My progress to date - 85% better (Nov 2006)

[Karson]

RIchard - keep at it sound like your going in the right direction. I have had chronic prostatitis / chronic pelvic pain syndrome for a few years. I have seen Dr. David Wise in the last few months and between the relaxation and pt my pain has been greatly reduced. My rectal pain was once unbearable and is now around a 0-3. I am still getting some "tingly" feeling in the perineum. My pt just started to try and address the area - and there seems to be some tightness - but no trigger points. I was wondering if you could feel the trigger points in your perineal area by pushing from the outside?


Thank you,
Karson

[scotsman]

Karson

Yes, I still get a lot of pain through external PT (my wife does 30 minutes of external work on me each night!).

Relaxation also makes a massive difference.

Just wish progress wasn't so slow! - but that's the nature of the beast I guess and at least it's progress

Richard.

[scotsman]

Time for another update.

Been pretty good these last 6 weeks.

Current symptoms:

• Some pain around the rectum and ache in my bottom cheeks/legs. All of it seems to be enimating from the triggerpoints we're still treating between by anus and pernium.
  Almost no pain now in the penis
  Constant feelings of frequency have now gone However, I still need to go more often than usual (every couple hours, but I do drink a lot of water).
  Sex still causes an increase in symptoms but now by a very small amount.

Medication:

• Quercetin (dosage currently one a day). Almost finished my last bottle and won't be buying any more.
  Tramadol (Ultram in the US) - when required - usually 100mg a day.
  Prelief - this has taken away the slight burning I sometimes got on urination.
  Omega 3 capsules (fish oil)
  Vitamin C supplements

Protocol:

• I'm doing 30 mins skilled relaxation most days.
  PT once a week.
  Daily pelvic exercises.
  All PT sessions end with some acupuncture.
  External trigger point work with my wife every second night (see below).
  Stretching exercises as detailed in AHIP book 'almost' every day.

I'd now say I am up to 80% better on good days and PT has eventually taken away 70-80% of my frequency feelings once we found the triggerpoints that were causing the dysfunction.

One interesting point is that I was doing too much physio on a certain area. My wife was heavily treating the same area each night but it wasn't getting better and the pain was horrific. My physio suggested that I leave it for a few days inbetween each treatment - to allow the muscle to recover. Which I did and it has made a real difference. Obvious I know, but worth watching out for.

I've been making good progress and my internal pelvic floor is pretty much triggerpoint free now. However, I've got some serious problems with the muscles between my anus and my perineum (probably the top side of my outer layer of my sphincter). It's been hellish to treat and it's probably only got 30% better after a number of months of treatment. That is still good progress but I'm not sure whether PT alone will get right of this last major trouble spot. The last couple sessions though have been less painful - so it looks like I might eventually be getting somewhere with that area (saying that, it was incredibly painful even just touching that area when we started, so we've made good progress. Just takes so long!).

Looking back at the start of this thread I said I was 70% better after 6 weeks of treatment (around 3.5 months since I got this). I don't think I was 70% better - probably 60% at best (still pretty good for 6 weeks) but it's taken another 20+ weeks to get to 80% improvement (on good days!). I do now believe that I'm treating the last tough area (the treatment of which, as said above, causes a lot of ongoing pain).

I'd like to enphase though how important sticking with treatment is. I have no doubts that if I hadn't started treating that anus/perinem trouble area that I would be in less immediate pain than I am now, but in the long term I would never get rid of this thing.

Richard.

[one day...]

Glad to hear your still improving! I always take the time to look at your posts, they are usually helpful, and you really seem to care about your other chronic prostatitis / chronic pelvic pain syndrome bros. Keep it up!

[Richard.N]

Omega 3 capsules (fish oil)

BTW, Eye-Q fish oil is on three for two at Boots at the moment.

[scotsman]

Thanks Richard - I'll pay a visit

[scotsman]

It's been 6 months since my last update but it's been a frustrating time.

Current symptoms:

• Pain still enimating from the triggerpoints we're still treating between by anus and pernium.
  My urination frequency is almost back to normal. I still 'feel' I need to go more often these days but I've retrained my bladder.

Medication:

• Tramadol (Ultram in the US) - usually 150mg a day.
  Prelief - but down to only 2 or 3 per day.
  Omega 3 capsules (fish oil)

Protocol:

• I'm doing 30 mins skilled relaxation a couple times a week (see below)
  PT once a week.
  External trigger point work with my wife every third night.

I have one major remaining trouble spot (the area between by anus and pernium) - which refuses to get better. I don't have any deep internal triggerpoints left but still get them now and again just inside the sphincter. The PT we're doing (both internal and external) seem to just keep the triggerpoints from spreading back out again.

So, in the past 6 months I'd say I've not made any improvements on the reduction of my pain. However, I have made improvments on the frequency side and the increase in my symptoms following ejaculation is now minor.

One big item here though is that I've not been doing my relaxation exercises every night - probably only a couple times a week at best. I really need to get my act into gear and start the relaxation side of the protocol.

Who knows, perhaps over time PT itself might take away my remaining symptoms but I doubt it. To quote from an email I had from Dr Wise:

I myself had close to 60 treatments of physical therapy and, while my symptoms waxed and waned during the PT, I was still in pain after these almost 60 treatments. The idea that physical therapy alone is the answer, as I think you may understand, is erroneous. The issue in dealing with chronic pelvic pain syndromes is the breaking of the tension/anxiety/pain cycle which keeps the syndrome self perpetuating, the pelvic floor trigger points active and keeps the pelvic tissue from healing. While physical therapy temporarily loosens a tight and painful pelvis, if there is not copious time in which the pelvis is profoundly relaxed, I think it is very hard to intervene in the syndrome and allow healing to occur. Furthermore, if catastrophic/anxiety producing thinking jacks up the trigger points that have been quieted down with physical therapy and relaxation, the tissue has no down time, no time to heal. So the focus on physical therapy alone is only one piece of the puzzle and usually offers no lasting solution when not combined with the other components we discuss in our book.

Says it all really.

Richard.

[scotsman]

18 months further on - where does the time go!!

I've been making superb progress this last 6 weeks so thought it was time for an update.

I've been reducing my Ultram/Tramadol usages which I've posted about here. But to keep all the relevant info on this thread I've quoted my posts below:

Following some of the discussion threads around Ultram usage, I thought it might be interesting for me to post about my current action of reducing my dosage.

I'm reducing my dosage for a number of reasons, one being to see how low a dosage I can live with and the other to try and give my system a little bit of a clear-out of Ultram, which might increase it's effectiveness if/when I take it again.

Some background: I've been taking Ultram/Tramadol now for around 30 months now - and at my peak I was taking 250mg per day - 100mg in the morning, 100mg at lunch and 50mg at dinner.

After a period of time I reduced this to 200mg (cutting out the evening dosage) then finally down to 150mg (100mg in the morning and 50mg at lunchtime). I've been 'comfortable' at this level now for over a year. My pain diary for a normal day would read as:

• * When I wake up, there's no pain but it comes back again after about 10 minutes. I have my 100mg Ultram with breakfast and the pain will increase for about 30 mins before the Ultram starts to kick in and soon I'll not be in any pain at all (little discomfort but no real pain).
  
  * Around 11am to 12 noon my pain level will start to increase again. I then take 50mg at lunchtime and my pain decreases to about a 2 on the pain scale (of 10).
  
  * In the evening my pain level will either stay around the 1 or 2 mark but over the past 3-4 months I've had the odd evening when my pain level would be close to zero. I'd still have 'discomfort' but nothing I was really class as 'pain'.
  
  * My pain level would increase to around 3-4 after doing my physio sessions at night.

I found the above pretty easy to cope with - so thought it was time to drop the dosage again. I started doing this 3 weeks ago.

• * I reduced my morning dosage from 100mg to only 50mg and kept my lunchtime dosage at 50mg (so 100mg for the day, instead of 150mg). The first day of doing this my pain level in the morning was around a 5 - very uncomfortable.
  
  * After taking my lunchtime 50mg the afternoon pain level was around a 4. A couple points higher than it was when I took 100mg in the morning. Due to having less Ultram in the system and the nerves not being quietened down in the morning as much as they usually are when taking the higher dosage.
  
  * In the evening my pain level would be around a 2-3. When previously it would be close to zero.
  
  * After a couple days I'd say that my morning pain level settled down to a 4 in the morning and 3 in the afternoon with the evening around the 2 mark.

After 2 weeks on that dosage I've reduced it further and for the past week I've only taken 50mg in the morning and nothing at lunchtime.

• * The morning pain level is still around the 4 mark but now the afternoon can increase to a 5 and into the evening I'd say it was 4. So a general increase in pain throughout the day (as you'd expect from the reduction in pain medication).

I've got to say that I don't think I'll be able to continue at this level going forward, it really is a big impact on my quality of life. I feel I could be comfortable enough on a 100mg a day (50mg in the morning and 50mg at lunchtime) - which is a 50% decrease from the 150mg I was on.

However, I'm going to stick it out in the short term. My plan is to stay at 50mg for another week then try to come off it entirely for a few weeks (or as long as I can stand it). Of course, another reason for coming off it slowly is that it's important to taper off any medication that you've been on for a long time, to ensure the withdrawal effects are minimised.

What has been interesting though is that I'm now much more aware of my pelvis throughout the day and probably much more active in relaxing my pelvis all the time as I'm constantly aware of the pain - whilst before the Ultram was masking it.

I'll post updates on my progress.

Richard.

Well, a week further on and I'm still on 50mg a day but starting to cope much better on it. The pain levels haven't decreased but I'm more used to it and in a strange way, I'm enjoying being much more in touch with my pain levels than having the Ultram cover it up.

It's forcing me to be more careful of how I sit, I make sure I do relaxation sessions every day and I'm constantly checking to make sure my pelvic floor is relaxed.

I'm very aggressively treating the area around my sphincter with a Theracane, so that's causing an increase in my pain level but I'm coping with it.

I'm going to stay on 50mg for the next week then I might try a weekend not taking anything and see how that goes. I don't expect I'll then stay off it for good, but it will be an interesting experiment.

Richard.

Well, another 9 days have passed and things are going well. I've been aggressively treating the trouble spots around the sphincter and it's starting to reap rewards as the triggerpoints don't seem to be returning with as much fury as they did before. They are coming back though but not to the same level and I'm still doing physio every night. The success in dealing with these areas has helped decrease the pain levels I have through the day (still on 50mg of Ultram a day - taken in the morning). Note that I've had to do a lot of physio (months and months worth) around that area to release and stretch the muscles enough to enable me to even reach those deep triggerpoints.

* The morning pain level is probably around the 3 mark now once the Ultram has kicked in (which is a reduction to what it was a couple weeks ago) but now the afternoon will stay at a 3 (rather than increasing) and into the evening I'd say it was still a 3 though I've had the odd day when I'd say the evening was a 2.

So a general reduction of 1-2 'pain points' on the old scoring scale across the day.

Very positive as this is probably the largest step forward I've managed to make over the past 12 months.

I don't think I'll have to increase my Ultram dosage up again now and possibly in a months time I might try coming off it for a week (just see how things go). Being off the Ultram has certainly helped me be more aware of the improvements.

Richard.

Another week has passed and still making good progress

I'm still on 50mg a day but I'd say my pain levels are now around the 1-2 mark in the morning once the Ultram has kicked in but now the afternoon it's around a 2 going down to a 1-2 in the evening.

I can have the odd day when it spikes up to a 3-4 but the norm is much lower.

It's mostly been down to finally being able to successfully being able to treat some very deep triggerpoints.

Richard.

So, from taking all the above into account my current position is:

Current symptoms:

• Pain still emanating from the triggerpoints between the anus and perineum (the sphincter seems to have been a major culprit) - but this has been dramatically reduced and I really feel I'm on the road to getting rid of them completely.
  Urinary symptoms are now 99% gone and I don't get any flares after sex.

Medication:

• Tramadol (Ultram in the US) - down to 50mg in the morning only (down from a peak of 250mg a day).
  Omega 3 capsules (fish oil).
  Calcium and Vit D supplement - as I'm dairy intolerant.
  Vit C and zinc supplement.
  Probiotic in the morning
  L-Glutamine at night
  Quercetin

Protocol:

• 30 mins relaxation every day.
  External triggerpoint work every night.
  Internal triggerpoint work once every 3 weeks.
  Stretching every day.
  Gym 3 times a week.

I took any accredited quercetin product before near the start but it didn't do anything for me back then - however, I've started taking it in conjunction with treating my main triggerpoint areas and I've noticed a reduction in my symptoms. I feel that most/all the improvements are down to the triggerpoint work but I'm going to keep taking the any accredited quercetin product for now. Can't harm!

I'll have had this for 3 years this July and I'm aware that after I've resolved what I think are my last remaining triggerpoints that there may be others I still need to address. Steps forward though so I'm happy :)

All I need to do now is win the lottery so I don't have to go to work and I'm convinced that would dramatically speed up my recovery (based on how much less my symptoms are at the weekend or when on hols). I try to limit my standing at work but I've got a 2-3 hour commute each day which doesn't help. I'm silly in that I've got a performance car with sports bucket seats which gives a hard ride for my poor backside! What I really need is a big Volvo with big fat soft seats with an auto box for that commute!

Richard.

[MastCells]

Thanks for the update. I hope you continue to make progress.

Two to 3 hours is a long commute each day!

[scotsman]

Thanks for the update. I hope you continue to make progress.

Two to 3 hours is a long commute each day!

Thanks Chris

It's around 1-1.5hrs each way (traffic dependent). It would be nice to work from home or close by but my current job doesn't really have that flexibility. Not changing jobs though as this one pays very well, I get lots of holidays (42 a year!), great benefits and it's very secure. Just what we need just now as my wife has resigned from her previous job and has started her own business so the family income has taken a hit (hopefully on short term!).

Richard.

[scotsman]

A month further on and things are still going well.

I'd say that I'm now very comfortably on only 50mg a day and whilst the pain is stopping me from reducing it to zero, I do feel I'm getting there. The pain region I have is decreasing in size and when before I could just use my fingers to do external perineum triggerpoint work (incredibly painful to even touch the area gently to start with) I now have virtually no additional pain in my perineum when applying pressure with my fingers and now have to use the Theracane to get the leverage and pressure needed to treat the remaining deep areas. This has been a major step forward during the last 3-6 months.

This has been pretty indicative of my recovery to date - where my whole pelvis was painful and over the past three years via relaxation, stretching and triggerpoint work I've brought that dysfunction back in ever decreasing circles. I've actually pretty confident that the next 12 months could well see me beat this thing.

It's been interesting for me reading over my first few posts on this thread - as I had almost no perineum pain in the early days and yet that's what has been the last thing to go. The reason for this, to my thinking, has been that I started to develop some serious triggerpoints in and around the perineum that I didn't treat. What was worse is that I didn't find or treat them for a good 2 years by which point they have become severely acute and accounted for, I'd say, around 80% of my pain. This also explains why my pain got worse during the first couple years over time and why I had to increase my Ultram/Tramadol dosage.

Just shows how important it is to find a physio who can search out and identify those hard to find triggerpoints and chronically shortened muscles.

Richard.

[CppsDad]

Great update (and informative). I'm really keeping my fingers crossed for you Richard that you are over the worst!

Mike

[scotsman]

Into September now and things are still going well - slowly but forward

I'm now very comfortably on only 50mg of Ultram (tramadol) a day - taking it first thing. That keeps my morning pain levels down to a 1-2 on the 10 pain scale and in the afternoon it's around the 2 mark then down to 1-2 again in the evening. I can still get the odd day when it flares but then it's up to 4-5 at most and usually after my physio session that night (which I do every day) it quietens down to it's usual level.

I'm managed to get rid of 2 main triggerpoints around my perineum - which don't seem to be coming back now - which is great. I've still got a lot of muscle dysfunction down there - but I'm slowly stretching the muscles back out again.

Small steps as ever but making progress.

Richard.

[scotsman]

End of November and the last 5 weeks has seen really significant progress

After reading a post recently by Sleeper Service I've been doing Y stretches (that were recommended to him by Bill Taylor - physiotherapist) - that is lying on my back against a wall with my legs vertical up the wall. You then lower your legs to the side (making a Y shape). I hold the stretch for at least 5 minutes.



This really caused a massive flare for me but I kept at it and, 5 weeks later, I'd say that the pain in my perineum has reduced by around 80%+ - massive progress for me as I've been struggling with treating my remaining perineum pain for 18+ months.

I'm still on 50mg of Ultram (Tramadol) in the morning but that's it and I now have times where I have periods of the day when I'm virtually pain and symptom free. Some days still aren't that great but the difference since doing those Y shape stretches is amazing.

I still do physio every night, but prior to the Y stretches it took around 30 mins and I was in pretty severe pain during treatment but now my sessions last 10 mins max and the pain is minimal.

I still take Vit C with Zinc, Magnesium, pro-biotics and Omega 3. Next step for me is to try and stop taking the 50mg in the morning but that's such a low dose that I'm not in any real rush to push it.

I'm really starting to see the end of this condition now.

Just realised that this is my 1000th forum post - and what a good one to make it with

Richard.