Does anyone share my symptoms?

[JonP]

Hi all,

As my first post here I am very curious as to whether anyone else shares the symptoms I have. By that I also mean that you would not have any additional symptoms other than what I have listed. Oh, and apologies for a long post.

My reason for asking is that my symptoms seem to be quite rare, and infact a urologist the week before last described my symptoms as "very unusual".

Firstly, a bit of background. I first developed perineal pain around August last year. It only occurred when I was sitting down, and even then only after sitting for long periods. At first I simply thought I had aggravated some soft tissue in that area from the prolonged sitting. Gradually, however, the problem worsened. Six weeks after the first symptoms appeared, it was clear this was not going to go away, so I made an appointment to see my GP, telling him that I suspected I might have a prostate problem. In saying that, though, I did not exhibit most of the classic symptoms of prostatitis - all I had was a heck of a lot of perineal pain (which by now made sitting and driving excruciating) plus an intermittent feeling of urgency. I did not, however, have any problems whatsoever urinating, nor any accompanying pain when urinating. In fact, my urination is as good as it has ever been at any age.

The GP diagnosed prostatitis (he said the prostate felt quite inflamed and "boggy"). He put me on Ciproxen which caused horrific side effects. He did persuade me, however to finish the course (I wish I hadn't, since it appears to have left me with permanent tinnitus). At the end of that course, he said the prostate felt much better, and although I was no longer in near agony, I still had a lot of perineal discomfort and a feeling of fullness in the bladder when it was not full.

I was then put on Keflex which seemed to control pelvic the pain, but the control was not consistent (sometimes it would feel 90%, at other times it would feel 50%). Whilst it definitely helped with the perineal pain, it did not really help the feeling of wanting to go to the toilet when the bladder was not full. When I finally went off the Keflex, both my original symptoms returned, but not as bad as they originally were. In other words, the problem was no longer excruciating, however it was still enough to dominate my life. Unfortunately, too, the Keflex made my tinnitus worse.

Right now I am on no prescription medication for the condition at all. I have changed doctors, however, since the Ciproxen episode has left a very sour taste in my mouth. I think my old doctor was lacking in judgement when asking me to continue the full course (I reported terrible side effects two days after starting the course, including loud tinnitus, insomnia, a feeling of wanting to inflicted self harm and to also destroy the interior walls of my house for some reason). I have now become extremely circumspect about antibiotics and in fact any ototoxic substances. My pelvic symptoms are bad enough - if my tinnitus were to get worse as well, I would become a serious basket case.

Anyway, just before leaving the first doctor, I honoured an appointment with a urologist. Within 2 minutes of the consult he was already literally reaching for his prescription pad. He wanted to give me not one, but two antibiotics at once. After he said he also wanted to do a cystoscopy, I panicked (quietly - to myself) even more. Not the thought of the test itself - but the fact that if I were unfortunate enough to get an infection from that test, that might mean yet more antibiotics. For goodness sake, I have been on antibiotics virtually non-stop for 7 months now! My immune system must be shot, apart from the side effects!

As things stand, I have the following three symptoms:

1. Perineal pain that ranges from almost non-existent to extremely uncomfortable. It is usually very minor or non-existent when I get up in the morning, and becomes extremely painful when driving (even for a quick drive to the shops) or when sitting for more than about 10 minutes.

2. Tenderness just above the pubic bone. This tenderness is in direct proportion to my third symptom.

3. A feeling of urgency. As mentioned above, if there is no pubic bone tenderness then there is no urgency. The more tender, the more urgent.

But that's it. Nothing else. My urine stream is the most powerful I can ever remember it being, there is no pain specifically induced by either urination or ejaculation (although excessive ejaculation - for me that means more frequent than every other day - seems to sometimes make the condition flare up, but that is resolved with ibuprofen). Perhaps these symptoms (and the lack of any others) is why that urologist said my problem was unusual.

Anyway, at present I have told my new doctor that I would first like to investigate non-mainstream medical options to cure my problem and that I only wish to resort to mainstream medicine if I feel I am getting nowhere. Rightly or wrongly, I am a little pessimistic about mainstream urology. It seems that these doctors can't help themselves - from my own experience and what I have read it's all about procedures and antibiotics. I'll submit if I have to, but only after all my other attempts have failed. The ultrasound and bacterial tests I have had thus far are fine - they don't have any risk of side-effects. But once I am in the hands of a urologist, I will be quite worried about such things.

Needless to say, like most of you here this condition has taken hold of my life to the extent that I can't even drive or sit down for more than 10 minutes (I have been typing this alternately standing and kneeling!).

I have a few things already up my sleve to try (rectal and prostate massage, myofascial release / trigger points, Quercetin, etc) but right now I am just curious to see if anyone else presents similarly. It seems that most of you have urination problems of some kind, but I don't apart from feeling "urgent" in the part of the bladder situated around the top of the pubic bone.

[webslave]

The fact that your symptoms are so strongly associated with sitting makes me think that it's possible, but by no means certain, that you are one of the rare PNE cases:
https://ucpps.men/pudendal-nerve-entrapment-pne

[JonP]

Hi webslave,

Thanks for the reply. I had thought about the possibility of PNE, and whilst I wouldn't dismiss it, I feel my problem is likely to be more common. The reasons I feel this to be the case are that I don't suffer pain immediately on sitting and that I don't suffer from penile numbness at all. For example, I had tonsillitis at the beginning of the year and I was in bed for 5 days. After I started moving around again I did not have any significant chronic prostatitis / chronic pelvic pain syndrome symptoms - well by that I mean that I felt maybe 90%. I could also sit down for long periods without aggravating anything. I even managed to go on a 3 hour return train trip to the city and back without any problems. Infact my latest flare up seems to have been preceeded by a very long session at my computer a couple of weeks ago. But once this aggravation sets itself off, I can be sensitive for many weeks at a time.

I certainly think the nerve could be irritated in some way though - even things like wearing underwear can often make the symptoms a lot worse once a flair up has begun. What I have found though, is that massaging the area at the top of the pubic bone helps, as does massaging the muscles above the sphincter but below the prostate. I've found those particular muscles to be chronically tensed more than they have to be and they are very sensitive when being touched.

My feeling is that when lying in bed I am far more easily able to relax my pelvic floor muscles than I can when I am sitting. And when I say that driving is the worst of all, when you think about it, you've got all the bumps in the road, all that foot work with the pedals and often stress as well - no wonder it is so hard to relax the pelvic floor in that situation. But then if I am watching television in a recliner seat, the symptoms are much more mild - only a bit worse than when lying in bed.

Of course I have ordered the Headache in the Pelvis book which I hope to get in a few weeks time. At this stage I am working on the belief that my symptoms are caused by tension in the pelvic floor and I am going to work on a treatment program based around that in the first instance. There are also things that make it a lot worse (like the advice given by a certain Ph. D doctor in a certain book) which I can clearly avoid. Plus I really have to lose weight - I can't believe that my excess weight pushing on the pelvic floor is helping. I really have to lose about 20Kg.

Incidentally, I just wanted to ask about those pelvic cushions. I ordered one late last year (the 2 inch firm model). It worked fine for the first few weeks but then the foam compressed too much, making it all but useless. I was surprised because my body weight fell within the limit recommended for that model. Anyway, I have ordered the 3 inch firm cushion this time around. Maybe that might work better, but these cushions do seem to compress a lot (and permanently) after the first few weeks of use.

[webslave]

Avoiding sitting is key for you then. Can you use a laidback laptop?



http://www.laptop-laidback.com/

[JonP]

Thinking about that - yes. I was thinking of using a wireless router on my PC and a wireless NIC in a laptop (bedroom and workplace are in adjacent rooms). It would work great - it's just a matter of the cost though

[perth]

JonP,

Your symptoms are similar to mine. I had penile pain (and hypersensitivity) and pain above the pubic bone. Eventually this led to bladder pain. Drug wise, the best help I've had is from endep which numbs the area.

On the SP front, I went to Dr Wise's retreat in Cal and enjoyed it. I think it's worth noting that for the two weeks I was there (I live in OZ) I was pretty much symptom free. The penile pain niggled a little but was mostly gone. Since I've returned to work and family probs, the pain returned and I have struggled to use the SP to tackle it. So that's a plug for the SP, and for endep from someone with similar symptoms.

Good luck,
Perth

[JonP]

Hi Perth,


Well I have to commend you for having made the trip to the States to undergo the SP treatment. For us Aussies, it seems to be the only option if that is the desired method of treatment. Any therapist I have thus far contacted in Australia (with specific reference to chronic prostatitis / chronic pelvic pain syndrome and SP) simply has never heard of it, does not have the necessary training and qualifications, nor (on the basis of their replies) an adequate understanding of the nuances of true CPPS.

Unfortunately I simply cannot afford to travel to undergo the treatment in the States, so I just have to make do with my own resources. Plain and simple I just do not have anything like the money needed.

I have to say too, that I felt ever so slightly let-down after getting my copy of Headache in the Pelvis. Don't get me wrong - it was an incredibly illuminating read and is still a must-read for anyone with chronic prostatitis / chronic pelvic pain syndrome - it gave me a lot of ideas and I have good mind to buy more copies and post them to some narrow-minded doctors I know But I guess I was hoping that it might have been a bit more of a "self help" book, but it rather struck me more as a 400 page, super-detailed advertisement for the SP (and there is nothing wrong with that, since IMHO, SP would solve my problems 100% - I am absolutely sure of that. But I just wonder what percentage of HITP purchasers are ever going to be in a position to attend the actual training course at Stanford???).

Still, I am lucky in a few respects - firstly, I was taught deep relaxation by a psychologist many years ago. Interestingly, the HITP book mentions "acceptance" of the pain and this principle has been used in psychology for many years to treat other afflictions (for example, stress and panic attacks). Actually, when reading HITP, I was quite struck by the parallels in philosophy between, for example, the writings of Dr. Claire Weeks (in respect of anxiety, panic attacks, etc) and the authors of HITP.

Secondly, due to some extensive injuries I have suffered in the distant past, I have had a lot of previous "user" training by physiotherapists and rehabilitation therapists. In the end, a lot the principles I learned there I can directly apply to my CPPS. I was a bit scared to try and apply those principles, but after reading HITP I noticed - again - strong parallels between the latter's treatment philosophies and my own experience (or exposure to and learning from other people's experience).

Even after three days, I have noticed a marked improvement over a condition that has been chronically bad with next to no let up for 8 months. Certainly a lot of that is simply the placebo effect, but also my change in attitude from a feeling of defeat to one of optimism. From feeling four days ago that I would be stuck with debilitating condition for life, I am now optimistic that I can recover to perhaps 90% (even 95%) - and all through my own actions based on what I have learned in that book and on these forums. Over the last 48 hours, for example, I have only had to relieve myself 7 times, which is actually a life-time record for me. And I have successfully identified the major trigger points causing my inability to sit down. I have done more pain free sitting this last 48 hours than I have in the last month. Even now after sitting for more than 8 hours today my pain in the pelvis is less than 1 out of 10. Then again, earlier today it was about 4 out of ten, and not surprisingly that was after an episode of prolonged (and unavoidable) stress.

Clearly I am going extremely well at present - it will no doubt continue to wax and wane, but I am quite patient. Perhaps one of the most useful tips to come out of the HITP book has been the moment to moment relaxation philosophy. I think that tip alone has made a huge improvement - about as much as the rectal trigger points I have found.

One thing is certain though. If I felt as good all the time as I do right now, I would pronounce myself all but cured. And over the next 24 months, I can keep referring back to this post as my progress continues with it's inevitable ups and downs.

[scoobysnacks]

Glad to see you are doing better.

About the book. I agree with you if you only read it once. You have to read it like you are going to be tested on it. Really digest the material. Take it a chapter by chapter and try to perfect the techniques. I've been to SP and there is enough in there on relaxation if you really study. But, much like you, upon one reading I found it hard to apply. However, I have read and re-read and I think I could have applied it without the trip. Though the trip was truly invaluable as I was taught how to self treat internally, which was completely doing wrong.

good luck,

Ss

[perth]

Great news JonP. I thought the same when I read the HITP. While I agree with Scooby's point about absorbing the book, I found it a bit too vague to apply without the visit. Perhaps the 4th edition has better pics and instructions?

I have actually found some good people in Perth. A urologist who was sympathetic to pelvic floor work, and a physio who does pelvic floor stuff. It's not HITP stuff, but she's pretty good.

I also find a massage by a TP guy (which includes a brutal "massage") really helpful. It uncoils all those muscles that tighten in response to the pain. He doesn't do internal work, but he does my abs (really paniful) and my back and glutes. Well worth it.

cheers,

Perth

[JonP]

Does the physio in Perth you mention do intra-rectal work or only external?

[perth]

She does internal work. She mainly sees women for pelvic floor probs, but I was sent to her by my enlightened (and female) urologist. She does one really painful trigger point for me and it's internal. The ones near my prostate she's not going to try for (I'm assuming they're up there - no one has found any yet). The external ones she leaves for my TP masher. She's really nice and very gentle. It costs about $70 for 1/2 and hour.

[JonP]

Thanks Perth. I will keep all this in mind. Trips to Perth are possible as opposed to a trip to the States. At this stage I'm going to see how I go with things myself over the next 6 months or so (given the promising, temporary improvements thus far). However I have this feeling that I might not possibly get to 100% on my own, so it's good from a psychological point of view to always have plans for future treatment. It might even be possible that your urologist might know some east coast colleagues who share the same philosophies that she does.

I actually feel that I might have relatively minor trigger points in the anterior levator ani, given my symptoms and given that I have felt tender during DRE, (but not on the prostate itself which is painless when massaged). But of couse no doctor or urologist has actually bothered to check those particular muscles, only the prostate itself which always gets 100% bill of health. Unfortunately I can't get my fingers far enough to manipulate the anterior levator ani and I'm sure not going to attempt to manually manipulate them with any sort of implement.

Incidentally, although I don't have the 3rd and 4th editions of HITP to directly compare, I don't think there are any improvements in the latest edition as regards male pelvic trigger point release diagrams and the accompanying explanations. Certainly the 4th edition preface does not mention any specific changes in that particular regard - it's mainly female diagrams and explanations that appear to have been added. The 4th edition does however appear to offer detailed explanations regarding the pressure to be used in trigger point release. If there are other significant differences in these particular respects then I am sure someone will correct me.

[scoobysnacks]

the anterior levator ani can be reached.

This is how I hit one side.

I put the right leg up on the toilet. Loob up the entire middle finger of the same hand as the leg that is propped, so here its the right. Take your arm down along the outside of your buttocks leading to the anus. I insert the entire middle finger but as I'm doing this I curl it back towards me so that its hooked over the external sphincter and getting back into the muscle. It can be done. This is how tim sawyer taught me.

I'm to the point that if I do this treatment and then take a .5 Ativan I am completley symptomless, but with working and sitting all day, my symptoms return. I'm hoping with continuallypracticing the protocol these muscles will one day stay relaxed.

Sometimes I fear though that these are much like the back in that once they are tense and messed up they are never really the same. I hope thats not true.

Anyways,

Regards,

Ss

[perth]

Thanks Scooby. I'm going to try that. Probably the only thing left off those instructions is "lock the bathroom door first".

[JonP]

Sometimes I fear though that these are much like the back in that once they are tense and messed up they are never really the same. I hope thats not true

Hi Scoobysnacks,

Well it's interesting that while our affliction is known as a headache in the pelvis, having suffered terribly from tennis elbow ten years ago, I rather prefer to call it "tennis elbow in the pelvis". The pain and the effect on the quality of life is just as bad in each case and very similar in quality, especially in my case where I practically lost the use of my left arm and had very little use of my right arm. I could not even type for more than a year.

I was very miserable obviously and wondered if I would ever get better. It did in fact take hundreds of physio sessions (most of them done myself after a couple of months training by a qualified physio) and about 5 years for it to go away. But even though I say it is cured, I can sometimes feel a very vague "twang" that - whilst not at all painful - is a signal that I have to slow down a bit. I have never ever had a flare up worth worrying about in the last 5 years, and I am sure it will never flare up again too.

I tend to think the pelvis issues will work out the same. I believe I can get to a point where it won't affect the quality of my life, but I will always get "early warning" signs that someone might not get who never had it to begin with.

In a way, I see this as an advantage. If we don't feel 100%, but maybe 95% - 99%, we can do something about it well before the chance of any flare ups. The problem with being 100% all the time is that you quickly forget about the problem and can slacken up on everything you did to keep it at bay. And then a flare up can hit you like a Mack truck.