Similar Experiences ?

[midget1978]

Here is my experience with chronic prostatitis / chronic pelvic pain syndrome - I just wondered if it is similar to anyone elses ? In 1994 I developed a urine infection that unfortunately was not diagnosed properly until quite late and subsequently treatment took some time. By that late stage unbeknown to me it had developed into Prostatitis. Antibiotics eventually cured the infection but the pain continued after this (mostly in the lower back, perineum and tip of the penis). After several tests and visits to two different urologists I was informed that the "pain would eventually burn itself out". I realised early on that anxiety was clearly a contributory factor and with the help of a clinical physiologist who helped me cope emotionally with the pain eventually it gradually started to subside over a period of 8 months or so. Since then I have been reasonably pain free apart from the occasional flare up most especially in 2001. These have been due mostly to increased stress and I have found that in the past the best strategy has been to try to get on life and not think about it too much. In all cases the pain has subsided. I was aware that once you had Prostadynia (as it was diagnosed back then) it was never really completely cured and it could flare up again. However after such a long period of being relatively symptom free I felt invincible and threw myself into a full and very busy family and work life. I took on a responsible and stressful job and lived life to the full (stupidly in hindsight but when you are pain free you tend to feel that all is going to well and you have cracked it). Then in February 2008 disaster struck. After a period of particular stress at work I experienced pain again and this time it was more intense (due to increased age?, I'm now almost 50) )and didn't go away. In fact a year later it is as bad as ever and seriously affecting my quality of life. I have had to give up my job and my career and are currently the house husband. At times it is a real struggle to get through the day due to the chronic pain. I really didn't think that I would be troubled by this sickening and troublesome problem again. I can't believe that after 15 years since I first experienced problems there seems to have been no medical treatments developed to help those with this condition and worse still no apparent consensus of opinion in the medical profession as to the best course of treatment. All that seems to have happened is that the name of the condition has changed to chronic prostatitis / chronic pelvic pain syndrome !! Over the past 12 months in an effort to rid myself of this pain I have tried painkillers, neuropathic medications such as Gabapentin, Duloxetine and Ametriptyine. - all with no affect on reducing pain levels. Last summer I fell into a period of depression and undertook a course of CBT in conjunction with some anti-depression medication. I am much better physiologically but unfortunately still in pain. After trying the Urologist route again I am now under the care of a Pain Consultant. He believes that the problem in my case is due to damaged nerves (as a result of the original uncontrolled infection) which since then have become over sensitised as a result of the extreme stress I was under at work. He also feels that there is a secondary but significant muscular spasm component that is aggravated by overdoing activities. His suggested treatment is an steriod epidural and possibly trigger point injections into areas of muscular spasm. This treatment would enable the nerves to be "calmed' and any areas of spasm to be addressed. Although temporary in nature it could be a "window of opportunity' to enable my body to realise that there is actually no reason for the pain signals to be sent anymore. I am well aware that there are complex multifaceted elements to this condition and to enable me to address the anxieties I am undertaking regular meditation and yoga sessions etc. I recently had some sessions with a Physiotherapist and after a internal examination they found no particular muscular trigger points but reported that the whole pelvic area hypertonic. I am aware of the Stanford/Wise-Anderson Protocol but in light of this I am not sure if this will benefit me, anyway I don't actually like the sound of it to be honest. I have found no treatment to have been of particular relief other than perhaps a heat pad. The pain always gradually increases notch by notch during the day, (sometimes I am pain free on waking in the morning). I am told that this is due to a combination of increased muscular activity and anxiety?). Small dosages of Diazapam help to relax me but I am aware that these can only be used sparingly. Sitting especially for any prolonged periods is extremely painful. I am currently trying the supplement Quercetin to see if this helps. Although by nature I am not an optimist I am trying hard to stay positive and hope that like before the pain will eventually subside. The CBT sessions last year helped me put this whole thing into perspective and not dwell on it too much but clearly it's not easy. The Pain Consultant has advocated some pelvic exercises to undertake each day but here again I am confused, as there seems to be difference of opinion as to the usefulness of some of these exercises, e. g. Kegel or not ? I have no idea how common this condition is and it would be good to hear from anyone whose symptoms and frequency of the problem is very similar to mine. Also has anyone been helped by the injections that I have described ? I'm particularly interested from anyone in the UK who has been treated under our NHS - any good experiences ? Sorry I don't want to be depressed again so I'm not that interested in the bad ones ! I shall be shortly attending some pain management sessions which help those suffering from Chronic pain (not just CPPS) they talk about coping strategies such as pacing etc. The trouble with this is that for me I have found it very difficult to pin-point exactly what causes the pain to flare up and what to temporally avoid - e. g. sexual activity, walking, swimming, exercises etc. Consequently I have become less active overall as I'm a little concerned about overdoing it. I'd like to be able to get on with my life again and perhaps (as before) the best approach is going to be to try and forget about the pain, however with it this intense at times and the flare-ups having been this frequent over the last year it's not at all easy as I am sure you are all aware.

[garyholc]

Have you been to see Bill Taylor PT in Scotland?

[midget1978]

Have you been to see Bill Taylor PT in Scotland?

No I haven't. I saw a PT closer to my home in SE England. I presume that he specialises in this field then ?
Incidentially I saw that some light exercise has helped you. I've been reluctant to do too much exercise in case I overdo things , what type of exercise do you undertake ?

[garyholc]

Hi

Contact Bill, he is based in Edinburgh, I am flying up from Cardiff on the 11th actually for my 5th visit. He has been specialising in treating chronic prostatitis / chronic pelvic pain syndrome for about 8 years now. I have certainly found him a huge, huge help both physically and mentally. He charges £100 for the initial appointment, and then £75 thereafter, but for those travelling far, the appointments usually last in excess of an hour. His office number is 0131 3328698. If you want to speak to Bill and he is busy, he will ring you back but definitely go and see him.

Light exercise : swimming, walking and I have a cross trainer which is no impact.

I have to say your story does scare me to some extent in that it went away and came back worse. Its something I personally fear as at present my symptoms are very mild. Started with frequency, then built up to pain at a level of between 1 and 3 out of 10 (being worst). Most days I have nothing but the odd niggle, but yeah I do fear it coming back worse one day. However, there are also people on here who have had it years and who now have it under control.

While you were symptom free I guess you did little exercise, stretching, PT work, relaxation and had a stressful busy job? I intend to try and stay at this level or better by not going for any more stress in work regardless of salary increase, and doing some stretching and PT work as required. I hope that will keep it at bay anyway!

There is also a lot of information on here about diet. Such as eliminating wheat and gluten. Have a read through the site, there is loads on here. With regards your standard of living at the moment, how are you managing with regards daily tasks, pain management etc? If you had to rate your pain between 0 and 10 on a usual day where would you be? I ask because I keep a diary and have done for the past year now, so I can gauge any progress. I'm definitely at lower pain levels now than a year ago looking back and it may be useful for you to do something similar to encourage you when you see things getting better.

Initial steps I would think (others will comments too no doubt) would be:

- contact Bill Taylor for an appointment and assessment
- read HITP book
- examine your diet and read about food on this site in particular spicy foods, beer, wheat and gluten
- do some of the stretches in the HITP book and practice the relaxation methods
- read through this site and arm yourself with information and knowledge ready for when you next see your Uro
- personally, while the NHS tried its best, my experience with the medical profession has been a waste of time with regards this illness, I have had far, far more successes with my own knowledge I have gained, and from seeing Bill for treatment.

[benzo]

Seems like a textbook case of chronic prostatitis / chronic pelvic pain syndrome to me.

Sounds very similar to the way it all kicked off for me: a couple of recurring infections, initial treatment with antibiotics and a lingering pain that developed in chronic prostatitis / chronic pelvic pain syndrome over time.

I developed it in late 1996 and even ended up in A&E. Bear in mind these were the dark ages for chronic prostatitis / chronic pelvic pain syndrome sufferers so I was diagnosed with, yes, Prostatodynia which at the time was the container term for non-bacterial prostatitis or CPPS. I've done the whole tour: useless test, more useless tests, I even went to Germany to have my chances assessed for denervation of the spermatic cord.

It was only until I stumbled upon AHIP that I started to see a logical connection between muscles and the pain.
Then the challenge started to find a good PT, until I met someone who is highly skilled at tp release and knows about the pelvic floor.

Just this week, and after a relatively pain-free spell, he released a new tp on the sphincter and one on the levator ani.

I've always kept working out because of the empowerment. I have noticed, however, a connection between direct leg work and flareups so I'm trying to avoid that for now.

[midget1978]

Thanks for your reply Gary.
Yes would definitely caution against a job with too much stress, no question about it, prolonged and extreme stress caused this latest bout for me - be careful what you take on and how you cope with it. When I do go back to work, it will be in a completely different job. In the meantime I'm struggling with managing the pain to be honest. It varies, on a good week it on a scale between 1- 10 it averages about 3/4 (has been as low as 2), but at the moment it's flared up for some unknown reason and it's probably nearer 6/7. It always gets worse during the day - I am not sure if this is due to a combination of anxiety/worry and/or usage of the pelvic muscles which are in spasm ?
After over a year since this last bout of pain I'm still finding it hard to pinpoint what exactly causes it to flare up (can diet really play a part ? , I paid no attention to my diet when I was symptom free for all those years so I am sceptical).
Yes, I I'm keeping a diary of the pain levels. I'm interested in the treatment from the Physio you mentioned, as I have mentioned I have tried some physio locally before but with no marked improvement although this did not include any trigger point therapy since it was deemed by the Physio that it would need to be done too frequently to have any benefical effect (i.e. not something you could do at one appointment and then leave until the next time). At the moment I'm going down the pain management route but I am open to any treatment which has been proven to be successful. When the Physio I saw did an internal examination she said that she could find no particular trigger points although the whole area was hypertonic which I understand means tender !
One of the things I have found with this condition over the years is the feeling of complete isolation and not being able to share experiences with other sufferers. I wonder, would you be prepared to have a chat via instant message/or phone sometime to share your experiences with Bill ?