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ryan992 ryan992

Groin pain, trouble urinating, numbness/tingerling, weakness 3 years

I am now a 22 year old male. 3 years ago i went on holiday, went jet sking/quad biking and took abit of battering in my pelvis and back, ached abit and then i was fine... for about 2 weeks. Then all this started, initialy with weak urine stream, pain urinating, pelvic pain and burning in the tip of my penis. It took the nhs more than six months to get me to see a uroligist where slowly i had, ultrasounds, blood tests, xrays, ct scan and a cystoscopy to try and find the cause of pain and urinary problems. nothing was found, i became depressed and remain incredibley depressed. they finaly diagnosed me with Chronic pelvic pain syndrome to which i was given physio and relaxation technics. slowly pain improved over the corse of 18 months but i still have to live with urinary pain and weak stream. since then i have had nerological problems (tingerling in feet, genitals, burning in legs and much of the rest of my body, weaknes in arms legs) i was given a mri of my brain, more bloods, urine tests, nerve conduction studies.... all clear again. recently i have developed siatica and chronic epididymitis (inflamation in one testical) groin pain and worsening of urinary syptoms. iv been given antibiotics that have not helped along with anti inflamitory meds... nothing has helped.

Im looking for anyone with an insight or idea who could help me now.... this is my last resort and im on the edge. knowone should live like this.

any idea of where to look, what could help, what it could be, what to do now?

So far i have had:

MRI: brain. upper spine

Blood tests of nearly everything

CT scans of brain

Nerve conduction tests

Urine tests- (everytime, no infection-EVER)

cystoscopy

X-rays

I have seen Uroligists, neuroligists many times.

my current syptoms are.... pain urinating, slow and weak urine stream, constipation, pain and numbness/tingerling of verious body parts specificly the legs and feet, siatica, mild back pain, very bad groin/testicular pain, occasional weakness in limbs.

Im asking for anyone who can help me... PLEASE!!!

20 Replies

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  • john02 ryan992

    My sympathy. This is an awful condition. After many of the symptoms you mention the only thing that has helped me is when my GP suggested amitriptyline. It blocks pain signals from the pelvic area. You start with a small dose of 10mg once a day in the evening. Gradually increase the dose over a period of two or three weeks until you feel less pain. In my case 20 mg in the evening has completely blanked the pain. It was like getting my life back. You need to persist because at first you may experience sleepiness in the morning. By trial and error you discover when in the evening to take it to avoid morning tiredness.

    Talk to your GP about it. If you are like I was you will try anything! It doesn't work for everyone so good luck.

  • anthony95013 ryan992

    You poor chap - you certainly seem to be in a mess but I don't think it is all due to your holiday activities but rather some other condition not fully understood by doctors. If nothing can be found to be the cause then you need to ask your GP to send you to a pain clinic. John's answer was correct. Amytriptiline both deals with the pain and is a sedative and should be taken at night, however 20mg is not really sufficient in your case. I would suggest 50mg as a starting point. Your symptoms are very similar to my own and I had all the tests you have experienced and nothing was found. You will be surprised to learn that my problems started more than 20 years ago! Please do not give up hope of finding a cure.

     

  • richardd77 ryan992

    Very sorry to hear of your situation Ryan.

    John's advice could indeed be helpful as Amitriptyline is often given where there is nerve damage.

    It is worth doing some research into Pudendal Nerve problems. They cause very similar symptoms to Prostatitis and your problems. They are difficult to diagnose and many GPs and Urologists aren't very aware of of their existence. If you really believe your physical accident could be at the root of your problem then do research it.

    I have written a fair bit about it in other threads of this site (click on my name and follow links). I had a back/pelvis injury that ended my rugby playing career aged 35. I believe I ended up with Pudendal Nerve damage.

    The problem with PN damage is that vigoroous exercise or the wrong manipulation will further aggravate the nerve.

    Good luck

    Richard

     

  • david69804 ryan992

    Hi Ryan, much sympathy for your current state. Going to reply to you more fully this weekend (probably Saturday). My friend Phil has just about exactly the same symptoms as you and I have been with him for every examination he has had. We even managed to get a referral to a top place in London. I live in Nottingham (am Dave by the way). Will tell you the whole sequence of events and different remedies that Phil has tried. I know it is hard but please try not to get too depressed....I have been a fitness professional in the past and dealt with a lot of Doctor referrals to our Centre and I know what you are going through. Will give you the whole run down of everything experienced by Phil when I meet up with him this Saturday. I really hope this will help you.

  • ryan992

    Thank you everyone who has replyed to this.

    i have tryed amytriptiline several times now, at verious stregths. which has always had little to no effect and still leaves me with many unexsplained syptoms. along with verious other pain killers (diclofenic, naproxen, paracetamol ect). The pudnal nerve is somthing i am curently looking into and will ask whatever doc i see next to consider this also. Phil thankyou so much for youre post we seem to be suffering a near identical trouble. With all the tests you have had have they ever found your postate to be enlarged or "normal"? I am also begining to wonder if my back could be a cause for much of this and im currently trying to see a chiropractor at my own exspence  to see if i can find any answers. have you done this before?

    did this all develop sudenly for you or slowly over  time?

     

    • philip70411 ryan992

      Hello Ryan...reference your questions to me  :-

      When I initially saw my Doctor I was told my prostate MAY be enlarged and they therefore prescribed me anti-biotics and I was on them for months! None of these took any pain away. Subsequently I saw another Doctor and I was then informed that my prostate was NOT enlarged but they could not find the cause of my pain, which is when they put me on Amytriptiline etc.....Deep down I have always felt that my problem is one affecting my nerv es because my lower disc is swollen and I feel that puts pressure on the central nervous system. I would be very interested to know how you go on with a Chiropractor...this is not an avenue I have been down.  I thought in the very early days (approx 10 years ago) that I had contracted an infection as the pains just came on so suddenly...such as I have told you about pains in the testcles and penis area espcially when I urinate and it can be very very painful. After having many tests...there was no signs of any infection and the whole diagnosis was eventually classed as chronic pelvic pain. I was informed that there were many people who have the same problems and they come from various walks of life and various ages. What used to upset me was the fact that I had never met anyone with the same problems. My colleague who was a fitness instructor treating Doctor Referrals had never met anyone with the same symptoms either and I really thought I was on my own with these problems. I tended not to believe a lot of information I had been given by Doctors etc and I was totally frustrated by the advice I was given. I found this website was useful to me as I have seen that there are many people suffering such as me. I really wish you the best of luck re the Chiropractor and hope you have some relief of pain by going down that route.Please let me know how things develop. Good luck.

  • philip70411 ryan992

    Hello Ryan...this is Phil from Nottingham  (my mate Dave sent you a short reply recently).....I am 57 years of age. I have had this condition for nearly 10 years. In the early days I was referred to a local Pain Management Unit at a hospital. I attended on a number of occasions but was given conflicting advice and various types of diagnosis. These ranged from acute prostititis...irritable bowel syndrome...nerve problems etc....the tracking of the Pudenal Nerve...  Was very frustrating. Have had a lot of tests and taken a lot of medication. A full body scan revealed I have a bulge in the lower disc area of my back. I have always thought this has led to pressure on the central nervous system as I do get tingling in the feet and legs but no professional seems to support this theory. I too was given Amytriptiline but I was scared to take it as I am in full time work and drive and I did not want to feel lethargic/groggy in the mornings or I did not want to feel unsafe to drive. I did have a lower dose of this drug but it was not effective at all. I find this embarrassing but I have pain in my testicles most of the time and I am so sore when I urinate and I have to confess it has badly affected my sex life.I hope you do not mind me telling you this but I feel my penis has shrivelled and I feel so inadequate...I just want the pain to go away as it affects everything I do. I too have been so very depressed as there seems at times to be no answer. I was referred to a  specialist in London ( at the time I did not see the top Surgeon but I was given some advice on exercise and related issues).  I think it is a matter of keep reading up on the Internet and on this Patient website...as I was told that one day something will just trigger the body to combat this constant pain and problems. Personally for me no drug has worked (Doxycycline, Paracetomol, Ibubrufen, Diclofenac, Tramadol, Besavar, Gabapentin and pregabalin)....apologise about any spelling mistakes!  I have had nerve conduction, scans, ultrasound,acupuncture,  herbalist remedies injections, and the usual blood and urine tests.I fully support you as you seem to have experienced all that I have, yet you are so much younger than me which makes it worse. Please do not give up and keep looking at a lot of websites (the Amercan websites are worth a look).I wish you the very very best for the future. 

  • kevin48399 ryan992

    I was wondering if you found any relief for your problem, I am experiencing something similar and have been doing research off and on for a couple years and not really found anything thats been useful. I can say that I had suspicion it was a fungal infection in my protate possibly, but I feel a pain in my groin which happens to be the same side I had hernia surgery on like 6 years ago, unsure if its related, i thought maybe the mesh they put inside me is rubbing on a nerve or something

     

  • Mum2girls ryan992

    I have pelvic pain . I'm seeing a chiropractor . Get assessed by one . My pelvis was out of alignment .core weakness and things out of alignment can cause nerve irritation .

    Do you do back stretches for the lower back ?

    Another thing that's hard to detect is pudendal nerve irritation .

  • garba42941 ryan992

    Hi Ryan, you are not alone, truly. I have been going through such a distressing symptoms ( frequent urine, premature ejaculation, fatigue, sleepless night, confusion, and numbness in extremities, including groin as well as older right body side ) for almost 10 years now ( aged 33 ) and the situation seems to be escalating instead of improving. My GP recommended MRI scan, though nothing showed and all the blood tests were cleaned. Lastly he put me on amytriptiline which is quite helpful, thus I just feel like stopping taking drugs, because it's just reducing the pain but the underlying causes remains untouched. Hope, we would get remedies someday, somewhere...

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