28 yr old male CPPS?

Hi This is just a thought.     I have been suffering what I have been told IBS for well over 13yrs now.I suffer what has now turned into chronic pain every day.  A man on the IBS forum told me to google the Vagus Nerve,so I did,and much to my surprise I had a lot of the symptoms that not just the vagus nerve gives, but the Prudential nerve and the Predentiel Nerve give.

(don't know if I've spelt last two right).

Now my Gastrologist has come up with the same thing.Thats without me mentioning it to him.        Next Saturday I'm having an MRI scan to check it out,so after years of suffering fingers crossed.

Check it out on google you never know.  And by the way I totally agree with you about the NHS being a waste of time lately.  Just push your GP a little harder for what you want,you shouldn't be having to pay.

Think of it as your health your right.   Good luck.

Sorry to hear of your problem.  I spent two years in severe pain trying to find a solution.  What I did learn is that urologists really don't know what causes symptoms such as those you describe. CPPS has been used as a catch-all label for a group of symptoms affecting the groin, prostate and pelvic area.  The reality is probably that several causes exist but that, so far, it has not proved possible to isolate which cause is responsible in which case.  So urologiosts go through an elimination process to rule out bladder, prostate, spine, IBS and so on.

Their problem is worse because none of the drug companies sees this set of symptoms as being a good earner, so do not undertake research.  In that sense it isn't the individual medics fault that they don't know how to deal with it.

The urologist I tried said from the start that he may be unable to cure the problem - in my case severe groin and penis pain all the time, and impossibel to sit on normal chairs.  After a cystoscopy to exclude bladder issues and prostate tests he tried tamsulosin, which relaxes muscles in the pelvis.  It didn't work, nor was there a painkiller which worked for more than an hour - that was tramadol.  I was lucky in the end because my GP attended a conference at which he sought advice from consultants and arrived at a low dose of amitryptine, which I gather you take.

However you mention side-effects and I wonder if you were started on the drug in the optimum way?  That is to start with a 5mg or 10mg dose at about eight in the evening, gradually upping the dose by 10mg at a time over three or four weeks.  This gradual start allows the body to adjust to the sleepiness it can cause.  It works for some people, not as a cure as such, but by blocking seratonin (I think!) in the brain which then turns off pain signals from the pelvis.

In low doses, that is below 150mg, amitryptiline (also marketed as Elavil) does not lead to any addiction problems, I was told.

Best wishes to you and I hope that you will find a way of easing the situation.

Interesting, replies also.  l started with frequency and pelvic pain immediately following csection, woke with catheter on, blood in it, l should have demanded to know reason, as didnt have that with lst cs, nor did other women on ward, but let it go, but from then on had frequent pain poor health, a catalogue of it over a long time, other symptoms, my gp hopeless, seems they sometimes just take a stab at what might be near, for me, post op, then gyny, hormonal next, finally phycalogical, l wasnt pushy enough, did try to find answers,wrote and visited anyone who l thought might know, no internet back then, so got nowhere, tried diets, new candida involved, some blood loss in urine, infection. Finally saw urologist had cystascope, intersticial cystitus diagnosed, inflammation of bladder, meds for symptoms, one of main ones amitrip, told it calms nerve endings in bladder, also sedative anti depressant, and reduced urine output, and it did reduce frequency and helped me get sleep, but also started on 50m which was too strong for me, left me hung over in morning, and later told you only need small dose for bladder probs, l0m, which l cut back to, also cimetidine as histamine receptor, as too much histamine as with inflammation. It did reduce symptoms 90percent, but had always got low back hip under butt pain into top of thighs,  pressure nagging pain, this has been worse again recently maybe age related, but never really given understanding about this pain, and generally poorer health since it all started. lve since thought that it must have been caused by damage at time of op, l knew l,d adhesions from lst op, but speculated there was also nerve damage, might explain catheter and blood, plus it sort of feels like nerve damage at times, jumpy legs in bed, so will def read up on the nerve problems mentioned in post response, l,m now waiting to see physio, after having had numerous scans, petscan, etc. So many with ongoing severe symptoms and no specific diagnoses. l also paid for private consultation, 2, but had picked wrong type of consultant gyny, being led by gps, luckily found decent gp on call out. But l dont think yours is ic shak, your symptoms sound a bit different, but many probs in pelvic

area but l can never recall my gp or others referring to nerve damage,

its like an unmentionable, and l imagine damage or pressure on nerves can cause lot of problems, but for some, judging by self you and others even paying private doesnt always bring thoroughness or diagnoses, or stop being fobbed off, and as someone said the bladder isnt the best researched area, rarely life threatening, depite being  known as a very sensative area prone to severe pain, i.c.  wasnt even researched in uk, the support group, c.o.b, who urologist told me about, he was ok for me, more gp slack, c.o.b, do help with info and  support, but they  referred to usa germany for new findings from research, sorry for long ramble, just relating to experiences.  Hope you find diagnoses help soon,  best wishes

Thanks for the info Lynne,U say u have interstitial cystitis what I've read on it affects women mostly but it can also effect men..I'm not sure what I have because it doesn't fit the typical description of IC or prostatits..many possibilities but still no answer

Wow thanks Lynne that's nice of you to get some info for me...I'm going to look at that closely it's still strange how somthing like this can have a spontenous onset,I will see what next step to take again if someone else has similar symptoms please share

Hi, i know this post is old but i was wondering how your urinary symptoms turned out. Did they resolve and if so what was the cause? i am having very similar symptoms and would like some advice. thank you

I am having the same type of things you have mentioned and mine extends into penis and beyond. Three years now.

Did anyone find out what this could be?

I have been googling for some time and just came across this post, I know it's old but I am going through exactly the same thing. (urge to urinate constantly - worse on some days - and through the night)

A deep ache in the prostate area that runs down to the inner thigh (high up where the leg joins the groin and only the left hand side) and a pain like someone has punched my left buttock.

I am mid 30's and it came out of no where just before xmas 2021 - like someone flicked a switch.

My GP has given up - painkillers and antibiotics for prostatitis over the course of 8 months with clear urine tests. I have now paid privately for a ultrasound which showed nothing (bladder/prostate OK) I have also just gone private for a MRI which is booked for next week..

The consultant said they may not be able to help once he has confirmed that there isn't anything untowards happening - I will update this and add any info I can as I feel completely alone on this and hope it will help others somehow.