Starting pelvic treatment after 4 and a half years

[aazzone]

Turns out there’s actually a woman who treats women and men in my hometown.

Is it Debbie Dillon?

[JuanMilo]

Is it Debbie Dillon?

No it’s someone else, why who is she - do you see her?

[JuanMilo]

PE is a temporary condition in all but the rarest of cases. And irritation, inflammation and allodynia can all make PE worse. Temporarily. Your anxiety and obsessiveness about everything to do with your health is also part of the condition. Until you learn to step back from yourself, look down from a height, on your own mind, your own thinking, and see it as disturbed, just like your pelvis is disturbed, you won't make good progress.

The Aneros is a sex toy and not a good way to massage the internal pelvic muscles. Get a Theracane instead.

Hey Webslave, I’m a little bit confused here. After reading those old European urology guidelines for treating CPPS, I wanted to look up the latest ones. I can’t really understand what they’re saying - they talk about treating trigger points but then say there isn’t evidence that either manual therapy or dry needling is better than placebo/no treatment?

https://uroweb.org/guideline/chronic-pelvic-pain/#5

You may have seen that I said I’m going to a new PT next week. She says she’s doing a degree in psychosexual studies and also that she’s ‘moving away from the wand’ for self treatment. I don’t know what to expect with her, but hopefully she can help.

In other news, I have had someone down my ear about a professor here in England who claims that IC is usually an embedded infection that cultures miss - sorry to bring up this line of discussion. The guy I spoke to claims to be almost better after a year of antibiotics. The professor is called James Malone-Lee (figure of controversy as you’ll see) and I spoke to him by email. He claims that he’s successfully treating men with chronic prostatitis. I can’t quite remember exactly what his claims are, but he looks at fresh urine under a microscope for white blood cells and epithelial cells - he claims these are always signs of infection and shouldn’t be in the urine.

He sent me information over and I can attach here if you want to assess his claims. He had a clinic within our national health service and appears to be pushing against urologists through parliament, saying urine cultures are very inaccurate.

Oh last bit of news is that I stopped the graminex and quercetin/bromelain. I took the graminex for over 2 months and the quercetin for almost as long. It wasn’t helping me and I think something in that concoction was actually irritating me when I peed, but I’m not sure what. I’ve been in a big flare for a while and my perineum felt pretty horrid. That feeling has improved now, my urethra feels less irritated. Pretty sure the PE has improved as a result as well.

[webslave]

James Malone-Lee is an old doctor (in his seventies?), used to be a UK army doctor and also spent many years in geriatrics (study of old people). He's completely and utterly out of his depth treating CPPS. This is all simply "CPPS is an infection" redux, something we left behind 20 years ago. Run, don't walk away from fools like this. I won't bother rebutting and debunking his claims, it's not worth my time.

Your reaction to pollen extract probably means that like many people, you are sensitive to it. Stop using it.

Regarding the EU guidelines: I have given up trying to work out why different regions and countries go off on tangents about the issue of CPPS. There is good published science that physical therapy beats placebo. The guideline's conclusion that "There is no evidence that manual techniques are more effective than no treatment" is based on an old 2005 study from an obscure Spanish college. There are much better and more recent sources, so I suspect these guidelines are outdated.

I would completely disregard these guidelines, quite frankly. When you see guidelines compiled by people who are not actively researching the field, you often come across outdated, incorrect and sometimes silly information.

[JuanMilo]

Thank you for your continued insight into all of this webslave! I see my new PT next week and my GP agreed to prescribe me nortriptyline. I’ll let everyone know how the PT appointment goes.

In other news, on FB I coincidentally I ran into one of the guys who claimed to have been ‘cured’ by Malone-Lee. Turns out he hasn’t been cured and had a big relapse, but is going all over Reddit telling everyone Malone-Lee and an American doctor called Bundrick ‘saved’ him. He’s purposely misleading a lot of vulnerable people.

Admin comment: we've seen this before. Often money is changing hands or a discount has been offered for positive reviews.

[aazzone]

No it’s someone else, why who is she - do you see her?

Not anymore but she is very good (South West). Frankly I don't believe in trigger points but it is good to have something to grab to in the darkest moments.

[JuanMilo]

Aazzone, I’ve just seen that you said you believe this is a systemic condition coming from the mind. You might benefit from using the curable app or seeing a mind-body therapist. I’m quite certain the PT I’m going to see also comes at pelvic pain from a mind-body angle, I’ll have to see though.

[aazzone]

Hey buddy, I am mostly ok these days.

TBH ATM it is mostly fatigue/general malaise that gets me now and then, than actual pain but nothing that stops me going along my days.

I have some discomfort but nothing like the pain I used to experience. I still think this is some condition of the mind propagating to the body and vice versa but I believe now I have tools to deal with it: stretching, meditation, fasting, exercise etc. and I don't go into total meltdown like I did initially.

One of the first lesson I got from webslave was that anxiety is your enemy number one and it is absolutely 100% true!

[JuanMilo]

Aazzone, glad to hear it mate, I’m sure given enough time you’ll reverse this. I’ve seen evidence parts of the brain that are changed with chronic pain are also changed with chronic fatigue so there’s a link there, no doubt. I think reversing (or ultimately bypassing?) the process should have an effect on the entire condition.

[JuanMilo]

James Malone-Lee is an old doctor (in his seventies?), used to be a UK army doctor and also spent many years in geriatrics (study of old people). He's completely and utterly out of his depth treating CPPS. This is all simply "CPPS is an infection" redux, something we left behind 20 years ago. Run, don't walk away from fools like this. I won't bother rebutting and debunking his claims, it's not worth my time.

Malone-Lee’s advocates always go on about his alleged success rate, which is constantly ‘cited’ as being 80-90%. I asked him for evidence of this on Twitter and he responded with a study that said taking patients off antibiotics made their symptoms flare, therefore it’s an infection... I really wasn’t expecting such weak ‘evidence’.

https://link.springer.com/article/10.10 ... 018-3846-5

[webslave]

That paper, by Malone Lee, and published in an "open access" journal (read: low quality journal where there is often no peer review and authors PAY to publish their opinions), completely ignores the well-known anti-inflammatory properties of antibiotics. It should never have passed peer review.

Note: Bohannon J. Who’s Afraid of Peer Review? Science, 2013, 342: 60-65 — found that over 50% of the 304 OA (open access) journals accepted a deliberately-fabricated article for publication.

It's very important to be skeptical of papers published in low impact journals with a low SJR. Stick to the prestigious journals with high rankings.

[JuanMilo]

Thank you Webslave. In the end Malone-Lee provided some table from his own practice supposed to have data on patients, claiming most are ‘markedly improved’. Then he claimed they were going to do an RCT at some point. But if they’re publishing weak papers then I can’t see that being of much use.

In other news I saw the new PT. She didn’t get a chance to examine me because she took my whole 9 year history and discussed the events around it as she’s doing her degree in psycho-sexual studies, so she wants to come at it from all angles. She’s having me go back in January for the examination of the internal muscles etc. I was hoping to have that done on the day but I do understand why she didn’t get around to it.

She hasn’t really given me anything to do in the meantime other than telling me to go for a walk each day, do 5-10 mins of belly breathing and to get back stretching again (I took a break for a couple of weeks). Other than that, she indicated that she’d prefer if I didn’t take the nortriptyline as it’d be ideal to get better naturally. What do you think about that? I’ve sort of had to fight to get it prescribed and I’m seeing people have good results with ami/nortriptyline so I thought I should start it tbh. Although I’m not thrilled about the potential for side effects

[webslave]

I would not be happy seeing a PT who does not examine me physically at first interview. They are not psychologists, and taking long verbal histories like a mental health professional is absurd. I would lose confidence in her immediately.

Based on that, I would continue the *triptyline and ignore her advice.

[JuanMilo]

Yeah, thinking about it, I’m not too happy. She said she wants to come at it from a psychological point of view... she will treat trigger points though and she is in my town. So maybe I’ll see her in January and see how that goes. I’ll contact someone else and see if they’re more hands on if it doesn’t go to plan with her.

I started the nortriptyline last night but I couldn’t sleep and then had some intense dreams. I’ll stick with it and see if that improves though. Is this the kind of thing you have to be on long term? Or is there potential for the nerves to heal while you’re on it/treating the condition and then you can come off it? Sorry for all the questions, I know it’s probably massively variable too.

[webslave]

With amitriptyline and associated drugs, it's important to titrate up slowly from a very small dose, say ¼ or less than the recommended dose. Take each dose for 7-10 days before moving up to the next level, e.g. from ¼ to ½ recommended dose.

I wouldn't take it for more than a few months without taking a break of a few months.