Pelvic Pain Support Network
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He is only 14

Further to my other posts, whilst not important at the moment it will be within the next year or so, he hasn't been able to get an erection at all for the last 3 months, is this normal?

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Hi Juliabales, sorry I don't know much about male pelvic/urological pain. But

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...oops

...but re the pain, is TENS any use? Or is it the penis? (Not sure I would want my son zapping his!)

I wonder if you can get a second opinion?

Why are they saying to stop paracetemol? I find that very strange, as I've been told it should always be a base painkiller, and later others on top. And is the codeine causing him probs? Headaches? Grogginess? Constipation?

Have they tested for inflammation?

And I wonder if a pain clinic can help, with the mental and emotional side of the pain.

Have you come across MBPR? Mindfulness based pain relief. Some pain clinics offer this if appropriate. I've done a mindfulness course for depression/anxiety relapse-prevention, and some of my course-mates had health issues and pain at the root of their problems.

My son is only 6, but he responded very well to periods of relaxation in his reception class. And I have found relaxation helpful with chronic and acute periods of back pain - in fact a back-pain rehab course, run by Physio dept, I did recently included relaxation, which really drove the point home (I tend to ignore stress, but it is a big factor for me, including feeling stressed about the pain.)

Re lack of erection, that could be understandable if living with constant pain... that part of his body is starting to become dominated by pain rather than other sensations? And it may also be related to his feeling low? I'm sure these are not new thoughts, may be you can find proper info, I have no medical background, so only thinking aloud. Maybe there are some men on this group who can share some experience.

I really empathise with him starting to feel low, and with your concern as a mum. Best wishes to you both for improvement and recovery. <3

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I am waiting for an appt at pain clinic and we do mindfulness. Thanks for your time

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I tried tens machine, u can get a probe but I don't think he is ready for that sort of interference yet!!!

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I just found your post from a few days ago, and some useful sounding replies!

Can understand doctor/consultant not wanting your son to take too much ibuprofen... need to take care of stomach, don't want those probs. also, with codeine and ibuprofen, try and keep him well hydrated, as the kidneys are the other concern. That may be hard, given the pain he has associated with bladder and urination.

Maybe you can reduce painkiller dosages gradually?

And maybe he had a very high dose of codeine... I've had 30mg tablets from doctor, and found them amazing on my back pain when acute. But over the counter paracetemol & codeine combined products (or ibuprofen plus) are only 8mg codeine, so no wonder the prescribed stuff was better.

I'm rambling! Maybe you can use Over the counter lower dose stuff to try and reduce his pain.

Don't know if anyone else knows about your son's type if Perin's/perineum prob, but were nerve pain treatments suggested, like amotryptaline? A family member has this, for permanent headaches and peripheral neuropathy in feet & hands. Having said that, I'm not sure it gave them stunning results though.

Very best wishes.

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Hi we r going to docs on Tuesday and I am going to ask about amiltriptalyne. He is presently on 40 mg of codeine twice a day and that has been reduced as it was 4 times a day. Thanks for your help

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I wonder why you were advised to reduce frequency, not dose.

When my back is bad, I find I can feel painkillers, inc codiene, wearing off... I get very grumpy. I would prefer to keep 4 doses a day, but reduce the dose each time. A pharmacist might be able to advise if it matters.

Suppose it depends what strength tablets your son was prescribed.

From your other replies, you sound like you have really done alot of homework and tackling the health professionals already... you should take comfort you have made such efforts. (Not easy having to make a nuisance of yourself everywhere to get help.) Awful then still to see your son suffering. I do hope he feels better soon, somehow. Xx

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Just a final thought, reflecting on those replies you had before...

If it might be related to an injury, or to a trapped nerve, I might look into or ask about a short course of diazepam at night, to relax muscles that may be tensing to protect an old injury...?

From two episodes of low back pain inc one of sciatica, I ended up 'locked up', unable to move much w/o pain. First time, my son was 13months, and i had just returned to work. Couldn't drive. Couldn't lift my son in or out of cot or pushchair. After 3 weeks on paracetemol, codiene and ibuprofen, on a 2hourly alternating pattern, and some private physio in desperation, a different GP gave me 8 or 10 days of diazepam, 1 or 2 at night only (2mg). This helped my muscles relax while in bed at night, helped me sleep, and got me moving. I didn't need all 10days.

Had a sciatic issue about 3 years later, again prob brought on by stressful and physically busy time. (Low back pain grumbles on for me.) So I went straight to the couple diazepam I still had, and then demanded some more from my doctor! Paracetemol, ibuprofen and codiene, and gently kept moving by day. Was functioning again in a few days, without the 3weeks of total immobility.

My story... just in case it rings any bells.

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I will

Mention diazepam at the docs next week as he cant sleep. Thanx

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And one more thought on approaches to difficult pain:

Myofascial release and trigger point therapy can be helpful for all sorts of difficult pain. As can osteopathy. (Myofascial treatment is quite similar to gentler cranial-sacral type osteopsthic treatments I have had.)

Unfortunately only private treatment, as myofascial practitioners are not yet recognised by HPA, so even insurers won't recognise. More recognition in US and Australia I think.

Look at Sue Perry at TwoNineOFive Pain Relief Clinic,

if you are in the south of England. She is a lovely lady, and if she can't help, she will say so, as she always fills any cancellations, she doesn't need to keep you coming back. Wish I found her when I first hurt my low back. Cudn't get an appointment with her when i had my sciatic prob. She helped me with shoulder & neck probs after a whiplash. And she also helped me with abdominal & pelvic pain (female).

Best wishes.

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