Male with sore/burning/painful urethra

[Budgie]

Hi all

Its been a long time since I posted here on the IC forum!

I've had a long battle with tight pelvic muscles. However, with a fantastic physio and lots of ups and downs along the way, I think we're nearing the end fixing those muscles as I don't get much pain at all from them any more. However, that's now opened a new problem. Before I had the muscle tightness in the pelvic floor, I had a constantly very sore urethra for some years, which was diagnosed as NSU. Nothing cleared it. I've had scopes, antibiotics, urine tests, swabs, STI tests...you name it... Once the muscle tightness came on the soreness disappeared.

Anyway, now that we've sorted the muscles out, the burning, soreness, achey urethra is back with a vengeance. I also get burning around the glans as well

My physio thinks there is something going on with the pudendal nerve. He thinks that the muscles have been tight around it and now they've been lossened its causing the pudendal nerve to go mad and fire off all sorts of messages to the brain, especially the penile branch i.e. the urethral part.

I'm currently awaiting a referral letter to see if I can have a pudendal nerve block. At least this will ascertain whether it is that or not (hopefully).

In the meantime, is there anything I can take that will ease the nerves (preferably natural as I take lots of prescribed pain meds, none of which seem to do much these days. I take 2700mg of Gabapentin (Neurontin), 400mg of slow release Tramadol and 5 micrograms of buprenorphine (patch) daily. The Gabapentin does take the edge off it for a while but then it comes back again.

I've just ordered a bottle of Desert Harvest Aloe Vera to see if that helps but it will take a week or two to get to the UK.

If anyone has any ideas I'd be very grateful as the pain is soooo bad at the moment, especially after peeing (and its lasts a while until the bladder is full again).

Many thanks

[nineteenwinters]

I think you probably have tried all these but these are what helps me in a flare other than pain meds: 1/2 teaspoon baking soda in water twice a day; soaking in a cup of baking soda in a warm bath several times a day; taking 4 tums twice a day; and Prelief before I eat anything (in a flare I use this for anything even bladder friendly foods/drinks). I also stick an ice pack between my legs when things start to feel 'hot' if that makes sense.

[Budgie]

Hi Andrea

Thanks for the ideas. I presume you drink the 1/2 teaspoon of baking soda and water?

I do use an ice pack when its really bad, and I've also tried prelief with limited success in the past but I haven't tried the other things. I've read about the baking soda in the bath and have often wondered why that works.

I find even walking around is uncomfortable as I find the constant rubbing on my clothes makes it worse. At the moment driving is a nightmare due to the bumps.

If anyone has any other ideas I'd be pleased to hear them.

Neil

[nineteenwinters]

Yeah, I should have specified, sorry. It tasted like drinking salt water but it usually helps me a lot. You don't have any heart conditions do you? That's the only concern there is with that. If you do I would talk to a doctor before using this method regularly.

All I know about the baking soda in a bath is that it really soothes my urethra. I get almost instant relief sitting in the bath. I do not know if this would help males the same way though. When I am in a flare if I could I would spend all day in the bath.

I hope you get relief from something soon.

[ICNDonna]

The only other things I can think of are the IC diet and making sure you are drinking enough water. I can't do the soda due to high blood pressure, but Tums can also help (and they're a good source of calcium as well).

Sending healing thoughts,
Donna

[Budgie]

Andrea.
No, I don't have any heart condition. The symptoms of burning, stinging, pain all seem to indicate its a nerve issue. Would the baking soda calm the nerve endings?

Donna, thanks. I must admit, I probably don't drink enough water. My main drink is decaf tea. I don;t touch coffee at all (although I love it!). I will have a look at the IC diet and see if that helps.

Thanks both. Appreciate your input and am willing to listen to any other ideas people may have, specifically in calming irritated nerves. I've ordered the Aloe Vera anyway but will this actually calm irritated nerves?

[nineteenwinters]

It could help that. It helps to reduce the acid in the bladder which will in turn give your nerves a break. For example I have tearing in my bladder lining leaving my nerves exposed anytime my bladder has any urine in it, so that's how it helps me too. It's not exactly the same thing but I don't think it could hurt. Worst thing would be it doesn't work and you drank salty water heh.

That's the same reason the Tums and the Prelief is used during flares I think. If you're urine isn't dilute (if it's still yellow) that can wreak havoc on your nerves too. So if you have to drink more to get it dilute that would probably help.

[Budgie]

Well, my Desert Harvest Aloe Vera capsules arrived on Tuesday and I started taking them. Now, I don't know whether this is a coincidence or if its something to do with the Aloe Vera, but the soreness and burning started to subside on Wednesday and apart from a little relapse on Thursday evening, I actually feel much better.
I've no burning at all and the soreness in the urethra only comes on later in the day and nothing like the level it was at at the start of this week.

I shall persevere with the AV and see whether the symptoms continue to improve.

Thanks for everyones' help and suggestions.

[ICNDonna]

That's good to hear. I hope you continue to improve.


Donna

[Budgie]

Well, after a period on the aloe vera capsules sadly they didn't work long term. Since my last post I've had a period of more muscle tightness which always reduces/removes the urethral soreness/pain and the burning on the glans.
At the start of 2012 I have had several pudendal nerve blocks and diagnostics. The first few did nothing apart from flare things somewhat for a short time. However, on 10th May I had a nerve ablation done via CT scan. I have since been in a bad flare up since then. The consultant said that the muscle pain would probably be eased and he was right, I've had hardly any, which is great. However, as before when the muscle pain is reduced/remove, my nerve pain in the urethra goes through the roof. Today its been constantly sore, achey and irritated in the urethra with burning on the glans. The urethra feels tingly all the time as well, if that makes sense. Every movement is painful and makes things sorer and even lying still is painful! I iced the area for several hours this evening which usually helps but didn't really do much today, I guess because the pain is just too bad at the moment.
I'm due to go on holiday on Monday and am petrified that this pain is going to carry on and spoil my hols. I just need some relief from it for mine and my wife's sake.

Is there anything I can buy OTC that will calm nerve pain? I'm going to give the baking soda a go tomorrow.

Any help, as always, is appreciated.