My Journey

[webslave]

Ok, let me be more direct. This is only my opinion as a layman and may be incorrect.

• Chiropractors are, in my experience, a waste of time. They tend to diagnose non-existent or non-consequential conditions ("rotated pelvis" may be an example) to string the client along.
• An orthopedic surgeon will quickly send you on your way if the MRI is clear. This is a good test to see if there is really anything seriously wrong.
• You're having so many tests and seeing so many PTs/chiros/homeopaths etc that you'd be far better of travelling to the US and seeing someone like Marilyn Freedman (closest to you, in NY). It may even be the cheaper option, in the long run.
• Homeopathy is rubbish, in my opinion

[DMcU]

I am fully aware of chiro's and other medical practitioners wanting to string clients along, particularly as they are very quiet during this period of economic recession. But I want to try each of these more accessible treatments and see if they can help. I am not by any means a stressful person and I genuinely feel that the pelvic misalignment could have definitely been the cause of my condition. The first symptom of physical pain for me was in the coccyx (urethral pain existed before this), that's what makes me feel that sitting incorrectly could have contributed to the whole lot aswell. Contracting chlamydia from a girlfriend didn't help at all particularly as I tensed up the pelvic muscles in anxiety due to it taking so long for the infection to be cleared and also the burning continued which was a relentless cause of frustration for me and this never really subsided since this even when it was successfully treated. At the very least it has worsened things to a certain degree. I'm not a fan of nor am I persuaded by homeopathy but I do feel arnica is beneficial.

I know that chiro's aren't mentioned at all in A HEADACHE IN THE PELVIS at all and perhaps the general consensus is that PT's can accomplish more with treating this. I agree with this, but I feel that the muscular problems followed skeletal misalignment and so I want to get re-aligned, get re-evaluation x-rays showing improvement and introduce PT and perhaps physio so that the chiro has covered the bones, the PT has covered the muscles and the physio has covered the muscles also and/or soft tissue.

Perhaps it isn't very profitable correcting my skeletal misalignment if the muscles are tense. Psoas muscle, rectospinal muscle running down left side of back, right hip flexor are all chronically tense and hypertonic. I plan to stretch these regularly and also get straightened out simultaneously.

The US is the 'answer' and I would really love to go, I have enquired about it and the people close to me are encouraging me to go. I'm going to give the current treatments a go first as I'm not long undergoing them. If I'm not satisfied with them I will go and see Bill Taylor in Scotland first, and then if not, to the US I will go and get this sorted by people who seem not to ignore this condition like in Ireland, but to embrace it and deactivate it accordingly.

Thanks

[DMcU]

Hi all.

Lately I have been still going to the chiro and getting adjusted. My pelvis is getting corrected more and more and I plan to have the PT soon when I'm down to two sessions a week with the chiro. Piriformis was reportedly fairly tense, I couldn't believe the tension in this muscle that I would normally not feel during my daily routine.

My symptoms lately have become a little more bearable, and include,

-irritation in bladder as soon as I get out of bed in the morning, resulting in urgency to void.
-inflamed meatus and urethral pain, plus the 'cold' feeling which seems common.
-muscular discomfort - either in the glutes, when driving, sitting etc, or in muscles of inner thighs, which seems to mimic testicular pain.
-dribbling of urine for up to an hour after voiding.
-chronic constipation, for up to twelve hours. Perhaps the pelvic muscles are squeezing the stool and this constriction is preventing the normal passing of it and disrupting the dynamics of the anus.

As regards the bladder irritation - I noticed that when I have an upset stomach and if I move position while sleeping, that the contents of my stomach upsets the wall of the stomach. Likewise, when I have urine building up overnight and then I get up and stand up, perhaps this is irritating to my bladder and the urine irritates a part of the bladder that wasn't in contact with urine for some time. This, I feel, results in that mad urgency when I get up. If I stay in bed lying down, it seems not to happen.

[DMcU]

This is a fantastic account of UCPPS...and what we have all gone through...this is our anthem. Well written. I can tell already that you will recover...

Please read my starter list...

Best

Hi Carld,

I was looking through your starter list and would like to ask you about dropping the pelvic floor. To do this would you 'push' those muscles out instead of tensing them? Or is it just a conscious relaxation of them?

Thanks.

[DMcU]

Update time:
Chiro x2 a week, physical ther x2 a week.
Started on Elavil with no noticeable change as yet but we will see as time goes by.
What I found is that anxiety can set in before I leave work in the evening and that this greatly increases my urinary frequency. I think that this effects my coccygeus muscle which starts to tense and spasm causing me to feel the urgent need to pass urine. I kept an account of my daily urine passing using a measuring jug and I don't pass any less than 300ml during the day. This isn't too bad apparently. I went home for the Easter break and this anxiety never returned. It will be interesting to see how I fare now I'm back working away from home.

Physical therapist did a fantastic job lately and found many trigger points in psoas muscle, piriformis (external). I drove home in much less pain than before. But the burning and stinging in the urethra was bad lately, sometimes sending pain right up to my head. I blame the coccygeus muscle and also the pubococcygeus, as the seems to be affected by this muscle, e.g. after I have voided I will rub the pubococcygeus from the back forward to pass the last of the urine and as I do so I feel a burning sensation right up to my bladder. I feel that these muscles are referring pain.
Sometimes sex leaves me with a great urinary flow and little or no burning in urethra for a while! Perhaps this muscle 'settles' in a position for a while which doesn't aggravate things.

[DMcU]

I was told by my PT that I may have Psoas Syndrome. This can arise when the pelvis is tilted and mine was left 12mm tilted and rotated for 1.5 years before I found out about this and started addressing this problem.

I see also that weakness in this muscle is far more common than hypertonicity, but I'm not sure if this would be a causal factor of this syndrome and the pain I feel.

I was told that my left psoas is chronically tense, this is understandable as so are the muscles running down the left of the spine to compensate for the pelvic tilt on the right hand side. My PT continually finds TP's, up to 5 were found during my second visit to him. Now what is strange and leads me to believe that there is another aspect to this is that I also get this pain/heat running down my right leg, and that psoas is and seems fine, no TP's, not tense etc. This is a classical psoas referral pattern, though, perhaps it's a combination of the two things.

DId/does anyone else deal with this?

Any successful treatments to recommend?

Thanks.

[DMcU]

Hi All,

Time for an update, it's been 3 months.

I only have the chiro once per week, I do feel that there is still some re-alignment to be done with the pelvis and tailbone.
I have acupuncture once a week aswell and I like how the acupuncturist can gauge how much inflammation is still in my body by signs that are visible to her.
I get physiotherapy every 2/3 weeks and I have cut the other PT out completely. I bought a Theracane and I get great use out of it. Between this and sitting on hard small 'sliotars' (Irish word for the ball used in the Irish Sport 'Hurling'), I can release a lot of tension in my posterior and thighs.
I'm doing a bit better, sometimes I nearly forget about the condition for brief periods. I cycle every evening for about 20 mins and I feel this is helping, contrary to general consensus. I find that when I'm cycling that I don't think catastrophically as things are approaching me faster than they would be if I was walking, so that keeps me concentrated on my environment, which is a beautiful forest park, this all helps me.
Diet - porridge for breakfast with a glass of prune juice, flaxseeds and pumpkin seeds in the porridge. I only drink herbal tea and put in honey, ginger and turmeric - this is all great not only for CPPS, but for IBS too.
I doubled my dose of Elavil to 50mg/day as I felt I was only benefiting marginally from 25mg.
This only makes me slightly sleepy so I take it on returning home from work.
I play a lot more music now, and I live with a guy who has a drum kit so we are rocking it out and the last thing that's on my mind is chronic prostatitis / chronic pelvic pain syndrome when I'm playing, this is very gud, especially after taking my dose of Elavil.
I do feel fairly raw and the urgency to urinate when I wake up in the mornings but this will diminish with time. The burning in the urethra has on the whole, got better, I might have a 'bad day'' where it would be a 4 out of 10, but this usually wouldn't last for more than a day. And if I was to get up and move around, it wouldn't be so bad. On the weekends I'm usually doing good as I keep moving and have more time to prepare good meals.
I look forward to my treatments - chiro, acupuncture etc, and have given each of them A HEADACHE IN THE PELVIS to read and they all took notes on it and one of them has ordered it. Unfortunately no-one is competent enough to do internal treatment in Ireland, or so I'm told.
After my acupuncture sessions I usually get those 'fasciculations' and I take this as a sign that the muscles are being released from tension, I actually enjoy this sensation and I don't try to fight against it.
The meatus is still a visibly a little swollen and seems to get more swollen if I have to hold urine. This tells me that perhaps the bladder is a little inflamed still. Although I havn't really felt that I have triggers, be it food or drink. I had a spicy doner kebab lately after a few beers and I didn't feel any different after it at all. I can go out and drink up to 8 alcoholic beverages and not feel too bad really.
I was in Spain on hols for a week lately and my bladder did get irritated, I couldn't keep up my routine and I became very very constipated, but all has returned to the 'normal' now thankfully.
I'm still on magnesium, saw palmetto and quercetin tabs along with omega 3.

Well that's about it,

Thanks everyone.