CPPS - Chronic Pelvic Pain Syndrome/Chronic Prostatitis

[sicky]

I'd like to ask if anyone on this forum suffers from, or has suffered from Chronic Non-bacterial Prostatitis (often called CPPS) and has had success with any Thai specialists. I'm primarily aiming this post at anyone who has personal experience of it, rather than have to explain what it is, since the condition is complex and is still not well understood anyway. It is sometimes treated under the urology discipline but in all cases I've found, the urologists here are unfamiliar with it.

I have been unable to seek relief from it and the urologists at Samitivej Hospital and Bumrungrad Hospital have misdiagnosed it repeatedly during the course of the past several years, since the condition is often mistaken for bacterial infection, when in fact it is caused by pelvic floor muscle trigger points.

I'm aware that there are doctors in USA who have especially good knowledge of this syndrome and are carrying out research, but before I make steps to visit, I'm interested to know if anyone has found a doctor here, with the capacity to understand this complaint. There is more at the link below, just for the purposes of clarification, more than anything else. Thanks.

http://en.wikipedia.org/wiki/Chronic_prostatitis/chronic_pelvic_pain_syndrome

[jrtmedic]

For what it is worth you have my sympathy.

Chronic Non-bacterial Prostatitis is as you say, a relatively rare and poorly understood condition which I presume you had diagnosed in the States.

​I believe many people seek help from a specialist in chronic pain rather than a urologist (assuming a firm and unequivocal, diagnosis).

You may find others here who are able to guide you toward appropriate specialists.

[sicky]

For what it is worth you have my sympathy. Chronic Non-bacterial Prostatitis is as you say, a relatively rare and poorly understood condition which I presume you had diagnosed in the States.

No, it's worth very much to me to have your sympathy jrtmedic, believe me. It is difficult to find people who are familiar with CPPS, although it appears that there are more sufferers than is often realised, some of whom have minor symptoms, others more severe. I don't even think mine is a particularly bad case, but it has its problems.

It was a very frustrating process in Thailand, at Samitivej where I attended most frequently of all, at Bumrungrad and at Bangkok Mission Hospital, where the doctor laughed at me. At Samitivej and Bumrungrad, I presented many times over the course of five years and went to the trouble of detailing all my symptoms and observations in report form, but the doctors weren't thorough at all and just advised me it was in my mind.

I showed them articles I'd read online, some of which pointed to CPPS/Prostatitis. "Oh No", they said, "it's not that". One neurologist doctor at Samitivej Hospital even lost his temper with me, when I had the insolence to show him medical paper's that I had downloaded. "I know every nerve in the body", was his vociferous reply.

It was only when I visited Singapore a year ago, to a urologist there who claimed by e-mail that he thought he could help me, did I learn that it really was CPPS. He has administered simple trigger-point therapy - no drugs, but just encouragement to do yoga stretches. However, frankly, he's charged me an small fortune for doing what is essentially pressing/palpating the pelvic floor muscle, at the point where the trigger points have formed.

I can't justify more expense with him. He recently suggested Botulinum (botox) injection, into the prostate, in order to temporarily kill the nerve endings, in the hope that the nerves will "release" the muscle fibres that are pulling on the prostate and keeping it in a tense state. After three months, they grow back, and hopefully all will be well. Or will they?

So, if anyone does know of a Thai specialist who properly understands this condition, I'd be very grateful indeed.

[jrtmedic]

Second thought -----comment withdrawn !

Edited June 15, 2013 by jrtmedic

[nicothai]

hello Sicky

i have the same problem.. i think i suffer of cpps... and i am now under treatment at Burmungrad hospital... but the urologist looks like to dont understand my condition

i discover the stanford protocol and the trigger point realese..and make sense to me

i start doing oga..i do treatment by my self

bu i am looking for a specialist who does understand that... it is not easy

keep in touch and lets see if we can figure out something

have a good day

[kenzo2000]

Hi Sicky

I m fr singapore. U mentioned that u visited a urologist in singapore that diagnosed u with CPPS n he did trigger point therapy on yr pelvic floor muscles. Is his clinic located on the ground floor at Gleneagles Medical Centre? I hv seen one urologist there n he did a simple trigger point release on my leavtor ani muscle which was very painful but then it did not relieve my pain. Did you manage to get any pain relief so far? Take care

[sicky]

hello Sicky

i have the same problem.. i think i suffer of cpps... and i am now under treatment at Burmungrad hospital... but the urologist looks like to dont understand my condition

i discover the stanford protocol and the trigger point realese..and make sense to me

i start doing oga..i do treatment by my self

bu i am looking for a specialist who does understand that... it is not easy

keep in touch and lets see if we can figure out something

have a good day

I could not possibly recommend Bumrungrad Hospital as they caused me a severe recurrring medical problem as a result of the doctor's mistake. With regard to CPPS, I believe in the urology departments there are no doctors there who have the slightest idea of what CPPS/Prostatodynia is.

You can PM me for more details.

Edited July 21, 2013 by sicky

[sicky]

Hi Sicky

I m fr singapore. U mentioned that u visited a urologist in singapore that diagnosed u with CPPS n he did trigger point therapy on yr pelvic floor muscles. Is his clinic located on the ground floor at Gleneagles Medical Centre? I hv seen one urologist there n he did a simple trigger point release on my leavtor ani muscle which was very painful but then it did not relieve my pain. Did you manage to get any pain relief so far? Take care

Yes indeed, the doctor is Chinese and his clinic is Urology on the right side of the corridor coming from the reception area near to Guardian shop. He is well known in Sg for kidney transplants in fact. For the first two or three days of receiving trigger-point therapy, he brought some relief, in fact I would say that I was almost 100% recovered. I was so happy at first. However, I stayed in Singapore for a couple of weeks and saw him for a good proportion of those days and after the initial wonderful result, it started to fade and I found myself going down hill again. There was an issue with costs. When I booked with the receptionist, I asked about the costs and she said they started at S$150. On the first day of treatment they were S$400. I decided because there was an improvement that I would not challenge the costs at that stage because I valued the doctor's expertise and status and simply wanted to get better. However, I feel that he took advantage of me, because he kept seeing me daily and I don't believe he needed to do so. I have since found that it is best to do trigger-point twice a week, because you need to leave the muscle fibre to tense again. So his daily treatment was inefficient in terms of my medical costs. Another issue I have with him, is that he advised me to have plenty of intimate activity, in order to make the prostate clear itself (to climax in other words). If anyone has read the book "A Headache in the Pelvis" by Dr Wise and Anderson, they will know that climax causes the pelvic muscle to tighten considersably and this is absolutely not what is required for effective treatment.

This is why many CPPS sufferers say that after sexual activity, they suffer pain for days and days afterwards, because it pulls the muscle fibres again and from then it's back to square-one.

I came to the conclusion that my doctor at Gleneagles is certainly not a specialist in CPPS but rather a urologist. To a certain extent I have formed a good friendship with him regardless, I guess, probably because I see him as my only hope, but I feel very low about my condition. It has caused my self-esteem to drop to almost zero. It's a horrible condition to have and in many men's cases, it causes side issues with male issues. It is over a year since I first went to see the Sg doctor.

Edited July 21, 2013 by sicky

[sicky]

Sorry, this was duplicated for some reason.

Edited July 21, 2013 by sicky

[Supawatwatt]

Hi Sicky,

I have the same problem with you. I have been suffering from CPPS for nearly 15 years now. Between those years, I have attended both Samitivej and Bumrungrad hospitals where they misdiagnosed my symptoms. I also have traveled to China and the Philippines just to meet another disappointment. It seems to me that doctors in asian have never had an exposure with CPPS. However, earlier this year, I have visited a doctor at Siriraj Piyamakaroon hospital and his advise was to instill capsaicin into my bladder. He stated that the nerves would be numb from capsaicin effect. Months have been passed but my symptoms still stay the same. The doctor advised me to go for another instillation. Have any one of you tried this method before? Any suggestion?

I am also starting the read " headache in the pelvis" and would love to hear your feedback.

Best,

Keith

[sicky]

I have visited a doctor at Siriraj Piyamakaroon hospital and his advise was to instill capsaicin into my bladder. He stated that the nerves would be numb from capsaicin effect. Months have been passed but my symptoms still stay the same. The doctor advised me to go for another instillation. Have any one of you tried this method before? Any suggestion?

I am also starting the read " headache in the pelvis" and would love to hear your feedback.

Hi Keith, my apologies for only just seeing your post, particularly so, since you're obviously looking for help. My case has been quite complicated, in that there was an underlying and rather atypical cause of having developed CPPS. When I first visited the urologist in Singapore, he convinced me that it was CPPS and nothing more, and over the course of a few weeks, I saw him very frequently and wasted a lot of money on repeated trigger-point therapy.

The knotted-up pelvic floor muscle, in my case, I believe was quite easy to resolve, by performing the trigger-point therapy and doing yoga stretches myself (as shown in A Headache in the Pelvis). The pain subsided very soon, but for reasons of wanting to be rid of the problem permanently, I went along with the doctor's suggestion of having the trigger-point therapy every day. Frankly I think it was pointless because after a few sessions, there was no more pain anyway. Eventually it returned and I think that is the correct time to recommence therapy.

The procedure you've mentioned, using capsaicin, is a pain-reducer, often used with nerve pain. I expect your specialist has drawn the conclusion that neurological pain is contributing to your CPPS and preventing you from fully relaxing the pelvic floor. That is my thought, but I would advise you to seek other opinions. I have seen several specialists here in Thailand and their opinions vary between them.

Have you been given a neurological pain drug called Gabapentin?

I did find that Yoga helped me and at one point I did the yoga for an hour or so, in the morning and evening. There is an additional yoga posture, called the Happy Baby, which involves lying in a prone position, holding the heels of the foot and pulling the legs downwards, and outwards. It relieves pressure a lot. It is not mentioned in that book but it is shown on You Tube and it's easy to do.

I drew the conclusion in the end that many of the specialists in Thailand are good and helpful, although sometimes tend to tell the patient very straight, that he isn't going to get over something and that he has to "live with it". In many cases I found specialists whose knowledge was not extensive enough, especially on the current medical developments. However, by seeing a few of them and discussing articles I'd read, I was able to get some help, even though as a result of that, there was no single specialist who was completely familiar with all my symptoms. This has been a very lonely place to be. The specialist I saw in Singapore was, I felt, motivated by financial gain, as one sees very much in Singapore and prolonged my futile treatment. I do not feel that I could recommend someone to see him.

In Thailand I have not found an internal pelvic floor trigger-point specialist. My urologist here said it was "just a theory". I'm not suggesting there are no internal trigger-point specialists; just that I haven't found one.

You asked also about A Headache in the Pelvis. I have read the book and I think it's fine if the cause of one's condition, matches the hypotheses put forward in the book. There are lots of interesting and useful things to learn from it, but I felt to a large extent that the book is in fact a promoter of Wise and Anderson's clinic in USA. In many cases I felt that the advice was deliberately incomplete and that it might be regarded as a primer for those preparing to attend the clinic. For example there is a tool called the "Wand" explained in the book, which is difficult to obtain without attending the clinic.

I would urge you to do the Yoga. It's surprising how much it can help.

[nicothai]

Hi All

Just read all your post now

In my experience I didn't find any specialist if cpps here in Thailand

I read headache in the pelvis and for me was the turn point.

Of course the book don't tell everything and push for attending the course in California

But starting from it I begin to do yoga... And I am agree it helps a lot

Meditation helps as well

Trigger point realise works for me

I back in Italy where I found a specialist in pelvic rehabilitation... It was painfull like help but I ipro

[nicothai]

Sorry with phone!

I was saing... It improved a lot!

I understood also how to do by myself..

One thing can help as well is pulse magnetic field therapy... To improve blood circulation in the area

External pelvic massage as well

My symptoms are much better but I still a low abdominal discomfort

Good to share experiences

[Dabbu]

Hi,

 

I struggled with chronic pelvic pain for a couple years but what finally helped me the most was meditation.  If you are in Thailand I would strongly suggest signing up for free 10 day Vipassana workshops which is something I did that literally changed my life.  After this workshop I continue to do meditation daily.  Something about meditation just causes the tense muscles to begin relaxing, and also cuts off the continuous cycle of frustration that happens with this debilitation condition.  You learn to accept the discomfort and pain, and after some time (perhaps a few months of this or even a year) the pain starts to go away.  The constant urge to pee and all that, and all those other annoying symptoms started to disappear and now they are pretty much gone.  I'm 100% sure that meditation was the biggest cause of this, and its helped me so many other ways also including better sleep.  A lot of the CPPS comes from stress and anxiety, and meditation is a great reliever of that.  

 

Along with the meditation I did the stretching that is suggested in "Headache in the Pelvis" book.  I also bought the internal Wand device they sell on Amazon, and used it on myself for some time, along with different kinds of abdominal massage techniques.  This book is a must read.  I had the benefit of visiting a pelvic specialist in the USA a couple times who showed me how to use the Wand, but its also possible to learn on your own (though I would recommend a couple sessions if you can get to Europe or USA where they have these kinds of clinics -- they don't have them in Thailand). I went to a Urologist at Bangkok Hospital but they have no useful info and just give some medication that does nothing. 

 

And another book that is a must is "Teach us to sit still" in which the author resolves his CPPS problems through meditation.  Extremely inspirational stuff.  I still drink coffee and eat whatever I want. But for a while I cut out meat and I have also stopped tobacco completely.  Tobacco increases anxiety.

 

If you are in Thailand do take advantage of the amazing Vipassana they offer here in beautiful settings like Kanchanaburi forest.  It's not easy but you won't regret it.  I do think the meditation was the most important factor as it also helped me to deal with the pain while I was getting better.  I continue to do daily and its made me a much more relaxed, calm, and happy person.  

Edited October 28, 2019 by Dabbu