CPPS - Chronic Pelvic Pain Syndrome Thailand Treatment

[ChiangMaiThai]

There was a thread from a few years ago here that was archived. I think there are plenty of people out there who have some of the same questions I have will find some of the below info interesting, so hopefully the admins will leave this up.

For 20 years I've suffered with symptoms of what most recently is being called Chronic Pelvic Pain Syndrome. Previously it got the diagnosis 'non-bacterial prostatitis' until the medical community finally realised that it was a meaningless term. Anyway, once you go through all the tests to rule out infection and urethral strictures and cancer and all the other abnormalities that the average Urologist is trained to spot, those without further knowledge decide that it's all in your head and advise you to stop thinking about it. Really.

Those who are a little more educated and forward thinking have come to realise that a myriad of symptoms are caused by a few key things. For the sake of keeping this short, I'll summarise the main ones: Nervous system hyper arousal, myofascial trigger points sometimes inside the pelvis and sometimes outside, a general tightening of the pelvic floor muscles, and structural abnormalities of the pelvis/connecting bones.

This is backed up by plenty of research and there are doctors around the world getting excellent results by coming at the symptoms from this angle. For those interested:

http://www.jmweissmd.com

http://www.sayerclinics.com

http://www.pelvicpainrehab.com

http://www.rhondakotarinos.com

http://pelvicpainhelp.com

http://www.freedomfrompelvicpain.com

A lot of the ideas behind these treatments can be found in the book 'A Headache in the Pelvis for anyone' who is interested. Also a book by Tim Parks 'Teach Us to Sit Still'.

I visited one of the above clinics in the US and they felt I was an excellent candidate for a number of reasons. Unfortunately I practiced the home protocol for over a year without a huge relief in symptoms. I have been unable to return for a follow up visit. It's not cheap!

I am curious if there is finally any doctor in Thailand or SE Asia who has caught up with the latest understandings of this condition. My experience with doctors in Thailand has been absolutely abysmal. I have been to all the top hospitals and some alternative ones too.

Samitivej

Bumrungrad

Vitalife

Bangkok Hospital

Chiang Mai Ram

Piyavate

Dr. Orawan

After all the standard tests, they simply laugh and say to stop thinking about it. I had the 'top' Urologist in the country advise me that my best course of action was to start playing golf.

When I mention the approach of the above clinics in Europe and the US, they show zero interest. To this day, I am baffled by that attitude. You have a patient who is suffering. You can't find what is wrong. Other doctors have successfully treated similar conditions. Wouldn't you be a little curious as to what they are doing and if perhaps you could learn to do the same thing?

Anyway, as it stands now, seeking treatment again from any of the docs in the US or Europe is simply unaffordable for me. That's a bitter pill to swallow, but that's reality.

If anyone is aware of any doctors in SE Asia who have adopted the approach of the above clinics, please do post here. For those who have been suffering and have been told that 'you're fine - there's nothing wrong with you', I hope some of the info I have provided can get you on the right track.

[sunnyjim5]

If you are seeking help with chronic pain Thailand & SE Asia is not the best place to find assistance with, perhaps, the exception of Singapore.

[tonray]

Chronic prostatitis (which of course simply means they don't know what is the cause) can sometimes be relieved with supplements containing Quercetin.

I myself suffered for a 3 year period (now seems to have settled itself ) but when it would flare up this stuff was the ONLY relief.

Can't hurt to try a bottle:

http://www.farrlabs.com/natural-prostate-health/nonbacterial-prostatitis-prosta-q.html

[Sheryl]

I terms of doctors treating this - Thailand still no.

Some in Singapore and Hong Kong. You might try Dr. Kan Chi Fai at Queen Elizabeth Hospital in HK http://www.hkpainsociety.org/asm_2013/Male%20chronic%20pelvic%20pain%20syndrome_Dr.%20CD%20Kan.pdf

[ChiangMaiThai]

Chronic prostatitis (which of course simply means they don't know what is the cause) can sometimes be relieved with supplements containing Quercetin.

I myself suffered for a 3 year period (now seems to have settled itself ) but when it would flare up this stuff was the ONLY relief.

Can't hurt to try a bottle:

http://www.farrlabs.com/natural-prostate-health/nonbacterial-prostatitis-prosta-q.html

Hi there. Thanks for this. I actually tried this same formula from the same company. Unfortunately, so far no herb or vitamin has had any effect.

[ChiangMaiThai]

I terms of doctors treating this - Thailand still no.

Some in Singapore and Hong Kong. You might try Dr. Kan Chi Fai at Queen Elizabeth Hospital in HK http://www.hkpainsociety.org/asm_2013/Male%20chronic%20pelvic%20pain%20syndrome_Dr.%20CD%20Kan.pdf

Thanks for the link. It seems this doctor knows a bit more than the average doc in SE Asia, but still no mention of the neuromuscular side of things, which is centre stage in the US and Europe now.

Like I said, I am still baffled as to why doctors here seem to show no interest in advances being made in their field by fellow professionals overseas - especially when they can offer me zero help. Hopefully I will be able to afford visit and treatment overseas eventually.

[NickJ]

Im a big fan of the work of Janet Travel MD.

Myofascial trigger points are the root of many problems. Helped me with horrible Back and SI .........I had saline injections to relax some points and it worked wonders. If there was a Thai Dr that just did TP work they would be packed out.

[kenzo2000]

Hi ChiangMaiThai

 

I used to share my experience here but probably the thread was closed due to inactivity. I am sorry to learn of your suffering and I can completely understand the pain and frustration you have gone through for the past 20 years. I myself also suffer from this debilitating condition which the doctors here conclude is some form of Chronic Pelvic Pain Syndrome (CPPS) or Chronic Prostatitis. I do have a history of penile infection with positive culture but had not been properly treated which could be the cause of my current condition. My prostate is a bit enlarged but this is unusual for a person below 40 years to experience this condition. After the urologists ruled out any causes of prostate infection due to negative culture results, they simply offer pain killers and refer me to a pain specialist. The pain specialist does help to alleviate the pain in some ways by prescribing gabapentin, lyrica and other cocktail of anti-depressants. It worked fine for me for at least 2 years with occasional flare ups. Have you ever sought pain relief from pain specialists? Though they may not solve the root of the problem, the pain relief that you get will greatly improve your life quality. Recently, I’ve got bad flare ups which I am not sure if this is caused by my stoppage of one of the pain medications or due to a traumatic event affecting my prostate and perineum. I am now back to see the urologist who put me on a one and a half month course of antibiotics with no resolution. I am now back to the pain specialist who is suggesting me to do a nerve block to alleviate my pain. I am still mulling over this option while continuing my pain medications at the moment.

Edited August 11, 2018 by kenzo2000

[Bonobojt]

I suffer with this also, mine was caused by pelvic trauma I believe, I've been through many symptoms over the last few years, tingling sensation on my perineum, pelvic floor pain, pubic discomfort, rectum/penis nerve pain, muscle entrapment in rectum etc..  good luck I hope you can find a cure some day.

[kenzo2000]

Hi Bonobojt

 

Are you currently on any treatment? I hope you are coping well. All the best to you too!

[Bonobojt]

2 hours ago, kenzo2000 said:

Hi Bonobojt

 

Are you currently on any treatment? I hope you are coping well. All the best to you too!

no I'm not, I've had treatment from Chiropractor's etc in the past, but it was too expensive to continue and I didn't know if I could trust them enough to spend all that money long term, as there's mixed feelings on whether chiropractors are scam artists or not.

 

I saw a Neurologist a while back after a chiropractor recommended I see one, he did some very basic tests, told me I had a functional disorder and it would go away on its own some day, terrible diagnose, I didn't go back to see him, had an MRI on my low back and it was normal, but I should of got my pelvis checked, not my low back.

 

a while back I accidentally discovered a lunge type stretch while doing some stretches in a park in Bangkok, the stretch seemed to do something in my pubic area, maybe move muscle or bone ? I could feel it when I done the stretch, and 30 minutes to an hour afterwards my pubic discomfort improved a lot.

 

since then I've had many ups and downs, really bad days and many good days, suicidal thoughts, happy thoughts etc.. my diet in Thailand seems to improve my symptoms, maybe its the less fiber, no wheat, no beans etc.. I'm not sure.

 

anyhow my gut is a mess at the moment (IBS or something ?) so I'm dealing with gut problems too and I have Tinnitus, things are not looking great for me at the moment.

 

  

Edited August 13, 2018 by Bonobojt

[kenzo2000]

Hi Bonobojt

 

If the lunge stretch did make u feel better, you could continue doing and who knows the symptoms might go away after a while? I havent tried chiropactor as the treatment is quite expensive without a guarantee of cure. You are not alone here so I hope you stay positive and lets pray that all of us in this forum get better each day ya.

 

Regarding your IBS, it could be due to stress or some dietary issue? See if you can identify the triggers and this will help in managing the symptoms. I am also having tinnitus on my left ear especially and I had to take muscle relaxant to make me sleep every night. This has been on going for 4 yrs+ but I have somewhat accepted that it is gonna be with me for a long time. I believe stress and tension plays a part in tinnitus so relaxation will help a great deal.

 

Good night and chat again.

 

[Bonobojt]

1 hour ago, kenzo2000 said:

Hi Bonobojt

 

If the lunge stretch did make u feel better, you could continue doing and who knows the symptoms might go away after a while? I havent tried chiropactor as the treatment is quite expensive without a guarantee of cure. You are not alone here so I hope you stay positive and lets pray that all of us in this forum get better each day ya.

 

Regarding your IBS, it could be due to stress or some dietary issue? See if you can identify the triggers and this will help in managing the symptoms. I am also having tinnitus on my left ear especially and I had to take muscle relaxant to make me sleep every night. This has been on going for 4 yrs+ but I have somewhat accepted that it is gonna be with me for a long time. I believe stress and tension plays a part in tinnitus so relaxation will help a great deal.

 

Good night and chat again.

 

yeah I kept doing the lunge stretch, now I don't need to do it much anymore, the IBS symptoms started after meals with oats and bread, I thought it may be the gluten so I stopped eating gluten containing foods and changed my diet and I feel improvement but still not back to normal, hopefully when I return to Thailand next week I'll feel okay.

 

my Tinnitus is coming from my neck, I got the Tinnitus after a Vietnamese healing massage a friend recommended to me, sometimes if I move my neck a certain way the tinnitus has a short flare up and gets louder so its definitely coming from my neck. I've just gotten use to it, barley hear it during the day, only hear it at bedtime.

[kenzo2000]

22 hours ago, Bonobojt said:

no I'm not, I've had treatment from Chiropractor's etc in the past, but it was too expensive to continue and I didn't know if I could trust them enough to spend all that money long term, as there's mixed feelings on whether chiropractors are scam artists or not.

 

I saw a Neurologist a while back after a chiropractor recommended I see one, he did some very basic tests, told me I had a functional disorder and it would go away on its own some day, terrible diagnose, I didn't go back to see him, had an MRI on my low back and it was normal, but I should of got my pelvis checked, not my low back.

 

a while back I accidentally discovered a lunge type stretch while doing some stretches in a park in Bangkok, the stretch seemed to do something in my pubic area, maybe move muscle or bone ? I could feel it when I done the stretch, and 30 minutes to an hour afterwards my pubic discomfort improved a lot.

 

since then I've had many ups and downs, really bad days and many good days, suicidal thoughts, happy thoughts etc.. my diet in Thailand seems to improve my symptoms, maybe its the less fiber, no wheat, no beans etc.. I'm not sure.

 

anyhow my gut is a mess at the moment (IBS or something ?) so I'm dealing with gut problems too and I have Tinnitus, things are not looking great for me at the moment.

 

  

Hi Bonobojt I just sent a message to you in private. Wondering if you managed to receive.

[kenzo2000]

On 2/21/2016 at 9:49 PM, Sheryl said:

I terms of doctors treating this - Thailand still no.

Some in Singapore and Hong Kong. You might try Dr. Kan Chi Fai at Queen Elizabeth Hospital in HK http://www.hkpainsociety.org/asm_2013/Male%20chronic%20pelvic%20pain%20syndrome_Dr.%20CD%20Kan.pdf

Hi Sheryl u know of which doctor in Singapore that can effectively treat chronic prostatitis or chronic pelvic pain syndrome? Thanks in advance?

[Sheryl]

I don't know offhand, suggest you google it.