New here - thought I'd say hi - my story so far

[dvdx2]

Just back from a nice relaxing hot holiday, in which symptoms were greatly reduced, but still present (I am assuming heat, distraction and stress reduction were the factors). Had a bit of discomfort on the flight home, but nothing too bad. Arrived back yesterday and the niggling nerve pains in upper thighs, lower back pain and urinary problems (discomfort whilst urinating and for 5-10 mins after) gradually got worse

I start counselling again this Thursday and my physiotherapy commences next week so that's positive

I need to really get to grips with managing anxiety - its the biggest curse in a chronic condition

[Mike Kavo]

You need to work on relaxation and meditation to get the anxiety in check. Seems this is a huge trigger for you! I don't know your life so I can't make suggestions but listen to your counsellor (therapist) they will be able to.

I agree anxiety, thinking too much, depression, catastrophic thinking you name it, it makes chronic prostatitis / chronic pelvic pain syndrome worse (I think it is part of what keeps chronic prostatitis / chronic pelvic pain syndrome going).

I think you may be helped by some whitenoise on your iPod. Might help to blank your mind when your anxious and drop the pelvic muscles. Try to listen before bed for 15-30 minutes to relax you so you can get a good sleep. If it helps try it during the day.

Also you can try Dr. Jeffrey D. Thompson relaxation music/whitenoise. This is more eastern in feel.

I have loads of these kinds of music/whitenoise on my iPod for this very reason and I think it works if you give it a chance.

[dvdx2]

positive update

I am now getting the support of two physiotherapists and had my first internal TP session. I can't remember the name of the muscle she worked on, but she commented it was harder than it should be and it replicated a lot of the urinary discomfort I get, when massaged/pressure was applied. I was very sore the next day, but pain has decreased and I have had a relatively pain free day today!!! She asked me to do a bladder flow/capacity check list for over a 3 day period, as i have frequency urgency issues and it was identified that I wasn't drinking enough fluids. She said that a concentration of urine could be causing discomfort. She recommended pelvic drop exercises. I started my other physio session this morning and it was identified that I am getting pain from the L4/L5 points on my spine (the condition gives me lower back pain). I also have found a good psychological therpist the help me address my anxiety issues.

Everything seems to be coming together - as I said i have had a good day today. I am keeping positive that I now have the proper support in place to help me.

Hope you guys are well

[Nick]

Really great news, good to hear you are doing well.

I have had quite a good week, but am not trying to think about it, the less I think about it the better i think.

[Mike Kavo]

Guys this is how it is done copy dvdx2 - the Therapists exist in your community give them a chance and let them learn to help you and be supported long term in your home community.

This is GREAT NEWS! Keep us posted please.

[dvdx2]

Wow - I had 3 mornings this week almost pain free. This is the first run like this in over 15 months. I couldn't believe waking up those mornings and feeling 'normal'. However I was at my physio yesterday (for the back pain) and am a little uncomfortable today as she done quite a bit of work on my lower spine and then used a very hot heat pad. (discomfort probably not helped by beer and an Indian meal last night). ...

However.... I am still very positive - I think pelvic drop exercises have really helped me. I attend the second physio this week for internal TP therapy (only 2nd proper session of this) so I'm hoping for even for improvement in the coming weeks.

I woke up this morning with the uncomfortable full bladder feeling and cold sensation at the tip on the penis (can I ask you guys what internal muscle may create the later sensation and I'll ask the physio to explore this on Thursday). I had my 4th counselling session on Thur evening and this is going well too.

Hope you are all doing ok.

Thanks for your continued support.

[Mike Kavo]

Initial internal work seems to throw up some odd sensations they pass in time. Probably tight muscles getting proper blood flow again and nerves being released thinking what is going on here why no pain. As you desensitise these things should pass. Unless someone has chronic prostatitis / chronic pelvic pain syndrome and does internal PT they cannot understand what you are saying. Up and down with extended pain free runs then it kicks up is common with Wise-Anderson Protocol. Try to learn how to do internal yourself with Theracane. Ask for advice unless your physio has no time limits cause that can take a while and is your control.

[DMcU]

PS Can I ask if anyone know of good physical therapists/CPPS help in Ireland/UK (I live in Northern Ireland)

Hi man,

Same problem with me!

Milltown Physiotherapy Clinic.

Maeve Whelan, - fully complies with the Protocol, I've been to her many times and she really does help. You can get an hour session that will identify and treat many trigger points. She teaches you how to breathe too, to help relax the pelvic floor.

She's the only person in Ireland I trust to help me.

[dvdx2]

thanks for the replies guys

Can anyone tell me how often a TP session should take place - once every 3 weeks is too wide a gap?

[dvdx2]

quick update - after a period of around 1 week at the start of May of relative ease, things are getting uncomfortable again. I am getting that really uncomfortable urgency feeling again, but frequency isn't too bad all. The results of my MRI showed minor disc protrusions at L3/L4, L4/L5 with the L3 and L4 discs in contact with nerve roots. Some degeneration in the back was also found.

I had a bad day of back pain yesterday, compounded with urinary discomfort and nerve pain in my legs - try keeping a smile and being positive through that lot! Saying that all, I dont feel to bad this, morning. Its just such an unpredictable condition.

Soooo, I have physio for my back this Thursday and 2 TP sessions coming up in June. Counselling is continuing (4 sessions so far).

I continue to do the stretching exercises/deep breathing / pelvic drop exercises to - onward and upward!

However, I am now thinking realistically and may need to go on pain medication. The out come of the pain specialist was Lyrica and doluxitine. Anyone any decent experiences of this cocktail?

[webslave]

disc protrusions at L3/L4, L4/L5 with the L3 and L4 discs in contact with nerve roots.

Same here, and ice packs work for me.

viewtopic.php?f=11&t=8015
viewtopic.php?f=37&t=7341
viewtopic.php?p=19394#p19394

The out come of the pain specialist was Lyrica and doluxitine. Anyone any decent experiences of this cocktail?

Doluxetine (note correct spelling) is Cymbalta, an anxiolytic and antidepressant.

Several people have already reported experiences with Lyrica (use the Search function).

[dvdx2]

thanks for that webslave

I had been using a heat lamp/hot water bottles , but will give icepacks ago.

Have you found things have improved over time?

[webslave]

Heat made my nerve roots in the back worse. Only ice packs helped.

Yes, my back has improved over time, but it occasionally flares up when I lift something the wrong way. I've considered surgery, but it seems so hit-or-miss that I'm not willing to take the chance. Plus most of the time it's not noticeable, although I do constantly watch my posture, the way I lie down, etc. I have a herniated disc, so that may be a bit different to your condition.

[dvdx2]

webslave , do you apply the ice pack directly to your skin or wrap it in something? I got a little cold burn this morning by applying the ice pack directly, but can't seem to get enough cold out of it when wrapped in something

[webslave]

You MUST wrap it in a T-Shirt or Pillowcase or thin towel! Directly on the skin can lead to frostbite and a serious injury.