UCPPS - Prostatitis, Interstitial Cystitis Forum

There does not seem to be any cohesive and self-contained body of information at present regarding options available to Australians who suffer from CPPS. We've all read about the various treatments but inevitably unless you are lucky enough to live in the US, finding access to such treatments is usually impossible.

After going through the mainstream medical treatments of antibiotics, followed by more antiboitics...and just for change of scenery, more antibiotics yet again, I've since gotten through the last 14 months principally with trigger point work, since that has pretty much seemed to be the only option. And of course, I'm not really doing that as effectively as it should be done (since it has to be self-administered), because no professionals here in Australia appears to have the remotest clue about internal trigger point massage.

What I would this thread to be, therefore, is very specific information of treatments which are available to Australians and which do not involve the seemingly stock standard antibiotic treatments. Because at the moment I am completely clueless and have no idea of what is available and where to seek it out. I am only interested in treatments that are looked upon favourably or are endorsed by this website.

Thanks

It would be interesting to contact David Wise and ask if there's anyone he endorses in Australia. Population-wise, Australia is about the same as one American state, and less than half the population of California, and it's isolated too. So not surprising that there are few resources. How much does it cost to fly to San Francisco these days, would be my first thought....

I had actually considered going to the US, but it would be absolutely impossible for me to fund it. I had to retire from full-time work due to long-standing health issues (nothing whatsoever to do with CPPS) and my self-funded income does not do much more than pay the bills and keep me fed. I probably only have about $1000 AUD per year that I could spend on this problem.

It's just not the isolation and small population that is the problem with Australia. It's the conservative, outdated and (quite frankly) dangerous viewpoints as to how to treat male pelvic pain. As soon as you go to any doctor then they have already decided it has to be the prostate and nothing but the prostate. And the only solution is antibiotics, followed by more and more and more of them. These mainstream doctors have caused even more problems with my health thanks to their antibiotic treatments, yet done absolutely nothing to solve the original problem.

The urologist I went to was pathetic. It's pathetic to see someone who is completely clueless yet tries to maintain an air of having a clue. Needless to say, when he decided the correct treatment was not one - but two dangerous antibiotics at the same time, I never went back again.

JonP wrote:It's pathetic to see someone who is completely clueless yet tries to maintain an air of having a clue.

So true, and an experience we have all had, I'd say.

I think for you the answer is self-treatment with some implement using the A HEADACHE IN THE PELVIS book, relaxation tapes, benzos (occasional) through local doc, ENDEP (amitriptyline) thru local doc. And Quercetin.

webslave wrote:

JonP wrote:It's pathetic to see someone who is completely clueless yet tries to maintain an air of having a clue.

So true, and an experience we have all had, I'd say.

The doctor thing with pelvic pain is not unusual no matter where you are.

webslave wrote:

JonP wrote:It's pathetic to see someone who is completely clueless yet tries to maintain an air of having a clue.

So true, and an experience we have all had, I'd say.

I think for you the answer is self-treatment with some implement using the A HEADACHE IN THE PELVIS book, relaxation tapes, benzos (occasional) through local doc, ENDEP (amitriptyline) thru local doc. And Quercetin.

I bought that 7 inch wand that NoMoPain recommended. It has been helpful in identifying trigger points beyond the (small) reach of my fingers. That said, I think it is possibly a tad too narrow - it's less than the typical index finger thickness of a slightly-built female and I'd like it a bit thicker there (otherwise it is hard to use the recommended pressure because it becomes too concentrated on a very small contact patch.

Haven't really looked into medications too much. I did try Quercetin, but just for a couple of weeks. I actually thought it made things worse and I stopped taking it. But now I have been reading that getting worse might be normal in some cases.

Yes, give any accredited quercetin product another go, helped me a LOT. Seriously.

If the item is too narrow, try using a Theracane (CPPSdad had great success) — see my sig for link.

Are you using the Theracane internally as well?!

btw, I can vouch for those cushions from the IC shop in your link (maybe you can update the link title, since they aren't really donut cushions).

Anyway I bought one for the car and one for my computer chair and now have more on order so I don't have to move them from chair to chair or car to car. They have made a huge difference for any activities where I need to be seated, as one of my trigger points is only about 6mm above the anus, so the cushions are a huge help. I don't like the blue covers though - they just increase tension - so I followed their advice and use pillow slips.

Notwithstanding all these helpful self-help techniques, I'd still love to hear from Australians who have visited specific Australian practitioners (by name), whether they be urologists, PT, etc, and have achieved success without being prescribed antibiotics.

No, not using the Theracane, my case cleared up completely about 9 years ago, but I do have a Theracane for my shoulders.

As for recommendations about Australian urologists, all I can say is I would dissuade anyone from see Dr Nugent of Deakin, Canberra, based on a negative report I received.

I think a problem with Australian urologists and medical practitioners are that even though they never agree with each other, they are always right.

Hi Mate, Let's start with which state your in ? Second, let me suggest you seek out Colorectal specialists instead of of Uro's - in my experience their on different pages with this thing.

As for GP''s, well mate it's very hard to find any willing to prescribe say something like Valium, etc, even my GP of 25 years thinks that 2 X 5mg of Val's a day is enough to keep it under control - for me it's not, so now I'm on a 5 month waiting list for a Chronic Pain specialist. I'm in Melbourne and have just come back from visiting another GP who does prescribe the heavy stuff - but the best thing I got out of him was 2 free sample packs of Lyrica, the same sh*t as what my GP gave me last week. Seems like the Reps at Pfizer have been very busy with this stuff recently.

Now if Meds aren't your thing and your after therapists ;

Melb : Women & Mens Health Physio ( TPRT )
Malvern, Vic. +61 3 9822 4438

Syd : Royal North Shore Hospital Dep't of pain mgt
+61 2 992 68423

Syd : http://www.sydneycolorectal.com.au

They have a few locations.


That's all the one's I know of mate.

Likewise, I'm sick of GP's & specialists alike who dont have the balls to prescribe stuff like OXYCONTIN, which I know does help but it's a heavy drug.

Hope this helps, good luck with it.

BSB

JonP,

I'm in Perth and I can recommend Judith Thompson on Body Logic in Shenton Park. She does internal work and she's pretty good. For a Uro here, I'd recommend Jessica Yin. She's up front is saying there's jackshit she can do but she's willing to refer you on to Psychs and Physios.

I'd also recommend Richard Yin (no relation) he's a GP who does pain stuff. He also does some alternative shit that I wasn't into, but he's happy to help you manage the pain with Endep, Neurontin (only as necessary) and physio. He's also at the Body Logic clinic in Shenton Park.

If you're in WA, or close, then this might help.