by a raging infection I managed to track the trigger back to stress at work. Once you understand the cause and the mechanism that causes the pain, the distressing part of the pain disappears.

    I've tried a lot of natural remedies but none of helped. I'm now on 25mg of Amitriptyline and 600mg of Gabapentin which has taken almost all the pain away. I'd recommend discussing both drugs with you're GP as they have really helped me and the pain no longer rules my life.

    I'm concious that the drugs only mask the pain and don't actually fix the increased pelvic tone issues. My diagnosing doctor is referring me on for physio and is hopeful that it will fix the underlying cause.

    I'd recommend booking an appointment with Dr Horner at the Bristol sexual health centre on his Tuesday clinic. He really is an expert and I feel extremely lucky to have accidentally found him early on. He'd also be able to write to your GP with the correct advice so they can help manage the condition appropriately. Well worth a day trip if you're miles away.

    Hope this helps!

    Mike

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    • Posted

      Pat,

      From what I have found the Kegels are the wrong thing to do.  

      What has actually happened is that your muscles in the pelvic region are now tight.  Like that of a muscle cramp.  Stretching is what you want to be doing.  There are a few things that I do that tend to help.  Although this is just what I am doing and if you come across anything else that seems to help continue to do it. 

      1.     Lay flat on the floor face down.  Extend your arms from the floor so your back is arched.  This will start to stretch your core front muscles.  I also like to do a bit of a twist for about 10 to 15 seconds to either side.  You should feel your muscles stretching.

      2.     Lay flat on your back with your but about 6 inches from the wall.  Put your legs up against the wall and then split the legs as far apart as you can.    Do this for about 30 seconds to 1 minute.

      Try these for a while.  There are some others, but see what works for you.  The big thing to keep doing is stretching the muscles in the pelvic region.  Since it is a bowl of muscles going in all directions.  It will take some time and various stretches.

      Good luck and let me know if you have any other questions or suggestions.

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    • Posted

      Hi Mike,

      Diagnosed with CPP about a month ago, but been suffering with it badly now for about 6 months.  

      I found your post extremely encouraging.  I don't think my eurologist has a clue as they are currently treating me for prostatitis, and yet apparently the prostate upon examination appeared normal and not enlarged and no infection that they could find.  Nevertheless they prescribed a months worth of anitibiotics which seems like a waste of time if there is no infection and Tamsilosin, which relaxes the prostate, which again seems strange if the prostate appears normal.

      I note that your post was over a year ago now - do you mind me asking how you are now and if the amitripyline and Gabapentine are still working for you and also how you got on with dealing with the underlying pelvic tone issue with the physio as i am contemplating doing the same thing.  I would be ever so grateful for your comments Mike :-)

      Dr Horner sounds brilliant - I live in Southend, but if i don't get anywhere fast then i will certainly consider going to Bristol.

      I am also looking into accupuncture, which the lady said she can help CPP by blocking the pain of the inflammation of the pudendal nerve at the joint it travels through / from in the spine - like the meds you mentioned, it will only mask the pain, not cure the cause, but that would certainly help to start with.

      Mentioned to Richard as well that sitting on a rubber ring really seems to help too.

      Would be so grateful if you could let me know re the questions to the meds and physio above - kind regards.

      Rob

      P.s. so pleased that your pain at the time of writing your post, was so much improved Mike

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  • Posted

    I need firstly to know whether Philip is still troubled by chronic prostatitis as he posted his problem more than a year ago. If so I am ready to offer some help and advice as I have had the chronic condition for many years and have learned how to live with it!
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  • Posted

    I am sorry to learn of your ongoing problems. I cannot offer any real help as prostatitis which becomes a chronic condition for a few unhappy people, myself included, is a life changing condition which is not properly understood even by doctors. It has to accepted and is often incurable. I have found during the past twenty years that Amitryptiline 50mg taken nightly helps and in recent times in addition, 4 X 100mg capsules of Gabapentin throughout the day seems to give added comfort. 

    Hope this helps!

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  • Posted

    Prostatitis, CPPS, PNE

    I am a 60 year old male and three months ago I was diagnosed with Prostatitis for which a month’s course of the antibiotic Trimethoprim was prescribed and taken. Towards the end of the period of medication it was becoming clear that the drug was having little effect. It might have made the urinary tract feel more comfortable but the major discomfort in the perineum remained.

    My symptoms were ‘typical’. Great discomfort when sitting (except on the toilet) with the pain easing upon standing. They rarely caused sleepless nights as lying prone was more comfortable than sitting although a little pain was still noticeable. Having said that there was usually a point overnight where the sensation of fullness in the bladder necessitated a trip to the toilet. Other symptoms included a sensation like cystitis, fullness in the digestive system, pain in the kidney areas, pains down the inside of the thighs and a few times a stinging sensation in the scrotum.

    During the initial medical the Practitioner performed a Digital Rectal Examination (DRE) of the prostate. I had expected to go through the roof with pain but there was the first surprise. The prostate gland was ‘normal’ and the DRE was painless. To me this seemed an inconsistency. More followed. My immune system has seemed absolutely fine and the only infections I have ever suffered over my career as a science teacher have been an annual cold and a small number of bouts of ‘flu’. Age apart, my lifestyle equally makes infection a low risk.

    Inevitably in this information age we turn to the internet for answers and here again more inconsistencies became apparent. What exactly is Prostatitis? With perhaps fewer than 10% of cases having a clear microbial diagnosis it seems that the remaining 90% or more have very uncertain cause including vague pointers to unidentified microbes and the preferred renaming to ‘Chronic Pelvic Pain Syndrome’ (CPPS). However there is more recent thinking that for me, started to make a huge amount of sense. There is a strong movement suggesting that these symptoms are caused by pelvic instability and such instability has a likely origin in physical damage in the past plus tension and poor posture up to the present.

    Up to retirement I had fewer than ten periods of absence from work. Most were for a day or two but one was for over a month. It was due to a lower spine injury that ended my 25 year career playing rugby and left me continually prone to back pain. For me retirement brought much more sitting than I was used to and often with poor posture. Add in tension of working/playing for long periods at a computer and it is easy to conceive that nerves become agitated and muscles put into spasm.

    In my case I have suspicion that the damage is to the Pudendal nerve. I understand that it radiates to all the areas that have caused my symptoms; that it originates from the region of the lumbar vertebrae and passes near the sacroiliac joint which can be a point of compression during poor posture. I don’t necessarily believe I have pudendal nerve entrapment (PNE) but the symptoms are very similar. Apparently, rectifying this condition isn’t straightforward and seems mainly reliant upon lifestyle changes with possible help from physical therapy (and maybe less conventional medical approaches). It is understandable why antibiotics are used as a first line therapy. Prostatitis/ CPPS/PNE symptoms really are like those of an infection without any external signs. Antibiotics have some analgesic effect. There may well be urinary tract infection (UTI) in addition. However, that UTI in my case I strongly suspect was a secondary consequence of ‘Prostatitis’ not the primary cause of it. Many sources indicate that the muscular spasms in the pelvic floor might well cause constrictions of the urethra and subsequent pooling or backing up of urine. This in turn could become a site for infection.

    This theory is all very well (after all I have no qualifications in medicine)  ... but for the practical application. Only a few days ago I was in poor health with this ‘syndrome’. Through some lifestyle changes that I have made since, I no longer feel so ill and I believe that I am on the road to a vastly improved situation.  With the aim of getting more stability and less inflammation in the pelvis I spend long periods lying flat on an exercise mat on the floor. I absolutely avoid sitting. I made no changes to my exercise routines, swim a couple of miles a week, walk my dogs a mile or two a day and otherwise live normally. I am fortunate that retirement gives me those opportunities. It would be a serious challenge to getting better if I had a desk bound job.

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    • Posted

      Richard,

      I hope you were able to read the information that I posted above. In short you are on the right track.  I have had this condition for 4 years now with it gradually getting better over time.  I now feel about 98% back to normal, but it took a good amount of understanding and time.  In short the following helped me:

      -  25 to 50 mg of Amitriptyline - Take before bed, you will sleep deeper without the after affect int he morning.

      - Streching the region.  You can go to a physical therapist, but musles take time to stretch.  It is best if you do it about 3 times a day and after long periods of sitting and/or standing.

      - loose pants around the waist.  For me this is a trigger.  When the pants are tight around the waist it triggers the pain.  I have switched to lands end comfort fit.

      - Limit the abs workout.  You are actually tightening the musles you are trying to stretch.

      Have any questions let me know.

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    • Posted

      Many thanks Shug. Yes I have read your advice, I shall do more stretching. Just by chance I was finding that was giving some relief.

      People's support in all of this is encouraging.

      R

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  • Posted

    Hi all, just diagnosed with CPP after having the pain for 6 months.  

    I was originally prescribed a course of antibiotics 'before' i was tested to see if there was a water infection, so i cannot be sure if it was caused it, but suspect like richard77 it was caused by trauma - compacted lower vertabrae obtained in a bike accident several years ago - ever since then i noticed a significant reduction in urine flow, so suspect all related.

    I just want to thank all the marvellous posts on this board - I have felt so isolated as noone seemed to be able to offer any good advice or much hope of relief.  I am usually a very positive person, but the constant pain 24/7 - even inn the night, has worn me down over the last few months to a point i am terribly ashamed to say, had me questioning for a short while whether or no i could see myself carrying this on indefinitely.  Has anyone else ever had moments like that or is it just me?  Anyway, i have 2 super kids and a wonderful wife, so it's not even an option.  So have decided to conquer this instead!!!!

    Finding this board has been the lift i was looking for and really got me focussed on something positive and i no longer feel on my own.

    Some great advice from heated mats to books on the subject to meds that seems to actually help!  Brill.

    So far I have not been given any meds other than anti biotics, but the eurologist has recommended my GP start me off on 'alpha blokers' such as Tamsulosin, possibly with the addition of NSAIDs.  However, from what i note on here the drug thats seems to have helped the most is Amitriptyline.  I did read this somewhere else too - Can i ask has anyone taking this suffered any significant side effects?  I note you mentioned richardd77 that you take it ust before you go to bed to reduce the symptoms?  I have heard rumours that it can mess with libido / ED (is it still possibe to have a good sex life whilst on these?...sorry to be so personal) as well as give a very dry mouth and constipation?

    Ok just to add something that might be useful to others in return - I read that latest research into CPP speculates that accupuncture could offer real relief.  I contacted a local accupuncturist who said she helped pregnant ladies with CPP to great effect, but was confident that she could also help others, both male and female as the basics principles of treatment were the same.  She said all the right things, i.e. that the sacroiliac joint was the area to concentrate on (coincides again with what you were saying richardd77 :-)   and also mentioned that she combines accupuncture with cranial massage, which apparently works on rebooting the whole nervous system. She was very confident that she could get my symptoms under control with just 4 weekly 1 hour sessions, combining both therapies and then just the odd follow up session appointment - around 1 every 6 weeks to sustain the improvement.  Wow!  She is booked up for the next month, which i actuall found very encouraging.  I will of course let you all know how it goes.

    If anyone in the mean time could answer the questions on the meds i would be very greatful.  Once again THANK YOU EVERYONE for the informative posts - i cannot tell you how much this has lifted my spirits.

    Rob (Southend on Sea)

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    • Posted

      P.s.  Great to hear that so many are doing well now!  Richardd77....98% improvement!  Thats brilliant - really pleased for you :-)  I would definitely settle for that ;-)

      Rob

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    • Posted

      Hi I too was diagnosed with cpp. I also live in the southend on sea area and have an appoinment booked for cranial therapy in just over a weeks time. I've had to wait four weeks to see her too. I'm interested in the fact that you are having acupuncture along side the cranial therapy. I've not spoken to the lady so not sure what treatment she will suggest for me yet. I too have felt isolated it's not easy to find people who really understand what it's like to have a condition like this. It's was nice to read this forum as many people are positive and have had good result. 

      I have taken amitriptyline before the dry mouth past after a few days I did have trouble with constipation so if I took again I would take something to avoid this. Taking it at night time helped with the tiredness I didn't have any other side effects. 

      Rob

       

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    • Posted

      Hi Rob - It's a small world!  The lady I will be seeing for cranial therapy and accupuncture combined is Lorna Withers in Leigh on Sea.  I have delayed seeing her as following a terrible week, i have had a much better couple of days since and want to see how things pan out a little longer.  

      As a clinical Hypnotherapist and psychotherapist, i recognise that I did exactly what i tell my clients not to do - PANIC!  I already read that stress and anxiety exaccerbates the condition and now i think i understand why.

      Stress and anxiety tenses your muscles and CPP, from what I am learning, is often linked to the pelvic floor muscles tensing when they shouldn't, to a point that it creates the discomfort and often pain that we feel with this condition.  This in turn creates more stress and negative anticipation, tensing the pelvic muscles even more and its just one big viscious circle. The bit i'm not sure about is where the pundendal nerve comes into the equation??  Maybe chronically tensed pelvic floor muscles put undue pressure on the nerve.....?  I'm sure there must be some link there as the pain often radiates to tip of penis, thigh's etc, which is linked to nerve damage if no infection.  Not sure.

      Anyway - on Thurs as I sat there not knowing what to do with the constant pain, i made a conscious decision to try and relax using self hypnosis and suddenly, to my relief, after about 10 minutes I felt the muscles in the pelvic floor release!!!???  The relief in the discomfort was 'immediate'.  After a few minutes the muscles automatically went back to tension mode and the pain returned.  I consciosuly tried to relax them again and it worked a second time.  I looked up, stretching and relaxing pelvic floor muscles and found a useful page.  I have found they also help relax the muscles in the region.

      It's early days, but i am hoping with a combination of self hypnosis and physical relaxation techniques as above page, i will be able to retrain the pelvic floor muscles to relax at will - psychologically, just to know that it 'is' actually possible to get relief is a huge gain and massive step forward.  

      I believe that the condition can be caused for several reasons, but suspect that 2 of the main reasons are: 1) trauma to the area, as likely in my case and richardd77 was saying the same, 2) long periods of stress and anxiety (or both).

      Rob you mentioned taking the amitriptyline - have you found that its helping? Glad the side effects havent been too bad.

      Let me know how you get on Rob

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    • Posted

      Hi 

      I am seeing Karen Revivo from the life centre for the cranial therapy. By the looks of it Lorna Withers works there too. I just booked an appoinment as something to try. I was told it helps with relaxation and anxiety. 

      It's great to hear that through your relaxation techniques you have some relief to your symptoms I am yet to find something that works in this way. 

      I took amitriptyline about 8months ago I only took it for a short time as I had been on a cocktail of tablets and decided I wanted to come off of them all and give my body a break. I have since found out that I had been wrongly advised on how to take the amitriptyline so don't think I got the full benefits of the drug. I am considering trying it again but for the moment I am trying out therapies first. I was told to take it as and when I needed it but was told recently that it's doesn't work like that, it has to build up in your body and I should have been given a much higher dose than I was on. 

      Rob

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    • Posted

      Ok Rob - well let me know how you get on with Karen - I have heard very good things about cranial therapy, so really hope this helps you get the improvements you are looking for.

      Thanks for confirming about the amitriptyline - interesting.

      For what it's worth Rob, think you are doing the right thing with trying to find alternative methods to medication first to avoid all the side effects - having said that, the success of amitripyline does get a lot of positive press, which is good to know too.

      Rob

      p.s. sent you a private message with the link to exercises :-)  

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    • Posted

      Hi

      Hope you are getting on ok.

      I had the cranial therapy this week. It was totally different to what I was expecting very interesting. Still to early to say if it helps but she looked at things in a totally different way. She pointed things out I had not even thought of. I've got another appoinment in a few weeks time I will let you know how it goes. 

      Rob

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    • Posted

      Hi

      she looked into all my medical history over the last few years and noticed I'd been diagnosed with ibs a year before my Cpps symptoms started. Apparently that's common with Cpps. I am doubtful that I ever had ibs as I have not had much trouble since I think it was probably the start of this. She then asked about a fall I had a few months prior where I hurt my ankle. She asked if I'd landed on my hip which thinking about it I did. When my ankle gave way I fell down a slop into a road and landed on my left hip. It all happened so quick was walking one minute then in the road the next. It's a possibility that this caused trauma to the pelvis. It was three months later my troubles started. I had pain in my stomach and bowel which they could find no cause so said it was probably ibs. It was a year later I ended up with urinery problems and pain in my penis. I don't seem to suffer with the bowel pain these days. 

      It was just interesting as all consultants I have seen are only interested in current symptoms they don't seem to want to find out the cause or look into your recent history for any links they just give u tablets for the symptoms. Where as this was the first thing she wanted to know. 

      Rob

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