Help me please

[Pete7777]

I’ve been on this trip down to hell now for nearly 12 months, I woke up one day with sudden pain in my back passage and pain radiating down my groins, I didn’t think anything of if and got on with things, a few weeks past and the pain was still there and also new symptoms showed up, I was getting pain in my penis tip( hyper sensitivity is the only way I can describe it)

I went to the sexual health clinic to be told am negative with everything this pattern went on for another few weeks/months where I was in and out the sexual health centre to be told this is nothing sexual.

I then proceeded to the walk in centre to get checked for a UTI to then be told I am negative again, My frustration continued.

I went to my GP told him my story to be told I have a thing called prostatitis I was handed 2 weeks of cypro which didn’t help, I was then handed 4 weeks of doxycycline that didn’t help, j was referring a urologist who then gave me Trimethoprim for another 4 weeks which hasn’t helped my body is now completely done, I have pain all over which feels like croinc nerve damage.

The GP has now said my prostatitis is more than likely Cured and the pain I now have is nerve damage mimicking my prostatitis which has now blow my head completely off He has now gave me am Amitriptyline. I don’t no what to do I can’t deal with this pain anymore but I can’t be dealing with more medication in my body, will this work won’t it work my head had fell off. The potential side affects alone on the Amitriptyline has really put me off can any help me or give me advice of what my next move is. I’ve got two boxes of Amitriptyline un-opened and no help of anyone.

[Hidden]

I had prostatitis about 5 years ago. Like you it came from nowhere. I had 2 courses of Cipro for 28 days before it settled. It was about 12 months before I felt completely back to normal, however. I understand the UK guidelines are for 28 day courses, not 14.

[Pete7777 in reply to Hidden]

Thanks for the reply, how did you cope on Cypro? Did you say you had two separate courses for 28 days each ? And how far apart was the two causes of cypro

Was you getting any serious side effects ? From this drug ?

[Hidden]

The courses were a month apart. I had the second one because the first one didn’t help. I tolerated the Cipro fine. But did worry about the unusual side effect of tendo snapping- especially Achilles’ tendon.

[Pete7777 in reply to Hidden]

Oh good must be just person to person on side effects, I was getting really bad joint pain and after two weeks worth of cypro.

That’s why I got moved to doxycycline

I just can’t believe Docters still don’t no much about it and how to cure it considering it’s very painful and can ruin your way of life.

Suppose it’s back to the urologist for me.

[Harrythecat in reply to Pete7777]

I don't think they did you any favours giving you all those antibiotics - Cipro class can be very dangerous. I doubt low dose Amitriptyline would do you any harm, and it is possible that over time it might be helpful. In your situation I would ask for referral to a Pain Clinic, though the wait could well be months on the NHS. If you have got a couple of hundred then you could see a Pain Consultant privately.

Another approach could be physical therapy, though I haven't tried this myself yet. I doubt going back to the urologist would achieve much

[Pete7777 in reply to Harrythecat]

Hi mate thanks for the the replay, Ino they tried to give me another 4 weeks dosage of cipro and I was like no, can’t take any more, I’ve been on the amitriptyline for 4 days now and I can definitely say it does help.

Only down side it kinda knocks me out a hour later after taking it so my late nights have now turned to early nights haha.

I just find it hard to believe that in 2020 they still don’t no how to treat or know what causes this considering it’s been about for 1000s of years

Yeh I’ve been referred to a pain management clinic. Just a waiting game now

Have you had any deal with this sort of thing then yeah ?

[Harrythecat in reply to Pete7777]

Glad you aren't taking the Cipro, from what you've said prescribing it was totally irresponsible. Amitriptyline often takes weeks to have any positive effect, so good you're seeing benefit .What you'll probably find is that the Pain Clinic wants you to keep on with the Ami and add Gabapentin/Pregabalin to it - also drugs which might have a +ve effect for neuropathic pain.

I've had this for over 2 years now, got it after boozing session - and antibiotics.

Diet seems to be very important - no alcohol, caffeine, spicy foods - nightmare!

Also limiting acidic foods - try and eat alkaline

At the moment, because I think the injection, was caused by uric acid I'm cutting right down on "purines" - and going for a low purine diet as well, which isn't leaving me a lot to eat.

Some research has found that the erectile dysfunction drug cialis can be beneficial - it increases the blood supply in the relevant area. I'm taking that 5mg per day. This needs to be combined with exercise - I'm walking up and down the stairs a lot.

People say that pelvic stretching exercises are very good for it - though I haven't done much myself. You'll find plenty of these on youtube.

Also there's a natural food supplement called Quercetin which is claimed to be pretty good.

Basically to improve the situation you need what they call a multi-modal approach - combining therapies.

If you just rely on conventional doctors the odds are you'll get nowhere, and they may make it worse

[Pete7777]

Hi mate thanks for the reply

Wow 4 years, so as his completely gone now or does he get flair ups ?

Yeh I’ve seen this online it’s very expensive so maybe it’s definitely worth looking into.

[Harrythecat]

Pete

I'm seeing this man later this week - I'll let you know how I get on

harbornephysio.co.uk/amazin...

[Hidden in reply to Harrythecat]

Good luck @Harrythecat

[Harrythecat in reply to Hidden]

Thanks, I really need something to come thru for me so I can get my life back. I don't know whether this is infection or a pelvic floor issue, maybe even both. It's worth a try

[Pete7777]

Goodluck brother keep us all updated and I’ll do the same

[Harrythecat]

Pete

I may have made a breakthrough, I visited the physical therapist who specialises in pelvic floor dysfunction. He gave me an ultrasound test. I had to clench my pelvic muscles and the pelvic floor is supposed to rise and fall, mine is locked in spasm - I saw it clearly on the ultrasound screen. GP's and urologists don't do this simple test at least in my experience. The therapist has prescribed some breathing exercises for me to start off with - that's the start of the process. He says it's treatable.

Where do you live Pete?

The leading expert on Chronic Prostatitis - maybe on the planet - is Dr Curtis Nickel, from Canada

He recommends a "multi-modal" approach

So in addition to the PT you could take the supplement Quercetin, 500 mg couple of times a day. Diet's very important so unfortunately alcohol, caffeine, spicy foods, sugar, acidic foods need to be cut out - plant based diet as far as possible. Anti-convulsant drugs - Gabapentin/Pregabalin - can be helpful.

This is a good short article

universityhealthnews.com/da...

[Pete7777 in reply to Harrythecat]

Oh wow that sounds promising, am from the UK, Liverpool

I’ll have a good read of that article and have a look at some exercises, fingers crossed we both get back to are normal

Lives.

Will have a look around to see what other types of specialist are in the area

We can do this 👊🙌

[Harrythecat in reply to Pete7777]

I am going to see this guy again on Thursday - he says there is no one in your area, and it seems to be the case that there are few real experts around. There's a therapist in London - Karl Monaghan, one or two others, that's it. There's 0 NHS provision for men.

It's £90 for an appointment

If you can afford it - might be worth it for you.

Video's worth watching

youtube.com/watch?v=t8jsJ5G...(Not working as expected?)

[Tamara0]

That sounds absolutely awful, have you tried getting a TENS unit. They can reduce the feeling of pain relatively safely. Pregnant women use them?

[Pete7777 in reply to Tamara0]

Hi mate I didn’t even know these things existed.

Will definitely look into this

And your right mate this is horrific

Not just the pain it’s the mental health problems it causes aswel due to no docter having any clue on how to help or why this has happened.

Thanks for your reply.

[Harrythecat]

How are you doing Pete?

[Pete7777 in reply to Harrythecat]

Hey mate, am ok yano we have are good and bad days, am seeing a lot more good days at the moment, which is positive, the amitriptyline is definitely working.

How’s are you ? Hope your seeing some positive signs ?

[karloroberts]

Hey man, I also have a similar situation, actually got back from the GP today (after the 10th time) and they reccomended the same drug Antitriptolyine about an hour ago, I have a swollen urethra similar to Chlamydia or a UTI infection, but all of my tests came back negative and they’re telling me it’s all in my head. I totally understand what you’re going through, had it since december 2019 and my life has been hell since i got it

[Pete7777 in reply to karloroberts]

Hi Karlo it’s definitely not in your head, don’t let them make you feel like it is.

These doctors have never experienced it, nor do they even no anything about it, but it’s real and it’s really painful and can ruin ya life

The amitriptyline is definitely worth trying out. It’s not a cure just pain management but seems to be working a treat at the min for me.

Definitely give them ago I was very sceptical about it. But glad I tried

Keep us all posted.