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 I really am suffering......please help if you can. 
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Joined: Fri Aug 12, 2011 4:20 pm
Posts: 45
Post Re: I realy am suffering......please help if you can.
have you considered ongoing prostate massage from a doctor or qualified therapist?


Thu Sep 20, 2012 3:03 pm
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Joined: Fri Apr 13, 2012 12:18 am
Posts: 11
Post Re: I really am suffering......please help if you can.
I had the same issue for a year. I was cured. Dr Chung cured me. He is in Vienna.VA . His number is 703-208-4200. Good luck brother


Tue Sep 25, 2012 8:10 pm
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I really am suffering......please help if you can.
England, I really hope you've been massaging outside and inside. After the first three months of doing this, the constant pain subsided. My doctor was a waste of time. Yours gave the same answer as mine did. Live with it and here's some pain meds. I had to kick a Vicodin addiction because of this.


Thu Sep 27, 2012 9:01 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 everyone,

Never - I've been having as much intercourse with my girlfriend as I can, trying to ejaculate as much as I can. But it provides me with little or no relief :(

What is the most bothersome is the intense and very nasty dull throbbing ache in my inner thighs. The pain is lateral down the inside of my thighs down to my knees on both sides, it's Truly the most horrid thing. Nothing at all relieves the symptoms. Can anyone / anyone at all relate to this symptom? Because the urologist ad GP do not account this to my prostate problem? It's very very worrying.

The urethral discharge still happens after bowel movements, and my legs throughout the day are extremely weak at times, especially walking down the stairs , they wobble and feel as though I have no strength in them anyone more....

Please - if anyone has these symptoms - please post as its now been so long since I felt well , it really is now beginning to take over my thoughts at every moment, struggling to come to terms with this.

I am having another discharge culture and urine culture this week.

Best wishes everyone


Sun Sep 30, 2012 6:43 pm
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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.
Hello England . Yes i had that horrible pain down my leggs and knees as well. Also had the kicked in the ass pain. Burning thighs and feet,But i didnt have discharge.
The only thing that has helped me is injections . You can see my other posts. Other than that i have no idea on how to get of it. Its a living hell!
Good Luck! Peace And Light!


Sun Sep 30, 2012 7:05 pm
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Joined: Tue Jun 19, 2012 12:32 am
Posts: 6
Post Re: I really am suffering......please help if you can.
Hey England, sorry to hear about your case. It'd be nice if there wasn't a need for this forum.

I don't have the symptoms to the extent you do, but I have some of them. I've found what helps with avoiding the pain in leg/thigh/groin is avoiding ejaculation, which I know runs counter to most of what people tell you. Try going a few days without one and see how it feels.

Also, avoiding any and all diuretics, caffeine, and generally weird chemicals helps. For me, that means not drinking cheap beer (liquor and wine is just fine, oddly enough) anything with caffeine, or protein shakes. I don't know why, but those things make me hurt down there. Keep your bowel movements healthy - avoid anything that causes diarrhea or constipation. Anti inflammatory medication helps (ibuprofen). If you want to see what in your diet might be ailing you, go on a diet of water, steamed veggies, fish/poultry, and slowly reintroduce things. That's how I found my problem foods/drinks.

Lately I've been wondering if what we suffer from is a form a nerve damage, that a neurologist might know about. It seems possible, as the peudal nerve is right between the rectum and prostate, and my leg/groin pain gets worse after a bowel movement or ejaculation.

Good luck, brother.


Sun Sep 30, 2012 9:26 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 again everyone,

Firstly thanks everyone for posting, I hope between us all we can find a cure or at least a way to relieve the horrible syptoms that this brings with it.

Yes the pain down the inside of my thighs is at times so damn painful, made worse by laying down and after ejaculating. My legs also burn and feel weak. It's awful, Truley is. If your experiencing this too - I know exactly how you feel.

I've asked for a MRI of my Lower back and legs, I too feel this could be a nerve issue. Given the fact that after repeated negative tests / cultures and bloods spanning 18mnths ....I'm goin to explore this route of investigation fully.

I have taken a further urine sample and semen and urethral discharge culture in for testing today, but the doctor says it will just be the same as the last results - all negative.

I'm interested in the injection method? Has anyone in the UK tried this with any success ?

Best wishes everyone


Mon Oct 01, 2012 6:44 pm
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Joined: Fri Aug 12, 2011 4:20 pm
Posts: 45
Post Re: I really am suffering......please help if you can.
hi england,

have you had mri and/or sonogram to determine
if there are blockages?

if so, and they are negative then you really should
consider direct injections of antibiotics into the prostate
and seminal vessels.

good luck


Tue Oct 02, 2012 11:43 am
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Joined: Tue Oct 02, 2012 11:11 am
Posts: 23
Post Re: I really am suffering......please help if you can.
Hello,
Only joined this site today and read your journey from beginning to end. I am so glad you have this site that is clearly giving you a sounding board. I am 44, chronic prostatitis and can fully sympathise with all your comments, I am a nurse and have had this for 7 years now!! on a positive note i have learned to cope, sites like this teach u lots of ways to cope!! I take me pain killers, drink lots, and so on lol!!! You do learn to adapt to this and life just goes on and some days are better than others, like many have said to you, this may just stop?? I have decided to search for answers as GPs etc dont have them, so doing lots of reading and research. It there anything that helps your symptoms ease???? Why I say that is when I am chilled, perhaps distracted by friends, having a beer, or intently working and concentrating, I don't notice my symptoms as much?? Is there anything that makes it better for you?? Good luck and I look forward to seeing you fit, well and happy!! Rob


Wed Oct 03, 2012 12:47 am
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I really am suffering......please help if you can.
I think you are over using your prostate. I went weeks without ejaculating to let it heal, then I ejaculated once a week. Slowly but surely the pain stopping hitting afterwards. Also the massaging was key in between ejaculating.


Wed Oct 03, 2012 7:28 pm
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Joined: Tue Oct 02, 2012 11:11 am
Posts: 23
Post Re: I really am suffering......please help if you can.
Hi Neverlookback,

Having chronic condition for 7 years I am now taking some time out to research this subject for myself and others. I was interested in your comment as
I tried massage yesterday following a warm bath based on what I have learned, it was instant relief. No pain killers yesterday, like a massive pressure being relieved, so agree with you that this i very effective, how often do u need to do this ??? and how old are you, I am 46. There is lots of differing opinions on the ejaculation subject it almost feels like it is the right thing to do to relieve pressure, but if you feel this helps not too, I will try it?? for a week or so??

I would value anyones opinions on the following ideas I have had. I have thought long and hard about what might be triggering this for me, one belief I have is it arrives at its worst just after a stressful event in my life. Stress seems to trigger it?? Stress and pain and worry increase the symptoms, anything that relaxes me makes symptoms ease. I am a registered nurse working in Intensive care, so not a person who suffers from stress as such, but have noticed the connection!!!

Another thought I have considered is my other half likes sex most days. I should not complain!! But very often my other half finishes first leaving me unrelieved. To be polite I just say don't worry and cuddle up. This in effect means 4 or more times a week I reach the point of no return and don't ejaculate. Could this be causing the problem??? Can anyone else relate to this or is this a coincidence??

I take beta blockers for blood pressure and tramadol 100mg three times a day, for a disk injury. Can anyone else relate to any long term medications that might be causing or antagonising the problem????

I am going to take your advice and massage and rest is on the cards. In just a few days on this site I really feel that this is a manageable nuisance that will get sorted!! Value any thoughts, ideas or suggestions?? Cheers Rob


Thu Oct 04, 2012 8:29 am
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I really am suffering......please help if you can.
I am 30 years old. The problem is after about a week of not ejaculating, a mans prostate swells up a hell of alot. This triggers alot of pain. I would strongly suggest you look into ways of releasing the semen without making the prostate contract vigorously. i.e. milking or vibration masturbation. Sex without ejaculation sounds painful. Articles Ive read suggest twice a week at most if you are suffering from prostate problems.

Alot of people on this forum think that taking some pill is gonna fix them. Physical therapy is necessary. I didnt have a simple case of prostate problems either. I was in hell, but took action asap. A year ago, I was in constant pain and I thought Id never get out. Massaging is the only way, I assure you and Im glad its showing you some relief. It will be better.


Thu Oct 04, 2012 7:07 pm
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Joined: Tue Oct 02, 2012 11:11 am
Posts: 23
Post Re: I really am suffering......please help if you can.
Thanks Never lookback!

I had a discussion with the other half about this and now always finnish during sex, to my surprise my other half enjoys that extra bit of attention?????

I have done the massage for 2 days now and I have a new lease of life, sleep better , no pain, pulling back on regular meds, and feelign pretty good, when doing that I do get a clear discharge. I do it following a bath and yes it works, feeling very positive about this. I am lucky to have a partner that understands and would willingly help with massage etc!!!! I am at this time 80% symptom free. Thankyou !!


Thu Oct 04, 2012 9:06 pm
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Joined: Tue Oct 02, 2012 11:11 am
Posts: 23
Post Re: I really am suffering......please help if you can.
Hi Again,

The routine of reaching orgasm and not ejaculating has gone on for a long time, the symptoms of CP have been coming very slowly, poor water stream, splitting, gradual pain, etc etc!!! It will be interesting to see what happens over the next few months, now having full sex and ejaculating, ??? will this resolve the problem for me??? I meant to say that antihistamines for what ever reasons do offer me some relief of the irritation I feel??? Thanks for your comments,
Good luck!! Rob


Thu Oct 04, 2012 9:11 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.
Been realy suffering past few days , inner legs very painful dull aching, left testicle and leg arm weakness. I just can't find anyway I can stop it. The one and only thing that helps even a little is a red hot bath.

Absolutely awfull it is. :(


Mon Oct 08, 2012 7:04 am
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Joined: Mon Oct 08, 2012 2:16 am
Posts: 3
Post Re: I really am suffering......please help if you can.
England,
I have been searching and searching for anyone with similar symptoms as mine. I could have almost started this post as you did. I have been diagnosed with prostatitis a few months ago but I have been dealing with it for over a year now. Red meatus, clear discharge with bowel movements and tingling burning from stomach to knees, especially inner thighs. I have taken doxycycline and coprocessor each for a month with very small improvements. I have tested negative on 6 UA's and one blood test for all std's I have been off of meds for months now so if I can get a culture I'm hoping something will show up so the appropriate antibiotic can be prescribed. I am certain we have the same thing. Please stay in contact as I am sure we can beat this.


Mon Oct 08, 2012 1:23 pm
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I really am suffering......please help if you can.
hows your ejaculation frequency? What is longest you've gone without ejaculating since this all started? I remember that pain like it was yesterday. I remember getting hot flashes at work when the pain flared up, I wanted to jump out the window.

Are you doing kegel exercises or anything that forces blood to the prostate region?


Tue Oct 09, 2012 11:08 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 everyone

So the urology reports reads like this :

All microbiology NORMAL
MRI initial - NORMAL
Ultrasound - NORMAL
Cystourethroscopy - NORMAL

DIAGNOSIS - Chronic Prostatis / Chronic pelvic pain syndrome
Reactive tendinitis (by over use of and related to long term Ciprofloxacin)

To finish courses of Amitriptyline and options next to under go psychological and indeed nerve block approches in managing the symptoms.....regular use of 400mg x3 daily of anti inflammatories. To see if this alleviates symptoms :(

Neverlookback - my ejaculation frequency does irritate and not help my symptoms your right there! I've no adopted ejaculating as less as possible but still trying to retain a healthy sex life - kegal excercises and prostatic massage are now next to try.

Your thoughts on the diagnosis would be appreciated thanks everyone


Wed Oct 10, 2012 12:17 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.
Flamin - I too thought a microbiology report would show the offending bacteria - but in every urine semen and discharge culture nothing was found.

This included my entire urethral passage being "scraped" out looking for hidden cells.
Nothing.....

Almost 4months Cipro have done damage too
Along with 3 seperate courses of doxycycline...

I'm kind of at a loss now, not sure where to turn other than searching for anwsers elsewhere.

Seems only relief wi come from prostatic massage and baths. Hear a lot about diet? But don't realy see how me having a steak or a salad will make my intense inner thigh pain and weakness disapear tbh.


Wed Oct 10, 2012 1:12 pm
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Joined: Thu Jun 14, 2012 3:38 pm
Posts: 50
Post Re: I really am suffering......please help if you can.
Sorry England,

I too was let down that everything was clear - relieved but frustrated.
In fact my Dr said, "well the good news is it won't kill you."
No comfort there.

That was also my report and diagnosis - CPPS!
For me the diagnosis opened the door with my Dr and urologist to accepting my symptoms and getting some relief with better pain medication and other prescriptions to deal with other symptoms.
At least my Dr doesn't think it's in my head and that I just need to calm down now.

In my case I have tried a variety of diet changes, nothing makes a difference.
I never ate much sugar, fat or other things. I love spices and 'hot' food.

Baths, exercise, heating pad, pain meds, ejaculating regularly, and life is livable (not pain free or symptom free but livable and managable).

Hang in
Carl


Wed Oct 10, 2012 6:08 pm
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Joined: Thu Oct 11, 2012 5:35 am
Posts: 21
Post Re: I really am suffering......please help if you can.
Hi,

I am new to the forum.

I have had the condition on and off for a number of years now but sometime ago I had the Manilla treatment in a trial in the UK. It was very successful for me and, whilst I still have some symptoms, mostly urgency I have not had any real pain since.

Symptoms come and go, but regular treatment keeps them under control. All the usual things, hot baths, massage, ejaculation (I have built up my pubic muscles with regular Kegels and squeeze very hard on ejaculation. Long walks are very effective too.

Ibruprofen works well - I take a larger dose but I am assured by my Dr that I am within safe limits.

One treatment that works well for me, when symptoms occassionally re-emerge is a TENS machine. I have to shave round the groin. Left on for long periods its a life saver. It enabled me to get back to work when things were bad.

Keep up hope england. Try all the treatments.

Perhaps the Manilla treatment might work for you?

Jack


Thu Oct 11, 2012 11:24 am
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Joined: Tue Oct 02, 2012 11:11 am
Posts: 23
Post Re: I really am suffering......please help if you can.
Hi All,

I dont know if the comments I am about to make are of any use to anyone, but if this helped me, my story may help others. I vould value your comments.

I checked the acidity of my urine on nights last week during a particularly horrid, painfull night. Acid was off the scale, I could not understand it, it did feel like I was peeing acid.

I drink tons of spring water all night at work and eat well, took my multivits, vit b, vitc, anti inflamatories etc etc

When I looked into it the following day, I realised the distilled water I am drinking has a high acidity, as does slow release vit c, so does the 5 pieces of fruit I eat daily to make me healthy. Also the diclofenac stimulates acid production in the gut raising ph or urine. I also was taking vit b, known to cause acid.

I decided 3 days ago that all my attempts to help this seem to be making it worse, so stopped taking the whole lot!!!!! Ph raised to a more alkaline level. Pain began to ease.

I bought a pack of over the counter long acting antacids, Ranitadine and started taking them morning and night.
The same day symptoms stopped, barring the odd stabbing pain in the groin. I have gone 3 days now, no pain, on movement or sitting. Stopped me baths and life has returned to normal. Even stopped using condoms during sex, I was always worried incase sex was irritating things. Also felt condoms agravated things too!!!

I don't know if this is a coincidence, but this all began 3 months ago, I have had a very stressfull 3 months, lost a friend to cancer, and the prostrate problem has compounded that stress. I don't know if this is just the natural end to this bout for me or whether the making the changes has made a vast difference. If it works for anyone else I would very happy. Its early days will keep you posted Cheers


Fri Oct 12, 2012 3:59 am
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Joined: Thu Oct 11, 2012 5:35 am
Posts: 21
Post Re: I really am suffering......please help if you can.
With regard to acids. When I first got this I was advised to up vitamin C and started to drink loads of orange juice. It really made things worse.

After my treatments no effect either way for me.

But yes it has impact.

Jack


Fri Oct 12, 2012 11:13 am
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Joined: Sun Jun 10, 2012 7:17 pm
Posts: 2
Post Re: I really am suffering......please help if you can.
What's up bro I'm sorry to hear this story. mine is a little different but look into pelvic floor muscle problems. they say 90 percent of prostatitus isnt infections but the pelvic floor muscles creating havoc on any of the functions in that area... anus,gi tract, testicles,prostate, low back, and alot of the time affecting the left side of the body more, sometimes hard to tell because pain radiates.

my situation brought on by stress, cannot separate mind from body. I found an awesome urologist named dr Hernandez in daly city ca. he told me this was going to test my patience and he was right. it's been about 5 months and things are a lot better but its like having a form of PTSD when you live with chronic pain this long you relate everything to it also learn from this and trust in God the pain may bring you salvation


Thu Oct 18, 2012 1:11 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 everyone

Have a question please if you read this let me know

Every day, from the moment I wake till I sleep, I experience terrible weakness in my legs / pain inner thighs and weakness in my arms - does anyone else have these symptoms. I also defecate two maybe three times daily.

Hope u guys are well all the best.
England


Thu Oct 18, 2012 11:44 am
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