28 yr old male CPPS?

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Hi ,I'm a 28 year old guy never had any medical issues before last year,one day out of the blue I noticed I started to urinate frequently this was quite weird for me I was going maybe once or twice in a hour but interestingly I have never had issues at night..this carried on for a few days until I went to the doctor who did a urine test which came back normally but it did have traces of blood but he said it wasn't a big deal..anyway a few weeks went by and this annoying urge wasn't going away so instead of waiting for months through the NHS I went to see a private uro he checked everything out and said it seems like it's OAB told me to retrain my bladder and sent me on my way so I was in process of retraining my bladder when I started to feel a discomfort in my left groin meanwhile I had a blood test which came back as 28mm ESR which meant immflamtion in the body I went back after a week for a repeat test which again still showed raised ESR because it was on the lower end they didn't think much off on my follow up app with the uro I discuss this new symptom with him and he did a prostate check and diagnosed me with prostatits so he wrote up a few meds antibiotics and Advil took them for 14 days but no luck I went back to him and he prescribed flomax which had a awful side affect..seen as I wasn't getting anywhere with this uro I saw 2 on the NHS both useless in that time my frequencey has more or less evened it self out but I've had ultrasound ct scan prostate checks MRI and a cystocopy again all test negative this is really after affecting my life and it's also stress my wife out to see me in a mood.the medication they have put me on is amtrip 50mg and lycria 75 day n night.my main symptom now is discomfort in the groin area which gets relived by urinating I normally go 4-6 a day I can sleep through out the night..my GP is a good man but we are both getting frustrated..the last time I saw a uro again private money out my own pocket was suppose to be a specialist on urological pain syndromes I showed him my file with all the tests and results I told him about my pain/discomfit which is like somtimes has a tingling feeling which goes all around my groin scrotum and inner thighs and makes everything feel senstive and once I urinate I get relive until it starts to happen again after a few hours he again did a prostate check which he confirmed was fine and I did not have prostatits he said my symptoms are musculoskeletal/nerve issue and that I should go n see a physiotherapist.i did exactly that saw a specialist in pelvic floor who said I had tight pelvic floor muslces and my lower body was out of anliment and she will be working on this tbh I haven't got high hopes seen as nothing else so far has worked.,if u are still reading this I thank you and I honestly hope you can help me find some relief thanks S

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  • Posted

    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.

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    • Posted

      Hi Norma thanks for the reply I've had a MRI done but I don't know if it was specifically for PNE when I did ask them about this they said they couldn't see anything.yes NHS have truly let me down I work 48 hours a week and pay my tax but seen a specialist they seem so disinterested anyway good luck and please let me know your outcome
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    • Posted

      Please don't sit back and do nothing,if you've got any concerns about your health,you push for whatever it takes.  I could write you a book on the screening I've had to do for my health.

      April this year my hubby was diagnosed with prostate cancer ( no worries it's under control). But the problems we've had with his treatment are unbelieveable,actually I don't think anyone does believe us.

      As I say it's your health you look after it,get it sorted.  You take care.

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    • Posted

      Thanks again norma...it just baffles me how one day I'm fine happy normal and next day I've got somthing which has really dampened my life the symptoms had a sudden onset and now a whole year later I still have them..I'm not sure seeing another urologist is gone do any good I'm gna stick with physical therapy and see what happens from ther..anyway hope ur husband is doing well
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  • Posted

    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.

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    • Posted

      Thanks John for your reply and I am glad u have your quality of your life back.when I first started to take elavil it was 10mg it worked well for few weeks then started wearing off so they upped the dose little by little and now I'm on 50mg..I don't want to go off maybe the pain might be worse if I don't take it...my pain is not excruciating but its more of discomfort which gets relived once I void when my symptoms started spontaneously last year October I was frequently going maybe 8-10 a day but no pain but over time the frequencey is back to normal 4-6 times but I have the discomfort in the groin/scrotum also tingling feeling which comes n goes in contractions which is not going..my GP is saying maybe give it time it might resolve on its own.
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  • Posted

    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

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  • Posted

    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
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    • Posted

      Cant say yours sounds typical ic, and it does affect some men, but after reading posts last night, seeing one about various nerves l did look it up on this site, and some of info sounded much like your symptoms, re discomfort tingling in groin area, re pressure or trapped nerves, so many in pelvic area, l started by checking out pudential nerve and it leads to others, complicated but worth looking at and reading up on, but hope your pelvic expert can help. 
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  • Posted

    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
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