My story 6 months in - input appreciated

[da0092]

Thanks for the replies everybody.

Lux: Interesting what you say about Bill, I've seen him twice and plan to a couple more times before relocating to the states (this was meant to happen a couple of weeks ago, but had to be postponed due to my Dad falling ill). During the sessions we've had, he's spent a good amount of time working externally, particularly on sore points in my abdomen and inner thigh. Internally he has found a number of points on each visit, and spends a lot of time working on them. It's really hard for me to comment on the organisation/structure of the sessions, as I've never really seen a PT before and so don't have anything to compare it to. What stage of recovery are you at now, and do you feel PT is a major component in your recovery?

Webslave & European: Thanks for clarifying. I have definitely had issues link to ejaculation at times on this journey.


Further points:

1. I've already started looking for Pelvic PT's out in Arizona (where I'll soon be relocating to), and am amazed how well served the USA is compared to the UK! In the UK there are perhaps 5 specialists in the whole country, where as in Phoenix alone there are over 10. I've already contacted a number of them and I'm impressed by their experience, to the level that I'm finding it very difficult to know who to go and see when I travel out there. Saying that, Dr Tammy Roehling has really impressed me and is based very close to where I will be, so leaning in that direction. The prices out there are very similar to what Bill Taylor charges.

2. I have been guided to this 5 min video by Dr Ruth Jones (very well known UK based PT) providing instructions on how to use an internal massage tool, in this case the EZmagic but the principles are the same I'm sure, so worth a watch.

A couple of questions about the video though:

2a) Dr Jones refers to the areas either side of the coccyx as the 1 and 11 o'clock positions, using the clock-face analogy. However I always thought that the prostate was at 12o'clock, the coccyx was at 6 o'clock, and therefore either side of that would be 5 and 7 o'clock? Can somebody please confirm what the most widely accepted 'clockface' is, as I'm feeling pretty confused about it now.

2b) Dr Jones really emphasises the point that working trigger points that DO NOT refer pain is almost pointless. This is really disheartening to me, as while internal work carried out by my PT does refer pain to my testicles and also recreate some urinary urgency, nothing he's done (or I've done during self-massage) has referred any pain to my primary symptom - burning and pain at the penis tip. This has made me worried that I'm missing something and aren't yet doing anything that's going to help sort my primary symptom. Input on this point would be really appreciated.

3. How long should you generally spend carrying out self-internal massage, and how often? I've been using my internal massager for a few weeks now and feeling like I could do with more guidance on it. Today I'm feeling pretty flared as think I may massaged a little excessively last night.


Thanks all, will be sure to keep this thread updated with my progress (or lack thereof).

[webslave]

Most used clockface

male-clockface-pelvis.jpg

She seems to have reversed it because of her position. For the therapist, the coccyx is 12 o'clock, for the patient, it's 6 o'clock.

All trigger points are worth doing, and frequency is a matter of taste and experience. Expect flares at first.

[da0092]

Thanks webslave, I spoke to my PT about it and he explained the difference between the vertical clock-face and the horizontal clock-face. For simplicity he suggests I stick with using the 'vertical' clock for self-internal work. I'm continuing with the treatments I've mentioned above but a few questions/points:

1. I see a lot of posters comment that they have no pain in the morning, and as the day progresses their pain/discomfort increases. This makes logical sense to me, your muscles are rested when you sleep and so spasms are minimised. However in practice, I have the opposite. I can't remember a day in the last 6 months that I haven't woken up (normally after a good nights sleep - thankful for that) with an inflamed and sore penis head. During good days this subsides fairly quickly after getting up and about, on bad days it remains or gets worse and causes pain throughout the day. Is this something that other people have experienced?

2. My PT feels that I'm making very good progress and I could potentially only need a few more sessions before all of the internal hyper-tonic muscle and trigger points are settled. However, I still haven't had my main pain symptom recreated by any form of massage or manipulation - that being an inflamed and painful penis head. Massage regularly refers pain in my left testicle which is a very occasional and minor symptom of mine, but no referal to the penis head. Should this concern me?

3. I'm not expecting symptoms to magically disappear once the trigger points and hyper-tonic muscle are settled, as I understand that it takes time for irritated nerves to settle down etc, but are there any estimates on how long this process can typically take, and what else is involved in the healing process other than settling of irritated nerves?

4. I've asked before about the penis tip symptoms and so sorry for asking again, but feel that I've been using the wrong terminology so want to double check. My main symptom is burning/inflammation/pain from the whole of the penis head, not just the tip/meatus. My doctor saw this months ago and prescribed a cream (daktacort) which contains both an antifungal (miconazole) and a steroid (hydrocortisone), I occasionally use it and think it partially helps when the inflammation is bad but certainly doesn't clear the issue up completely. Therefore I wanted to check that it's normal for the whole penis head to be inflamed as opposed to just the meatus, and that the cream itself is unlikely to be causing any problems itself?

Thanks.

[webslave]

Penis tip and glans pain is usually caused by tenderness and trigger points in the levator ani attachments behind the prostate. It's possible your therapist is avoiding that area (some PTs are not keen to press near or around glands and organs) or cannot reach that area (short fingers).

[da0092]

Thanks for the reply webslave.

Bill Taylor is my current PT, I know you have reservations about him but I don't think he's avoiding any areas or has problems with reaching. He has previously identified numerous trigger points in the levator ani at either 11 or 1 o'clock, and they have caused a lot of pain when palpated, but just locally as opposed to referring to the tip. And now those trigger points have really settled down. Feeling increasingly concerned that no trigger points have referred pain to my tip

What are your thoughts on the regular pain/inflammation in the morning, where as other members generally report this as the best time of day?

Thanks in advance.

[webslave]

If trigger points are resolved and pain persists, then there is allodynia, hyperalgesia, & neuronal windup (central sensitisation). These can take time to go away, so best strategy is to ignore the pain (sounds difficult, I know) and tell yourself this could take a few years to resolve. Once you do that, it will slowly fade over months to years. Noticing the pain and thinking about it is the worst thing to do.

Just think of the pain as an irritation, a pest, not worth bothering with, a pesky background issue that's best ignored. That's the key.

Remember that this pain is not actually harming you. If a surgeon were to cut out everything in that part of your body, all the nerves and the prostate etc, it would all be completely normal under a microscope. Tell yourself this, that this is only a sensation of pain, not anything organically wrong.

So because of up-regulation in the nerves that were transmitting that pain ("neuronal windup"), the pain does not disappear in synchrony with the trigger points. It may take some time for the pain to subside, and it may never subside if you are "losing your mind" over it. Concentrating on it tends to start up the whole toxic cycle again

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[da0092]

Thanks for the detailed response webslave, that all makes a lot of sense. I guess I need to start focusing on my life again instead of constantly assessing my CPPS looking for any change. Perhaps I will take some time away from the forum to help with that. Thanks again, I'll be back in time with an update of how things are going.

[European]

I had always questions trigger points not referring pain into my most troublesome parts - shaft of the penis and base of the penis. My explanation is that the trigger points responsible for this painful feelings are pretty deep in pubbococcygeus area - so it is hit and miss always, my PT is not able to eradicate them properly. Several times I had the reference of the trigger points to my familiar pain patterns in penis, but most time not. Agree with webslave that allodynia, stress, catastrophic thinking etc. are playing other major roles in this havoc, so it is difficult to make breakthrough...I had 10 great vacation weeks when my pain significantly subsided (almost no PT visit, but a lot of swimming, relaxing etc...) but now cca 4-5 weeks I am struggling again and feel how my psychical state of mind deteriorated as well...I am off any meds, so maybe its time for Elavil or Lyrica again.

[Luxemburger1977]

Hi da0092,
If you ask me, Dr Pohl (Germany) PT-type body therapy and dry needling have been the cornerstone of my recovery. I was lucky to find help close enough to home and I feel I must be about 70% of the way by now. Progress has been really slow but steady, with no flare as such and above all no relapse. However, the pattern of discomfort and pain has changed a lot over time and is partly also in the left quadriceps and glutes by now. This is apparently due to a right ankle injury some 13 years ago and the overloading of the left leg ever since, making recovery slower than with others perhaps. My walking pattern is far from ideal with me; I am soon having a walking analysis to see if compensation soles can help.

Urinary issues long gone, ED and ejaculation never caused any issue with me while they did with most other sufferers

[da0092]

Thanks for the responses everybody. I'm trying not to visit the forum as often at the minute to try and take my mind away from the condition a bit. I'm continuing with PT, any accredited quercetin product (just started) and mindfulness/relaxation and am going to continue to do so for a long time. I also recently returned to my training programme which I think will help to distract me and keep me busy.

I'm still struggling with my main symptom of pain and inflammation/irritation at the penis head. I've got a hydrocortisone cream prescribed which seems to settle the inflammation and swelling, however I've been advised against using it regularly by my doctor as it contains a steroid and can cause more harm than good. When I don't use it, I find that the skin on my penis head becomes very dry and irritated. I've been checked for all STDs and also has regular swabs of the penis head taken which have shown nothing.

Has anybody else suffered with this, and is there a cream that anybody could recommend that would help keep my penis head moist and prevent the irritation, but could be used regularly?

[webslave]

Balanitis (technical term for pain and inflammation in glans penis) is reported now and then by some members. Eliminate the obvious causes first: uncontrolled diabetes (get tested for diabetes), harsh soaps (use only clear, see-through soaps, i.e. glycerin soaps e.g. Pears Transparent Soap), and don't use fabric softeners (toxic, skin-irritating junk!) when washing clothes. You have already eliminated infection. The other possible cause is nerve-related, but that's the most difficult to fix, so look at the other causes first.

[da0092]

Thanks for the quick reply webslave.
I've recently had bloods taken and there was no sign of diabetes, I only use warm water to wash my penis, and never use fabric softener. The pain and inflammation comes and goes. I guess that leaves nerve issues, such as allodynia which you previously mentioned. Sticking with the CPPS treatments and am going to stop using the steroid cream as the side effects list dryness and irritation. May drop in at a Walgreens and see if they recommend a natural healing cream like aquaphor to help with the dryness and irritation whilst the nerves (hopefully settle down).

Hope this seems sensible.

[da0092]

In the absence of any other pain symptoms relating to CPPS, for example perennial or rectal pain, is there any chance that my inflamed and painful penis head is some form of persistent balanitis that I should get a dermatologist to look at? As I said I've had swabs etc taken which have shown nothing, but wondering whether a dermatologist could do anything further?

[webslave]

No harm in getting a dermatologist's opinion. I'd do it.

[da0092]

I saw my PT yesterday evening and she was confused by my symptoms. After carrying out some research, she has forwarded me the following link about male genital dysaesthesia. She thinks it's possible that my overuse of cortisone cream could be causing inflammation which in turn is pressing on the dorsal penile nerve which could be causing my pain.

Any thoughts?

http://www.dermnetnz.org/topics/male-ge ... aesthesia/