I am hoping to discuss with others my diagnosed condition of acute prostitis/chronic pelvic pain
Posted , 12 users are following.
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.
1 like, 31 replies
richardd77 philip70411
Posted
Good to have you on board. One minor correction – it was Shug on the Amitriptyline and 98% improvement - He was replying to my post.
I equate this ailment to being like RPI (Repetitive Strain Injury) only the repetitive action is compression of a nerve or other tissue rather than motion. The first line of therapy for RPI is to stop doing what’s caused it. So despite the huge inconvenience - that is what I am doing. And gradually my situation is improving. There might well be ways to speed up the process of getting the agitation calmed but for the time being I am taking the simple route. In addition I want to get to the root cause and also avoid drugs where possible because their use must be declared to the CAA and likely to suspend my licence for flying light aircraft.
I believe I have had my symptoms for over five years but they were mild enough to make me think it was just ‘age’ and I could usually stretch them off or use warmth for relief. The cystitis like pain and pains on arousal were a puzzle but again – ‘age’. However, three months ago after sitting at a computer working under high tension for a prolonged period things took a much more serious turn. The pains were bad and mainly unrelenting – certainly when seated. The illness had more and more impact on the bladder, sex organs and even the bowel. It truly seemed like a bad infection. The antibiotics had a minor effect but as time went on there was no improvement and I was possibly heading for a dark place. Nothing I researched was encouraging. Confusion over the ailment. Rafts of tests to exclude ‘possible’ cause by microbes. And no identifiable cause for upto 95% of suffererers.
That is why, prompted by some current authoritative thinking, I believe that my version of Prostatitis/CPPS is a result of nerve damage – likely the pudendal nerve. Many women have suffered similar perineal pain. Amongst the main culprits for them is pudendal nerve damage so why not for men? I guess that the prostate gland has been too much of a distraction and labelled as the cause. To me it seems that it is just another organ that’s a victim.
I am now about a week into my ‘no sitting’ regime. I feel a hell of a lot better most of the time. I no longer take any analgesics. The bowel and even bladder are far more settled. This is no quick fix. I have times of doubt but they are becoming less frequent. And if the medical profession can offer only a 10 or even 5% chance of a diagnosis then I’m going to continue to deal with this my way for a good bit longer.
robert83348 richardd77
Posted
Not sitting down sounds like a plan - how do you get around taking time to eat and relax say with the family though - do you sit, but like on your side or some other technique?
There's no doubt though that it is invariably much better when not sitting down.
Yes, can totally understand why you would not want to go down the drugs route then. Another thing i was wondering is if losing the few extra pounds will help as well. I know it helps with so many other issues like bad back and if it is a trapped nerve etc, then i would have thought getting down to perfect weight can only help.
Kind regards
Rob
richardd77 robert83348
Posted
I had similar thoughts about weight and am in the process of shedding a few pounds. Not that I have come across anything specifically linking it to the problem but logic would say it is wise.
I do sit for meals and it’s unavoidable driving/flying. During social occasions I do what I can to avoid sitting for too long. At the moment I see these as worth the risk even if they put me back a little step. And then it’s back to the mat. I have a relatively quiet household (my wife – also early retired and two large dogs) so it is easy enough to do. Initially lying flat was extremely uncomfortable and as well as the ‘Prostatitis’ I got quite severe back/pelvis ache. But after a day or two both started to settle and I am quite comfortable. Lying on your back for hours on end is impractical so I often lie on my side. Generally the pelvis, lumbar vertebrae and thighs are straight’ish’ in line. The main guideline I use is that if I feel any sign of going into tension I free it off with repositioning and stretching. I never lie on the settee. The softness was allowing too much curvature and gave me no help.
Next week I am going to fulfil a postponed stay with a relative who lives a three hour car journey away. A month ago that was absolutely unthinkable even with breaks. As well as a self inflating seat cushion (quite good) for the journey I shall take my mat. Today I feel at least as good as I did yesterday ... and that’s after 40mins in a hairdresser’s chair! (she loves to talk).
R
robert83348 richardd77
Posted
Thanks - you've given me some more good info there to try out.
I remember going to the mother and father in laws for a fortnight and they had very hard beds - like you say, the first few nights were a nightmare, but you soon get used to it.
Talking about the self inflating cushion for the car journeys - apparently you can also get special seat rings to put on your normal seat that although when you are sitting on them you don't really see the ring, it's similar to sitting on the loo, which most agree is the most comfortable seat in the house.
One last thought for the day - if in the case where the cause is trauma to the lower back - an inversion table (traction) is able to stretch the vertebrae apart and with regular use help release trapped nerves (doesn't do much for the veins in your head though! ;-) - going to give that a try as well just incase it releases the pressure on the pupendal nerve - worth a shot.
Kind regards
Rob
richardd77 robert83348
Posted
That looks an interesting therapy and worth considering. I would definitely have tried it 25 years ago after my rugby injury. Then I tried Osteopathy and a year later Chiropracty (about 6 – 8 sessions each). It was the Chiropractor who said that posture was so important . You sort of understand it and try, but get complacent and go back to slouching in chairs. Yes, I got a ring cushion. It wasn’t great initially but I use it more now .
My apologies for my rather lengthy replies and I am grateful for a sounding board. It is important to hear people’s views and they are just as valuable whether they disagree or concur. I need to see any flaws in the thinking.
Just for information ... I feel even better today than I did yesterday :-)
R
richardd77 philip70411
Posted
I am cautious about giving advice that I am not qualified to give. I have a post graduate research based degree but not in medicine. However if the main message is ‘good posture’ then it should at worst be harmless and best helpful. The danger is that readers of this might waste time trying this approach when they actually have a condition that needs medical attention. Some might consider that self help is irresponsible and that I should be further consulting with a GP. Yes and no. If I wasn’t improving then yes I would. But ‘No’ because I believe that I am on the right track and getting Pudendal nerve damage settled needs to start as soon as possible if you want to increase the chances of healing. Severely damaged pudendal nerves are potentially unrepairable. Also ‘Prostatitis’ is poorly understood so you face months possibly years of likely inconclusive tests.
Many authorities say Prostatitis is very common and Pudendal nerve damage relatively uncommon. But some of the most recent thinking states that what is diagnosed as Prostatitis, is in the majority of cases, very likely to be Pudendal nerve damage. When possibly over 90% of Prostatitis cases have no positive diagnosis it seems very logical.
richardd77 philip70411
Posted
Just to let you know that I still follow the thread with interest. I still believe that my version of Prostatitis is like that of Shug's - damage to a nerve. It still surprises me how ill this can make me feel but I think that any relatively 'normal' pain from the digestive and urinary tract (wind, over hot curry, etc) is trebled with this condition and something that is usualy mildly uncomfortable becomes much more difficult to settle.
While I feel 'unlucky' that I have this condition I do feel fortunate that with ideas from people like yourselves I have my diagnosis and a plan to stick to. I am lucky that I can keep off the drugs and lucky too that, all be it slowly, I am improving
shak2340 philip70411
Posted
tom74837 philip70411
Posted
I have had this condition since 1997 after a bowel infection, i also lost the urge to urinate, the only sign is a throbing at the end of the penus when to pee, over the years [ 20 ] i have every test you can think of all of them came back normal i am now sat here aged 60 still in pain, mind you over the years i had nearly 6 years pain free in one go [ bliss ] because over the years all test results were normal, the doctors thought i might have a mental problem, and began not believing me, I have now given up hope, I have very good days but right now its been really bad so these are the bad days, this could go on for weeks then calm down for a few months, its a total lottery when it comes to pain, what i have found is if you think about it the pain becomes 5 times worse plus the odd few pints of beer seems to relax your inner floor area and give some short term relief, i am now retired so have more time to dwell on this bloody thing anyway i am going to have a pint of beer CHEERS