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 I really am suffering......please help if you can. 
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
Any update England?


Wed Jun 26, 2013 9:55 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I really am suffering......please help if you can.
Hey David,

Yes I have a few things to add to the thread, eye openers from the consultant Urologist. I'm using my iphone at the minute as I'm away from home till this evening, il update the news then,

England


Thu Jun 27, 2013 7:38 am
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I really am suffering......please help if you can.
Hey guys,

Ok, yesterday 26/06/13 i visited for my appointment with head of Urology. I sat down with my girlfriend in his office and he began to ask if my symptoms had improved atall? My answer was a resounding no, and that i have had no respite or relief over the past 3 months since i last visited. He then gave me a DRE, and also demonstrated ( not physically) how to conduct a prostatic massage. He said of all the many 30 years experience the only real treatment was massage.

His view on the condition was this: We have found no "bugs" present in any of your tests, no cultures have revealed any organisms or bacteria. But that is not to say you dont not have any" -" he believes that there IS a bug that causes prostatitis and that it just has not been identified yet, stating a quote " Like syphilis many years ago there was not a cure, but now we do!" "Prostatitis is exactly the same, in years to come we can kick ass when the or those prostatitis causing organisms are identified and cultured successfully"

I pleaded with him almost begging for him to try a different antibiotic or more surgery just something! but alas he was very sympathetic and told me he hears this very regularly, and that if there was a remedy he would almost certainly do it! He did however tell me that he HAS recommended people with severe prostatitis that has lasted a very long time to prostate removal surgery, but said by now means whatsoever he would even consider it in my case " Its not an option for you" he was extremely clear on that.
But stated that of the 25 people he has sent for the surgery 22 were completely cured, 2 commited suicide and the other has had no relief. I was not suprised......but i was feeling anxious when he told me this, and my girlfriend gripped my hand a little harder at this point.

Sitz baths / pain management / prostatic massage / rest and pilates/yoga were the choices he gave me. Avoid alcohol, spicy foods and drink plenty of water. I could hear what he was saying but i pleaded and i mean pleaded with him again, if there was anything, anything atall that he could do for me, i told him how this was affecting my life and that im going to lose my job and my home, that the condition was beating me, and that i was struggling sometimes so much.....

He sat back in his chair, i was cowering almost at his desk in hope that he would suggest something, he continued to ponder and i mean ponder, and then said " I could try injecting botox?" would you be interested in that? Well i said if the pain management does nothing to help i would! He told me he would be willing to try it, but said that of the 5 people he has injected 5 still remain the same....

I mentioned nerve irritation and pudendal nerve entrapment also, but he dismissed this as nonsense and that sure try it it may help, but that he diddnt have much faith in it.

I thanked him for being honest with me, he told me to most definitely nerve block the pain in my testicle via the pain management team, eat well live healthy and drink loads of water, stretch and take up yoga and pilates. Regular massage at home......and if all else fails call him and he will do the botox injections.


Well guys there you have it. He was blunt straight to the point and honest. There is no cure, there has never been a cure. Its just management and pin relief for young men. He said its just a mystery condition, no idea what causes it and no idea how to successfully treat it. He is in the mindset that its a bug plain and simple. Sure others wont agree, but this coming from a Consultant Urologist of 30 years. It must hold weight in any conversation or text.

Meantime im waiting on my Rheumatology appointment, my profound leg/arm weakness is due to the cipro courses i was placed on, thats the urologist talking. The Rheumatology guy isn't so sure and says its reactive arthritis from a gastro bug i had around the same time being diagnosed with CPPS. Il have to see, its in a week.

Im sorry again for the bad news, but i realy hope that this helps someone, as sadly it doesn't help me. Im 33 and feel like 63, this condition does wipe you out, makes you down and gets on top of you.

Cheers guys
England


Thu Jun 27, 2013 9:32 am
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
Hi England,

Good to hear from you.

I have a lot of sympathy for your situation but I'm disappointed to read that you haven't been to a Osteopath or Chiropractor for a check up.

Know that I was in a much worse position than you and didn't have anyone to hold my hand.

I realised at some point these people aren't going to fix me, I'm going to have to figure this out for myself. I hope you realise that soon.

Maybe, as a former soldier, you are used to taking orders from people in authority. Maybe that's why you keep trusting the opinions of NHS specialists who tell you they don't understand or can treat your issue.

I've taken some time to try to explain a possible cause and solution. If you follow it up, at least you can rule it out.

I hope you get better soon England.

Dig deep and pull out that fighting spirit. Don't give up.

You deserve to be healthy. Fight for it.


Thu Jun 27, 2013 10:50 am
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Joined: Thu Dec 27, 2012 6:15 pm
Posts: 98
Post Re: I really am suffering......please help if you can.
I am so sorry to hear this news. However, I don't buy all of what this specific urologist shared with you. If he is a non believer of pudendal nerve issues I feel he hasn't done his research. There are many well documented university based studies validating this condition. To add to this he recommended Botox injections.....Botox injections is one of the prescribed treatments for pudendal nerve issues.

I urge you to not give up hope. There are many clinics and doctors/urologists in England that are very well educated in pudendal nerve ailments. Pudendal hope network is one.

I want to be clear that I'm not suggesting your ailment is pudendal nerve related. I'm just suggesting dont dismiss it because of this specific urologists beliefs.

Hang in there..... :D


Thu Jun 27, 2013 11:46 am
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Joined: Fri May 17, 2013 2:53 pm
Posts: 340
Post Re: I really am suffering......please help if you can.
Sorry to hear you are still fighting this with no relief. Does any pain medication help? I'm on Tramadol (should be safe for prostate and screw addiction risk), Meloxicam, and Amitriptyline which helps significantly knocking the constant pain down in my testicles, but unfortunately it doesn't get rid of it. I tried Cymbalta at one point, but didn't react well to it and don't know if it could have helped. My pain tends to be in the right testicle and I've found that sleeping on my left side help reduce the pain. I also wear Calvin Klein underwear that hold the testicles in a pouch out and forward which helps them from being jostled to much. I've found that walking and exercise, while painful, seem to dull the pain over the long-run as the nerves get use to the stimulation (I've thought about punching them to see if I could re-calibrate them into understanding what real pain is like - joke). I'll likely end up with a nerve block like you in the near future which is unfortunate, but glad the option exists for me. I'm working from home these days which I'm glad my company is supportive to a limited degree. It has helped out a lot with the stress allowing me to have a more flexible day working around the flares in pain and getting plenty of rest.

At this time my score is about a 22 and on pain killers I can get it down to 12 to 15 depending on the day. It's a crap deal when dealing with constant testicle pain. So far I've dealt with pretty much the full gambit of symptoms, other than urinary stream and ejaculation issues, you can have with this ailment and testicle pain is the worse. The golf ball feeling is second worse, but it doesn't hit your psyche as hard as testicle pain. You spend your whole life protecting that area from pain and now your helpless and pretty much living the nightmare that every man fears.

On a positive note I believe most urologists don't want to remove your prostate because vast majority of sufferers eventually clear this condition or at least symptoms subside enough to live life again. Numbers I've found suggest 33% first year with 80% by 5 years and 95% by 10 years with severity of symptoms seeming to have no factor. In addition there are about 600,000 new cases of diagnosed chronic prostatitis every year meaning that 600k men were in enough pain to show up at a doctor's office for help with about 2 million unique patient visits per year. Suggests to me that majority of people get well and the ones that don't likely have other issues keeping them from recovering like urinary abnormalities and the odds of beating this are real good. Saw another study that suggested the natural evolution of this disease results in a decline of NIH symptom score by .19 every week meaning that on average somebody with a score of 22 will be symptom free in about 2 years and ideally symptoms subside enough half way through to not be a major impact to their life. This of course doesn't suggest the course of the symptoms as plenty of people's condition start mild and gets very severe followed by calming while others go through steady decline, episodes, or constant followed by a sudden period of abatement.

In short odds are definitely in our favor getting over this disease which leaves us focusing on coping with it until that day. I hope pain management helps you and gets you back down to a level where you can hope for that day.


Thu Jun 27, 2013 1:33 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I really am suffering......please help if you can.
Guys thank you for your responses.

I too am going to visit the chiropractor this month, I'm certainly going to try this route for relief. I also joined a very expensive gym which has a physio and health suite to participate in exercises and Pilates & yoga classes. So I'm not giving up yet! Not by a long way. I'm starting from next week daily swimming, 5 days a week , it helped before so damn it, I can't keep having self pitty, it's getting me nowhere fast and if I'm honest I daily fight the urge to give up. Its weird I go to sleep of a nite with the hope il feel better in the morning, but as I'm sure all you guys know....the pain and deep discomfort is still there just trying to beat you and break you down.

Thanks guys.


Thu Jun 27, 2013 4:39 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I really am suffering......please help if you can.
David,

I absolutely agree, I've found a chiropractor close by and I'm attending my initial appointment next week, looked up and searched the pudendal nerve issues you discribed. I am trying to stay focused and hold hope that it can help. Il follow up the appointment with a post here, and after each specialist appointment. Thanks mate


Thu Jun 27, 2013 4:44 pm
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
Good to hear it!

Part of the reason you are feeling so mentally weak is because I think your neck might be out of alignment. It would make anyone feel very drowsy, depressed and anxious.

Don't forget to get the deep tissue massage too. Chiropractic/Osteopathic adjustments only make a long term impact if the muscle knots are removed from your body too. Don't let any of them tell you otherwise.

Swim every other day and only front crawl. Not breast stroke, bad for the sacro-iliac joints.

Nothing wrong with feeling sorry for yourself from time to time. We've all done it. As long as you dust yourself off, grit your teeth and keep walking up hill you'll be fine.

You are now the Field Marshall of your own recovery. Make up your own mind. Don't trust ANYONE 100% because nobody knows this stuff 100%.

Buy the 'Visible Body App' on the iphone or ipad. Get the Chiro/Osteo to point out which muscles are tight. Figure out what they do. How did they get that way. Was it when you bumped your head...a childhood injury to your back, etc.


Thu Jun 27, 2013 5:57 pm
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
I wouldn't recommend Pilates at your stage. It focuses on tightening the pelvic floor which I imagine in you is already chronically tight.

You really need someone to start working out your deep muscle knots.


Thu Jun 27, 2013 6:01 pm
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
Also remember that health professionals are like builders. Only 1 in 20 is really any good.

If you don't get the answers you want or pick up that they are bluffing...move on.

They will all happily take your money for 6 months whilst you don't get better.


Thu Jun 27, 2013 6:04 pm
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Joined: Thu Jun 27, 2013 3:00 pm
Posts: 35
Post Re: I really am suffering......please help if you can.
Evilpog wrote:
Sorry to hear you are still fighting this with no relief. Does any pain medication help? I'm on Tramadol (should be safe for prostate and screw addiction risk), Meloxicam, and Amitriptyline which helps significantly knocking the constant pain down in my testicles, but unfortunately it doesn't get rid of it. I tried Cymbalta at one point, but didn't react well to it and don't know if it could have helped. My pain tends to be in the right testicle and I've found that sleeping on my left side help reduce the pain. I also wear Calvin Klein underwear that hold the testicles in a pouch out and forward which helps them from being jostled to much. I've found that walking and exercise, while painful, seem to dull the pain over the long-run as the nerves get use to the stimulation (I've thought about punching them to see if I could re-calibrate them into understanding what real pain is like - joke). I'll likely end up with a nerve block like you in the near future which is unfortunate, but glad the option exists for me. I'm working from home these days which I'm glad my company is supportive to a limited degree. It has helped out a lot with the stress allowing me to have a more flexible day working around the flares in pain and getting plenty of rest.

At this time my score is about a 22 and on pain killers I can get it down to 12 to 15 depending on the day. It's a crap deal when dealing with constant testicle pain. So far I've dealt with pretty much the full gambit of symptoms, other than urinary stream and ejaculation issues, you can have with this ailment and testicle pain is the worse. The golf ball feeling is second worse, but it doesn't hit your psyche as hard as testicle pain. You spend your whole life protecting that area from pain and now your helpless and pretty much living the nightmare that every man fears.

On a positive note I believe most urologists don't want to remove your prostate because vast majority of sufferers eventually clear this condition or at least symptoms subside enough to live life again. Numbers I've found suggest 33% first year with 80% by 5 years and 95% by 10 years with severity of symptoms seeming to have no factor. In addition there are about 600,000 new cases of diagnosed chronic prostatitis every year meaning that 600k men were in enough pain to show up at a doctor's office for help with about 2 million unique patient visits per year. Suggests to me that majority of people get well and the ones that don't likely have other issues keeping them from recovering like urinary abnormalities and the odds of beating this are real good. Saw another study that suggested the natural evolution of this disease results in a decline of NIH symptom score by .19 every week meaning that on average somebody with a score of 22 will be symptom free in about 2 years and ideally symptoms subside enough half way through to not be a major impact to their life. This of course doesn't suggest the course of the symptoms as plenty of people's condition start mild and gets very severe followed by calming while others go through steady decline, episodes, or constant followed by a sudden period of abatement.

In short odds are definitely in our favor getting over this disease which leaves us focusing on coping with it until that day. I hope pain management helps you and gets you back down to a level where you can hope for that day.


Mon Jul 01, 2013 4:18 pm
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Joined: Thu Dec 06, 2012 8:17 pm
Posts: 10
Post Re: I really am suffering......please help if you can.
Mate , sorry to hear you re not too good. I would echo what others have said and look to fix yourself if you like.

Why don't you pay a visit to Dr Charles Innes; he's very near you in Twickenham (google him) I've been seeing him for a while now and getting good results, after traditional medicine also failed me.
Good luck


Mon Jul 01, 2013 4:29 pm
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Joined: Thu Nov 29, 2012 1:46 pm
Posts: 345
Post Re: I really am suffering......please help if you can.
Hi Cosoworth60,

Im happy that your getting better, what as help you? as the doc identified your problem?

Carl


Tue Jul 02, 2013 11:20 am
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Joined: Sat Jul 06, 2013 4:23 pm
Posts: 3
Post Re: I really am suffering......please help if you can.
I am very late joining this thread. But I will posting a common theme for a traditional cure for bladder and prostrate problems on other threads.

I suffered the usual complaints of prostatitis. Urgency, burning on urination, hesitancy and poor flow. Together with an enlarged prostrate gland making it a daily chore of planning my days out knowing where every public toilet could be found. Put it this way, at the cinema I would visit the toilet at least 3 times during a one hour 40 minute film.

I came across a book called "Health Through God's Pharmacy". by Maria Treben. Especially of interest was the Small Flowered Willow Herb or Epilobium parviflorum. Check it out at: http://prostatitis.org/redirect.php?lin ... arviflorum

This herb is easily sourced and obtained by mail order.

A tea is made of the herb. ONE cupful is sipped on an empty stomach at breakfast, lunch and before bed.

Within 3 weeks, I was 'pissing like a racehorse'. I tested it by stopping the treatment. Within 3-4 weeks the symptoms began to return usually poor stream and hesitancy and failing to completely empty bladder. Within a week, of re-starting the treatment incurred an immediate relief. Its strange, its almost steathily, one minute you are waiting and straining and next you are urinating normally like you used to do as a young boy. At the expense of appearing a little crude. but its a joy to have a pee outdoors and see this huge curved stream ahead of you with no pain or effort.

It has a particular component in the plant known as Beta-Sitosterols which reduce the proliferation of cells within the prostrate AND there are claims that Prostrate Cancer has gone into remission.

It also has terrific benefits for the bladder.

Its effect is several times better than Saw Palmetto and of course far better than antibiotics, anti-inflammatories and alpha blockers.

There are loads of references about this marvellous common plant over the whole internet.

I hope it benefits you as it has me. You have nothing to lose by trying.


Sat Jul 06, 2013 5:10 pm
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Joined: Sat Dec 08, 2012 4:30 am
Posts: 830
Post Re: I really am suffering......please help if you can.
Jester, thanks for the information. Maybe somene will be helped by it.


Sat Jul 06, 2013 7:57 pm
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
Any update England?


Wed Jul 10, 2013 10:43 am
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Joined: Fri Mar 23, 2012 5:18 pm
Posts: 73
Post Re: I really am suffering......please help if you can.
Does anyone know if having a Visectomy can cause Prostatitis ??


Mon Jul 15, 2013 11:44 am
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Joined: Wed Jun 08, 2011 11:45 pm
Posts: 122
Post Re: I really am suffering......please help if you can.
parrotnotes wrote:
Does anyone know if having a Visectomy can cause Prostatitis ??


Read my posts ! There are three surgeries that I know many of men that have gotten prostatitis if they go bad. Visectomy ,hemorrhoids,hernia I have know several guys that have had these surgeries go bad and within 30 days the Hell begins !
Good Luck !
Peace And Light!


Mon Jul 15, 2013 5:14 pm
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Joined: Thu Feb 14, 2013 5:33 pm
Posts: 484
Post Re: I really am suffering......please help if you can.
Anything which causes pain in the pelvis can cause muscular tension and trigger prostatitis


Mon Jul 15, 2013 5:15 pm
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Joined: Thu Jun 27, 2013 3:00 pm
Posts: 35
Post Re: I really am suffering......please help if you can.
parrotnotes wrote:
Does anyone know if having a Visectomy can cause Prostatitis ??

Hello,
Google Chronic Orchialgia. Microdenervation of the spermatic cord and scrotal content pain. Chronic Orchialgia was text book me for 18 years. If I can help in anyway let me know.

O, as far as my user name, I always tell the wife I am all ways right, but she never listen? Guys, humor me please with my name. I like to hear: Dear Mr. All Ways Right :lol:

May God in Jesus name heal every one.


Mon Jul 15, 2013 7:56 pm
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Joined: Sat Dec 08, 2012 4:30 am
Posts: 830
Post Re: I really am suffering......please help if you can.
All ways right wrote:
parrotnotes wrote:
Does anyone know if having a Visectomy can cause Prostatitis ??

Hello,
O, as far as my user name, I always tell the wife I am all ways right, but she never listen? Guys, humor me please with my name. I like to hear: Dear Mr. All Ways Right :lol:


My wife must know your wife because she never listens either :D


Mon Jul 15, 2013 8:36 pm
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Joined: Tue Jul 17, 2012 2:25 pm
Posts: 5
Post Re: I really am suffering......please help if you can.
Hi good morning how are you today ? did you get a chance to look at that page ? I am on day 17 of the Yoga and the pain management dr is giving me acupuncture to try and ease this damn pain the yoga really sets it off. I could do with your advice hope to hear from you soon hope all is well X Hi I am in a very dark place and need some support, i am in the UK and like many others can't find any answers! I have really bad testicular pain , back and hip pain and really feel like ending it all . Please will someone respond very lonely and scared .
sailingwave@live.com

Nick


Fri Jul 19, 2013 6:19 am
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Joined: Thu Jun 27, 2013 3:00 pm
Posts: 35
Post Re: I really am suffering......please help if you can.
David88 wrote:
Anything which causes pain in the pelvis can cause muscular tension and trigger prostatitis



Hello David,

The reason I ask you to research on my last emai to you, I feel anyone can say yes to this or that. You have to read and research it for your self too. Never take any ones word for anything, even though ( I am all ways right) ha ha. I have had this problem for 18 years. I did have Microdenervation of the sprematic cord surgery on May 29, 2013 at 10:30. I am 80% and some days 90% pain free. Do you have an enlarge prostate? I had enlarge prostate. I had green light laser 10 years ago. If I listen to my doctor at that time I would still be on prostate meds. The second best thing I have ever done. They did a test to my spermatic cord to see if the problem is from that area. It tested 100%. I went for surgery. Well, I have to get back to work.

May God in Jesus name heal everyone on this blog.
Mr. All Ways Right


Fri Jul 19, 2013 1:29 pm
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Joined: Thu Jun 27, 2013 3:00 pm
Posts: 35
Post Re: I really am suffering......please help if you can.
sailingwave wrote:
Hi good morning how are you today ? did you get a chance to look at that page ? I am on day 17 of the Yoga and the pain management dr is giving me acupuncture to try and ease this damn pain the yoga really sets it off. I could do with your advice hope to hear from you soon hope all is well X Hi I am in a very dark place and need some support, i am in the UK and like many others can't find any answers! I have really bad testicular pain , back and hip pain and really feel like ending it all . Please will someone respond very lonely and scared .
sailingwave@live.com

Nick


Hello Nick

Please check my response to David 88 I just posted. I have tried acupuncture, did not work for me. I know how you feel. You are on my prayer list along with everyone else on this blog. Stay strong.

May God heal you,

Mr. All Ways Right


Fri Jul 19, 2013 1:37 pm
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