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Old 01-18-2011, 11:21 AM   #1
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To anyone who is suffering

Hi Guys,

"Beginning": I wanted to create this post as a message of hope to all of those who are suffering. My bout of "prostatitis" which I believe is completely mislabled (or at least my case was) started about 3 years ago with an infection (urethritis) that was succesfully treated with a course of anti-biotics. Over the next year after the infection I notices an increase in dysfuntion in my pelvic area that started with slightly painful ejaculation and just a feeling that things were not right. During this time I avoided sex as I thought the infection never really went away and did not want to spread it to somebody esle. At about the 2 year mark I met my current girlfriend (and knew that I would have to have intercourse sooner or later) and eventually did (unprotected, which in turn caused A LOT of anxiety) and this shot my symptoms through the roof. I though that I had an infection (when in fact I did not, had many test's to make sure). Although there was "no infection" that the doctors could find, I was in a state of pain in my pelvis that was debilitating: Burning throughout my entire urinary tract, constant urgency and freqency, perenial pain, all the "classic" prostatitis symptoms. Within about a month I made a trip to the doctor and was tested and diagnosed with "chronic non-bacterial prostatis" as no bacteria could be found in my urine. At this time I started to do some research on my new "diagnosis" and found out that it is something that I would more than likely have to deal with for the rest of my life (which caused MORE anxiety and helplesness).

"My Battle": My doctor had perscribed me a 3 week course of anti-biotics to see if they would help at all. To be honest I felt quite better while on the anti-biotics, but after the course was done I would go back to the same debilitating discomfort and tension that was present before. I also started taking a whole whack of natural product aimed at strengthening and curing prostate conditions, all which helped at some point but did not significantly ease the pain. It got to the point where I felt like giving up, just not wanting to be around anymore, and that's when I dedicated myself to finding a way to get better.

"My Cure": I stumbled accross a website "pelvicpainhelp" and started reading some of the articles and videos. I was intrigued by the idea that this whole condition was caused by tight and sore muscles that are fueled by catastrophic and negative/anxious thinking. "It all makes so much sense" I thougth, doctors are telling me that I'll never get better, I am in so much discomfort and pain all day, and this is all feeding my my state of mind and the perception I have of my pelvis in general. Up until the day I came accross this website I thought that my genitals were sick and did not have a good view of them at all, I wanted the doctors to give me something that was going to kill whatever it was down there, but there was nothing to kill at all. It was my view of my pelvis that was keeping me in the state I was in, literally the MOMENT I started accepting the way that I was and stopped fighting it was the MOMENT I started to get better. I am not promoting "A headache in the Pelvis" in any way, but the book honestly saved my life. I now am aware of my tension and discomfort, I accept it, I DO NOT fight it physically or mentally, and I let the Muscles relax. To this day I would say I am about 75% cured. I can go 6-8 hours without a bathroom trip, and can make it through a whole day without getting into a state of hopelesness about my "condition". I have ZERO pain, and a level of discomfort (that is quickly receding) that is easily manageable.

I would highly recommend buying into this belief system, it has helped me beat this thing. If you have any questions, or would like some advise please leave a comment or personal message me (I feel now that I am better I want to help as MANY people as I can beat this).

 
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Old 03-25-2011, 12:00 AM   #2
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canadian13 HB User
Re: To anyone who is suffering

busted011, thanks for the post and happy to hear you're doing well.

I've just ordered "A headache in teh pelvis". I've also just wrote a long post aimed at another member (Ropes end) who also recommends the same book, and as I don't want to re-type everything I will copy & paste some of it here. Really hope you can help. Thanks.

Did your Prostatitus begin with an STD? Mine did not. So far they have not found bacteria in the first urine test, a second was done yesterday, the results will hopefully come in soon. So how does the bacteria or infection start in the prostate?

I have the same symptoms as you except my prostate is inflamed. Yesterday when they did a DRE on me I jumped a foot while screaming. So would that indicate CPPS for me? It feels as though, and I may have this wrong, but it's the prostate which is enlarged/inflamed and pushing against the bladder. So does CPPS say that the prostate is inflamed due to referred pain and causing bladder to feel full even when it isn't?

Although there's considerable pain at times up in my perineum (where the prostate is), I don't think my pelvic floor/"kegel" muscles are tight. It feels to me as though it's the prostate inside, just up above that spot which is inflamed & causing the pain as well as perhaps crowding up the bladder. The pain down there is so bad that I need to sit on a medical doughnut.

Also, if it's CPPS, should I keep drinking lots of water to flush out the "bacteria" (which is non-exsistent)? Or is it better to just drink normal amounts of water so I don't have to pee every frickin' 30-60 mins? Has cranberry juice helped you at all?

That's all for now. Hope you are well.

 
Old 03-25-2011, 01:51 PM   #3
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Re: To anyone who is suffering

Hi Canadian13,

Since I have posted this I am sitting at about 90% better, my bad days now are like my best days when I was symptomatic. I will answer your questions, as well as give you a couple more pionters which have worked wonders for me recently.

Before I begin, I just want to say that before you will start getting better you HAVE to realize that this is all muscular. As much as it seems like an infection (believe me I had all the symptoms under the sun), it is not, plain and simple.

1) Did your Prostatitus begin with an STD?: Yes, my "prostatis" started after an encounter with a woman in which I was diagnosed with and treated for Chlamydia

2) I have the same symptoms as you except my prostate is inflamed. Yesterday when they did a DRE on me I jumped a foot while screaming. So would that indicate CPPS for me? It feels as though, and I may have this wrong, but it's the prostate which is enlarged/inflamed and pushing against the bladder. So does CPPS say that the prostate is inflamed due to referred pain and causing bladder to feel full even when it isn't?:

I felt the exact same way, it may be your prostate or it may not (there are many muscles around the prostate that get inflammed in this condition, you will learn this in the book). After a lot of internal massage and stretching the "prostate" pain gradually faded, try to keep your mind off it and start being more active. Get yourself to a physio therapist (honestly, I just do the internal massaging myself, its a little werid at first but it works wonders).

3)

Although there's considerable pain at times up in my perineum (where the prostate is), I don't think my pelvic floor/"kegel" muscles are tight. It feels to me as though it's the prostate inside, just up above that spot which is inflamed & causing the pain as well as perhaps crowding up the bladder. The pain down there is so bad that I need to sit on a medical doughnut.:

You may not think its tight, but when you start physio, or stick a finger up there yourself to do some massage, you will realize that it is more tight than you may think. as for the pain while sitting down, look up a yoga postition called the "swan" on google, I do this every day and it completely elimiantes the pain when I sit down. I had gotten so bad at one point that I was literally in tears while sitting at work all day, getting up to go to the bathroom every 5 minutes. I stretch daily, completely disregard this condition, keep myself pre-ocupied, and over time doing this - the pain has completely gone away.

4) Also, if it's CPPS, should I keep drinking lots of water to flush out the "bacteria" (which is non-exsistent)? Or is it better to just drink normal amounts of water so I don't have to pee every frickin' 30-60 mins? Has cranberry juice helped you at all?:

I would recommend just keeping to a normal amount of fluid intake. Drinking copius amounts of water only aggrevated my condition when I was symptomatic.


Now, for some pointer that have been working for me:

1) I take a supplement called Q-Urol from Farr Labs, don't know how much this actually helps me (could be a total placebo), but after starting it, it has really helped me (it is a natural anti-inflamitory).

2) THE most important, and I swear by this remedie: make a glass of ginger/turmeric tea everyday. I boil a couple cups of water on the stove, throw in a handfull of finely chopped ginger, add a 1/4 teaspoon of turmeric (can find this at a natural health food store), boil it for 7 minutes and drink. This is a naturaly anti-inflamitory that people have been using in other coutnries for centruies. I has totaly decreased the "swelling" and "fullness" I feel in my pelvix, and has really helped with the urgency feeling.

3) To me, this condition is 75% mental. Of course there is inflamation and something going on in the muscles, but it is our minds and our crazy obsessions of getting better that make us feel the pain we do. Like I said earlier, I have completely disregarded this condition, completely removed it from my mind, and I am almost all better. Just coming back to these boards reminds me of the pain, but I want to help as many people as I can with this because I know the horrors of going through it.


Well, that's all for now. sorry if I was kind of rambling, but I hope it helps. let me know how your doing, I will do anything I can to get you to where I am.

Last edited by moderator2; 03-25-2011 at 02:13 PM.

 
Old 03-26-2011, 09:59 AM   #4
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Re: To anyone who is suffering

Thanks, so much busted011. Really appreciate it.

Over the past 2 days I've done nothing but read up on what you and some others have been talking about (CPPS). And it's really tough to get my mind around the fact that it's a muscle thing. I had my reservations at first but it's starting to make sense to me now.

I've always had really poor posture and as a result have had lower back problems (which might be somewhat responsible for all this), and tight hamstrings, tight hip flexors, and tight or inhibited psosas muscles. So after realizing this, it wouldn't entirely surprise me that the pain in my pelvic floor/perineuim is muscle related. All this time I was totally sure it was the prostate which was inflamed, espcially a couple days ago during my DRE (during which I was in massive pain), but now I can see how it might be possible that chronically tight bands of muscle down there would inflame it and cause more havoc aroudn the bladder & urethra, etc.; or the bands of muscles might be inflamed themselves, pushing on the prostate, bladder & urethra...

What has really completely changed my mind about all this are these videos by Chronic Pain Physio Therapist, Neil Pearson. He teaches other Physio Therapists such as Pelvic Floor Therapists around the world. These 3 videos are about 40 mins each and have really enlightened me. I would say they are an absolute must for EVERYONE suffering from chronic/persistent pain:

I've also taken your advice and started to drink the ginger & tumeric tea in the morning for its anti-inflammatory properties. And I've doubled my intake of Fish Oils. I also plan on incorporating lemons, limes, grapefruit, and other anti-inflammatory foods. I haven't looked at Q-urol, but I will google it.

I've looked for pelvic floor physio therapists in my city and there are a few but it seems like the bulk of their clients are women with bladder/incontinence problems. Will these therapists be able to understand what I have and help?

As for the massage, I'm curious: Do you insert your own finger up your rectum with a lube or something? Do you use a glove? Do you do it lying down on one side? How do you know where to aim for? (A week ago I would not have even known how to ask such personal questions. Funny how things change so quickly). I've ordered the "Headache in Pelvis" book. Does it have instructions on how to self massage? Does it have specific stretches & exercises for the muscles down there?

Thanks so much for your help. I feel sooo much better already!

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Old 03-28-2011, 10:32 AM   #5
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Re: To anyone who is suffering

busted, I got the book yesterday and have already got half way thru it.
I'm feeling nearly 100% better now after a week, and I'm wondering if it's relaxing 'down there' which is responsible, or if it's the antibiotic (Cipro) I'm on.

I feel lucky to have discovered the book so early on. I plan to stay relaxed 'down there' as much as possible.

I had never thought of myself as someone who was tight down there as I don't think of myself as someone who is usually stressed out a tonne or more than normal. For me, I think it was the heavy weightlifting which might be partially responsible and years of poor posture which led to lower back pain & muscle imbalances which I have mentioned before...

My biggest question to you now is:
How long do your bouts or flare ups last usually?
OR is it more like the symptoms are sometimes there but mostly not?

Thanks so much. Hope you're well.

Last edited by canadian13; 03-28-2011 at 10:33 AM.

 
Old 03-29-2011, 11:30 AM   #6
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busted011 HB User
Re: To anyone who is suffering

Hi Canadian13,


Sorry for the delayed reply. So glad to hear you have the book and are feeling so good, I felt the same way when I read the book (just knowing what it is is like 75% of the battle and that calms you right down).

I have been on Cipro as well, and it did make me feel better while I was on it (and many other anti-biotics). I finally realized that this was a total placebo, and when I replaced the meds with the method's in the book I felt much much better than being on any med.

For the question above regarding the internal massage, I was a little uncomfortable talking about it at first but am now totally past that as it has helped me so much. Some poeple throw on a rubber glove, some don't. I usually just use some lube, you can do it in the shower, or standing in the bathroom (wherever you are the most comfortable). The book kind of goes over how to do it, but I honestly just stuck a finger up there and found some points that re-created my symtoms when pressed, and then put some pressure on them for about 30 seconds and then massaged them for about another 30. Did this daily until the trigger points stopped bothering me and then stopped, if they flare up (which they hardly do anymore) I will do another 30-60 seconds of massage and they die down within the next couple of days.

One thing that you HAVE to understand about trigger point release and internal massage is that it WILL flare you up. This will last like 2-3 days in the beginning and be pretty bad (you will think it is doing more harm than good, but really, if you are flaring you are doing it right). If I do flare now, it usually lasts a day and is easily managable with stretching and massage.

The thing that has been crucial to me getting better is just relaxing, the book talks about "paradoxical relaxation", personally I am way to OCD to ever really been able to do this, but I keep myself relaxed in my own way and just don't worry about things. I have talked to LOTS of people with this condition, and the usualy course of recovery is getting to about 80% in the first 4-6 months, then the last 20% can take up to a couple of years. I am at that 80% right now (maybe even more), and have no problem working on this for as long as it takes me to get to 100.

Let me know how you are doing, and don't hesitate to ask if you have any more questions.

 
Old 03-29-2011, 09:21 PM   #7
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Re: To anyone who is suffering

busted, you've been a life saver. Thank you so much.

I feel so fortunate to have found the book so early on in my diagnosis. I never really thought I was the type of person who held tension 'down there' in my pelvic floor. But now that I've been thinking about it for the past 3 days, I've learned how to release it a bit and catch myself through out the day where I am clenching. Learning how to let go and relax down there isn't easy and I have to constantly remind myself to do so. I hope this is key and that my symptoms don't get too bad ever again.

I will try the internal massage tomorrow and report. Thanks for your tips.

Also bought myself a Theracane for massage on back and inner thighs... I'm at least doing half hour of stretches every night: opening up hips, hamstrings, etc. and yesterday afternoon I tried the meditation/relaxation. It's not easy but I believe I can get better at it.

I hope others who have been diagnosed with this will read my experiences here and learn. I really had my reservations about the book ("A headache in the pelvis") but am a believer now. Read it with an open mind and give it a try. And report back here so others can learn.

 
Old 04-07-2011, 04:18 PM   #8
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Re: To anyone who is suffering

Busted, it's been 2 weeks since I was in the ER & I am happy to report I'm feeling 95% better. Been off Cipro for over a week now. You are absolutely right - it's ALL about relaxing down there. I'm so glad to have found the book so early on in - I can't imagine what kind of torture I would currently be in had I not.

I saw the Urologist today and he tried to do a DRE (digital rectal exam) but said my sphincter was incredibly tight, he couldn't even get far enough in to feel the prostate. He is pretty open minded and when I explained "A headache in the Pelvis" he agreed that it was most likely a muscle relaxation thing for me as there was no bacteria found in several tests. He recommended a Pelvic Floor Physical Therapist but that will take 4-6 weeks to see. In the mean time I REALLY need to learn how to relax much more than I thought I was doing down there. I've tried to give myself internal massage with a finger but can't get more than 1 or 1.5 inch so of my finger in there. Is that normal? I've found it's best to do it in a warm bath where I am relaxed. How far would you say you typically get your finger? The urologist sees a lot of sphincters daily and for him to remark that mine was extraordinarily tight makes me realize I'm not nearly as relaxed down there as I need to be. Is there a device or something to buy to insert in the rectum to help loosen it? I'm also doing daily stretches to loosen the hips and hamstrings, etc. It's all helping but the thing at the centre of it all is the chronic tightening of the pelvic floor and I need help in loosening that.

Thanks so much for your help - I really appreciate it!

 
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