Was: Feeling Hopeless...Now: Feeling Hopeful

[bellowbellow]

I don't know if this is an appropriate use of this forum or not.... I've been suffering from prostatitis for the past six years. The first two years were spent going from urologist to urologist and from antibiotic to antibiotic. Each one helped for a short time and then seemed to make the symptoms worse. My symptoms were a weak stream when I urinated, a constant urgency to urinate keeping me up most of the night, some burning at the tip of my penis and a feeling of uncomfortable pressure all the time in my pelvis. I eventually tried acupuncture and had some relief. At the same time (about two years ago) someone suggested I try a garlic supplement, which also seemed to help, though I have never felt normal in that area of my body. I find my erections aren't as hard as before and that the sensation during sex is not as good. Up until my flare-up 4 months ago, besides having psoriasis, my general health was good. I was running everyday between 30min and 60min 5x a week. I never drink alcohol, coffee and I don't smoke. About 4 months ago I was standing at the urinal and I felt some burning when I urinated. The burning continued to get worse over the next few days and weeks and I went to see my urologist, who put me on a series of antibiotics again that only made the symptoms worse. Eventually I stopped taking antibiotics again and my urologist keeps telling me the only way I will get better is if my immune system fights off the infection/flare up. In the three semen and urine cultures I've had, only once has bacteria showed up. Upon physical exam, my prostate is described as boggy. I've had a couple cystoscopies and there is some calcium build-up on my prostate that I was told was normal and my bladder is irritated. I went back to acupuncture again, but it's not helping. The burning at the tip of my penis and between my rectum and scrotum is unremitting and excruciating and lasts all day and night. The only way I can sleep is with heavy-duty pain killers and anti-anxiety meds. Epson salt baths help while I'm in the bath. I've stopped working out because I have no energy. I've been seeing a psychiatrist because I'm depressed. I've tried every combination of naturopathic medication available (my brother is a well-known naturopath). My marriage and work is suffering because I can't concentrate on anything but the pain. I honestly don't know what to do. I've been reading this website for hours and I think I should begin a stretching regimen, but I'm not sure which one or where to begin. I also think I should consider some type of drainage regimen, but again I don't know where to begin. Anyway, besides the therapeutic value in writing this and reading about others who have improved dramatically, I guess I'm really looking for some help in getting over this prolonged acute phase I'm going through. It seems inhuman to me that I could be left by my doctor in so much pain for so long. If anyone can give me some help in calming things down and beginning my recovery I would be eternally greatful. Thanks for reading this rather long post.

[webslave]

It seems inhuman to me that I could be left by my doctor in so much pain for so long.

A common experience, unfortunately.

You describe experiences most of us have had to a greater or lesser extent.

Make sure you get your free sample bottle of any accredited quercetin product to try (click on ad in top right hand corner of this page).

There are also many other things for you to try. Don't take any more antibiotics.

Welcome to the forum.

[Astrotitan]

Bellow, have you had urine flow tests done? Have you tried alpha blockers?

I feel for you bellow, I know what its like. Try to stay positive and do start a stretching and TP regime. Get the book AHIP, its helped me heaps.

[benzo]

Can you tell if your prostate is inflamed? Does it have hypervascularity? This can show up on a colour Doppler scan (TRUS).

[Link]

It sounds familiar, your with friends here... Could you share a little bit about your routine?...

Exercise
Supplements
Diet
Stress
Occupation
Meds
Stretching

I think many people who have this disease decide to attack this thing on all fronts and stick to routines, that over time lessen symptoms and make life very liveable... You can get there too!!!

[carld]

Unfortunately, Urologists don't know 7#$%$#@?!!!! about what to do about this condition. It has so many different symptoms. Each person is effected differently. The way I see it, there is a combination of syptoms of either pain or LUTS. (lower urinary tract syptoms). Bellow you are not alone, there is some sort of pelvic dysfunction most likely associated with stress/anxiety. Most of us here have this disposition to being prone to Anxiety for what ever reason. By reading all of the posts you should be OK with your approach on this condition. Stay away from antibiotics!like Webslave said. It seems there may be an IC connection if your bladder showed irratation? Not sure about that. Did your EPS of your prostate show white blood cells in the fluid?

Stress management, like yoga and breathing.

supplements from Quercetin suppliers like any accredited quercetin product

Please get A Headache In The Pelvis and locate a PT that is familiar with pelvic floor dysfunction. Most likely this is your key which has been quite helpful to many men here. Look into Elavil with your doctor to see if this can help you. Be careful with the meds.

Look into Uroxatral to relax the muscles in the prostate and bladder neck to help with the urinary isues. There is lots to do and there is not a magic bullet to take to make it go away. It takes effort and time to get better and you will. Look for food intolerances and antihistamines to see if this is helpful. Stay away from decongestants. Educate your Wife on what is going on here so She understands that this is a real issue and that there is light at the end of the tunnel. Hang in there. I'm not a doctor and you should consult with your doctor on these issues.

[scoobysnacks]

All of your symptoms seem consistent with chronic prostatitis / chronic pelvic pain syndrome caused by muscle tension in the pelvis. A boggy, irritated prostate could be caused from really bad trigger points near the prostate that has constricted blood flow over time to this area.

I postulate that running kept the blood flow and muscles loose enought to keep severe symptoms at bay for some time, but now, maybe due to a new stress, social issues, whatever tenses you, has caused the symptoms to hit you full force. At some point, this has happened to us all here.

The good thing, is that your symptoms sound so much in line with the usual chronic prostatitis / chronic pelvic pain syndrome that I believe with trigger point work, stretching, warm baths, phytotherapy, and relaxation you can improve dramatically, but you have to dedicate to it. I believe recovery takes a decent amount of time because none of us are skilled in the above, and it takes time to develop such.

Please do a search for my recent posts about trigger point work, relaxation, stretching, and my trip to Stanford to be trained in the above.

Do you experience pain or flares after sex?

Have you tried valium/lorazepam, does it help relieve symptoms, further suggesting muscle issues?

Have you tried an alpha blocker for the boggy, which may result in an enlarged prostate, for some relief, though it won't be total relief in most cases if chronic prostatitis / chronic pelvic pain syndrome is the culprit?

Have you tried phytotherapy, such as Quercetin or any accredited quercetin product which you can link to from this board.

Have you read AHIP?

Regards,

SS

[bellowbellow]

Thanks Webslave, Link, Benzo, Astrotitan for the words of encouragement. It means a lot to me. I don't believe I've ever tried to take control of this illness the way many of you have since I've been stuck in a "why me?" rut for so long. I'll try to answer your questions. Recently I had an MRI (I was told I'm one of the first) done of my prostate... the findings were that it was not inflamed, no hypervascularity, however some of the lymph nodes around it (in the pelvis) were swollen due to infection... I've had urine-flow tests done, but I don't know the results; I do know that my urine just trickles out most of the time leaving me feeling like I still have to pee... I've tried Flomax , but felt horrible on it and stopped. I was recently prescribed a very low dose (1mg) of Terazosin by my family doctor (because my urologist is away for a couple weeks) who told me I could try it if the pain becomes intolerable even with the pain-killers I'm taking. I'd like to know what alpha-blockers have worked for you? I go for acupuncture 3x a week; it was helping for a while, but since I actually got up the nerve to ejaculate last Thursday (I had to do it twice to get any sperm to come out) my symptoms have been more acute. My brother, who is a naturopath, is going to put me on a 2x per week mega-vitamin intravenous regimen, though I don't think I have the time to do anything else without actually quitting my job (in fact trying to treat myself has become a source of stress due to the time factor). I've stopped exercising; I was used to running quite a bit, even marathons and half-marathons. I'm always stiff (interestingly enough, a lot of my stiffness is in my groin area); never did any stretching until last night when I began trying some of the stretches that I read about in the forum and I'm going to begin attending yoga. I also ordered the HITP book. I take Quercetin, cranberry, nettles, vitamin c, vitamin e, b-complex, pumpkin-seed oil and concentrated liquid chlorophyll. I don't drink enough water. In order to sleep at night I take Ativan and 1 percocet and recently my psychiatrist put me on an anti-depressant, ciprolax. I try to eat mostly raw foods, no spices, no sugar, nothing fried, but I can go on pasta or cheese binges. To most people my job appears stressful, however I enjoy most days at work; I'm a senior manager at a child welfare agency. I'm afraid my marriage is a source of stress for me presently, mostly because I'm so wrapped up in myself and the constant pain and because the thought of intimacy or sex is the furthest thing from my mind. I hope I've answered all your questions. Again, thanks for the very kind words of encouragement... I'm not sure what I'd do without this forum right now. If any of you have any other suggestions, they are much, much appreciated.

[bellowbellow]

Carld, Scoobysnacks...While I was writing my previous post, both of you were offering some very kind suggestions.. they are much appreciated... I'm just learning about all of these alternate treatments and have never considered physiotherapy... perhaps something in my previous post would suggest a course of treatment to either of you that you would recommend to me. Thanks again. Your understanding means a lot to me.

[webslave]

Recently I had an MRI (I was told I'm one of the first) done of my prostate

I had an MRI of my prostate done over a decade ago. Not sure why you think you're the first ...?

... the findings were that it was not inflamed, no hypervascularity

You need to use doppler to test vascularity properly.

... however some of the lymph nodes around it (in the pelvis) were swollen due to infection...

One of my most prominent symptoms was swollen and painful lymph nodes, but I had no infection, so don't assume sore lymph nodes = infection. These lymph nodes indicate that you probably have an element of chronic fatigue syndrome (CFS) as part of your CPPS, just like I did.

I'd like to know what alpha-blockers have worked for you?

You have to take alpha blockers for minimum 3 months to make sure you get full benefit (I couldn't use them at all because they exacerbated my hiatus hernia symptoms).

2x per week mega-vitamin intravenous regimen

I wouldn't advise doing that more than once or twice. Some vitamins are toxic in excess.

I'm always stiff (interestingly enough, a lot of my stiffness is in my groin area);

Just like I used to be, this is a neuromuscular, Trigger Point symptom.

In order to sleep at night I take Ativan and 1 percocet and recently my psychiatrist put me on an anti-depressant, ciprolax.

The percocet (and any opioid) can make matters worse by activating mast cells. viewtopic.php?t=3698

I can go on pasta or cheese binges.

Eliminate both gluten and milk containing foods for a month, as a trial. Gluten was a key irritating factor for me, and quite a few other posters.

[carld]

Bellow, hang in there. I can relate to that burning feeling in the perineum. I think I went about 4 months with this fire in my crotch. It was insane!!! The nights up all night and not able to concentrate on your life, wife , kids, job and everyday living. I have found that Webslave, Scooby and Kevin814 have been key to my steady improvement. There are many others as well when I think about all the posts in the past that I read that pertained to my symptoms. You are not alone by any stretch and for every cause there is an effect. What I mean is tension is key to this problem. It manifests in so many ways. Men with our condition are typically but not always go getter guys that are in 5th gear and want to charge through life. Funny thing this is, that because we are go getter type people, we can really work hard at getting better with this condition. Thing is , it's our go getter personality that cause this wretched thing in the first place! That's what cracks me up. Now this doesn't in any way mean that only hard charging dudes get this. Any man can get it based on their whole pelvic floor situation and how we deal with stress and anxiety. Just know you will get better if you dedicate yourself to it. PT and stretching is the way to go. Look into a Theracane. Still waiting for mine that I ordered last week. CPPSDAD has had great success with it. Cheers 2007 will be the year for healing for all of us and understanding about ourselves and how we can grow and be better Men because of it.

[rider fan]

Welcome Bellow. Lots of good advice here, which I won't repeat. I will share one thing that's helped me that I don't think has been mentioned.

Try to pay attention to how much you are clenching and tensing your pelvis and abdomen during the day. Try to focus on relaxing these areas, which I know is counter-intuitive when you are in pain.

In any case, I hope you've bought AHIP already, or are having it express delivered to you...

[scoobysnacks]

Bellow,

Wait for your AHIP to arrive, then study the chapter showing diagrams of the pelvic floor, symptoms, and the associated Trps.

Where are you located? In the meantime I would search on this site, or post a topic for a PT in your area. I would make contact with them, discuss your issues, and set an appt. Then I would take the AHIP with you flagging the Trps that you think could be the cause of your symptoms based on the diagrams. Have the PT palpatate these areas to see if they are painful. Normal tissue will not be painful, some areas, maybe uncomfortable when touched, but if they result in pain, burning, they contain Trps, or tight muscled areas where blood flow has been constricted.

In the meantime, I would take as many baths as needed per day, at least morning and night. And stretch for at least 10-20 mins three times per day. You can also do an internet search for Trps in the abdomen and see if you can find some of Davies diagrams for the abdomen reproduced online, and massage these areas yourself and see if these areas are soar. I suspect with all your urge/frequency issues you may have some lower abdomen Trps. You will need to apply firm pressure in these areas to find them. You can't simply skim over the areas. Its worth a try. If you find painful areas or bee-bee feelings in the taught bands of your muscles, hold these areas for 30-90 seconds with enough pressure for 5-7 pain scale. Then massage them. This may reproduce symptoms, or cause flares, but it will be necesssary for a full recovery.

Hang in there. You would do well to at least heed the advice webslave provided since your symptoms mimic his in some ways.

Regards,

SS

[benzo]

MRI of the prostate is not that uncommon: I had one myself but the findings didn't differ from those on the Doppler TRUS. During a flareup I have hypervascularity which is a telltale sign for an inflamed prostate. Still it's good to rule other things out and I think a MRI gives a pretty good image about what's going on in and around your prostate.
About your marriage: I think that a lot of people here have the luck of having very caring partners. It might be an blunt thing to ask but what's your wife attitude on this? I can imagine that a partner reacting in an adverse manner is not going to speed up the healing process since it only causes more stress.
I too find myself worrying a lot about the impact of all this on my relationship in spite of having a wonderful gf and a fulfilling sex life. I think a lot of this fear goes on in our heads and is based on absurd assumptions which only feed the fear cycle.

[bellowbellow]

Thank you so much everyone for the practical suggestions and kind words... I've spent many nights over the past few months despairing about whether I'll ever be able to have sex again or if I'll ever be pain-free again and crying or holding back tears and have even ended up in the hospital when I just couldn't manage the pain any longer.... I've received more treatment options, empathy, compassion and hope being part of this forum for the past two days than I have from my urologist over the past year... while the burning pain has not abated, at least I can become more proactive about doing something about it rather than waiting for the next medication to fail... you've helped me make some important decisions: I've ordered A Headache in the Pelvis, I'm going to stretch every morning and afternoon, I'm going to learn my trigger points and find a good physiotherapist to help me, I'm going to go to Yoga 2x per week, I'm going to really talk to my wife for the first time about the pain and stress I'm undergoing and my feelings of hopelessness and depression, I'm going to really examine my life and the areas which are giving me stress and then address those areas, I'm going to demand that my urologist takes more than the five minutes he usually gives me and explores a number of the treatment options I've read about in this forum and I'm going to continue to explore and learn from those on the forum that have been in my situation and have found peace and happiness again in their lives...