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 I really am suffering......please help if you can. 
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post I really am suffering......please help if you can.
Hello everyone,

Ive read many posts from members here, and i can only sympathise with you all, Here is my story.....im suffering extremely badly..

I was a very healthy male 31yrs old, serving in the armed forces. I ate well, slept well and had absolutely no medical issues whatsoever.

Apr 2011 :
I had a sexual encounter with a female, used protection for intercourse but i did not when she gave me oral sex. 2 days after this "exposure" i developed a very nasty pain in my left testicle, my first though was perhaps id strained myself or perhaps bruised myself. So i dissmissed any type of infection, took pain killers and carried on. 1 week passed and the pain was that severe that i went to the medical facility to have myself checked over. I told them of this exposure, they gave me 10 x days of Doxycycline, a shot of Ropchin? in the buttock and 1 x Azthromicin dose...presuming that i had been infected with a STD. I also had a testicle ultrasound which revealed a mass on my epididmitus. I had all STD tests taken.

May 2011:
After the 8th day of taking Doxycycline i began to feel much better, and after the 10th day i felt as good as new. But.....i returned to the medical centre complaining of very sore inner thigh pain, like a dull throbbing ache. At times it was so bad i used ibuprofin cream but it did not work. I also developed muscle twitching in my legs, and general weakness and shaking (anxiety related? im not sure). The STD tests all came back negative, but i was well aware that certain STD's needed a longer period to incubate... The doctor there told me he had no idea why my legs hurt, i asked for more doxycycline, but he refused saying i had been given the "standard" dose. After that my testicle pain flared up again.

July 2011:
I began to develop a clear urethral discharge/penis tip pain and irritation/redness. My underwear each day was heavily stained in a yellow urine like colour, after every bowel movement i would discharge this sticky "cum/clear" looking gel. Excessive at times. I swifty returned to the doctors. They did no examination and placed me on 30 x 500mg Cipro. Diagnosing Chronic prostatis.

August 2011:
By now my symptoms have escalated, severe weakness/muscle tremors,arm rash, im finding walking upstairs and general tasks very difficult. Bruising and gastrological problems have presented and im realy not feeling very well whatsoever. I went for another set of STD tests.....all again returned negative (all STDS). The doctor now prescribes me 3 months of Cipro, and arranges an appointment with a Urologist and Neurologist.

Sept/Oct 2011:
I visit the Urologist who examines my prostate DRE, and a physical. He says my prostate feels fine, although he tells me to cease taking Cipro. He says all the bruising and tendon pain is cuased by Cipro. He then takes a urine sample for testing, and tells me that a little discharge on bowel movements is natural.... I could not stress to him enough all my symptoms and related epidimitus, but he just said "your prostate is fine" He did take a PSA blood test and told me not to worry, so i left feeling somewhat bemused and even worse.

Nov 2011:
I went for another set of STD testing.....at a private clinic, all results yet again negative. Still having all symptoms i listed above.
Returned to hospital with epidimitus cyst....they excised the mass.

Dec 2011:
Im starting to feel very low indeed, weakness/nausea/bruising/shaking urethral discharge on BM, frequent urination, penile discomfort and testicle ache/sharp pains. Went to the doctor who gave me Amytriplyne? he told me to take hot baths and drink plenty water.

Jan 2012:
The urologist i was seeing discharged me from his care, saying my prostate was fine. By an absolute chance of luck, my GP disagreed with the Urologist, and made me a new appointment with another consultant. I went and had Ultra sound, abdominal xray to look for kidney stones, but i did not have any. I also had a full body MRI, and bloods to determine the cause of my weakness, but this also came back inconclusive.

March 2012:
Yet again i had another full set of STD tests, although my GP told me it was not needed. All tests negative again.
I went to the new Urologist, and within 5minutes of being in her office, she diagnosed me with Chronic relapsing Prostatis. I showed her pictures of the discharge. She was confused and apoligised that my symptoms had gone on so long without being diagnosed properly. She told me my medical history was proof enough...performed another DRE and ordered a cytoscopy.

March/april/may 2012:
Symptoms worsing, i now have taken longterm sick leave, im struggling at times to walk, im socially isolated and feel completely low. I would be lying if i said i had no suicidal thoughts. Ive distanced myself from all family and friends.

Cytoscopy/Prosate massage procedure was performed under a general. I came around, and the urologist who performed the operation explained that she had found and removed a growth from my bladder. Nodes i believe she said, and also found a small growth on my prostate. She told me very briefly that these would be sent away for testing. She also said that Cipro could be causing all these bruises and weakness?

June 2012:
I have received my follow up appointment for next month, indicating if there was no improvement (which there has not) that she would repeat the prostate massage and take further biopsies.

Ok we have arrived at the present date, all symptoms persist. Im unrecognisable from the man i was, due to my wish to be alone, and the doctors not providing me with much insight into my symptoms, i dont know what to do, im taking no medication, and have not in some time. My family want to help, but if ceased all contact with them. Including my closest friends. Im considering another STD test, although ive had 5 spanning 11 mnths, is this conclusive??

If you have read this far, thank you. Any and i mean any help would be received with my upmost thanks.

England


Sun Jun 10, 2012 6:44 am
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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.
Check out this site: http://prostatitis.org/redirect.php?lin ... linic.com/

This man helped me

Good luck


Mon Jun 11, 2012 9:30 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Can anyone relate to my problems?

Thanks for the link mate il take a look.

It's worse for me after bowel movements. I'm constantly urinating after, and it "feels" like Im dribbling urine all the time. Inner thigh ache/burning legs, testicle pain. But I have no pain from my "prostate"

After intercourse I feel awful for an hour or so, but begin to feel much better there after... Then I feel terrible again.


Tue Jun 12, 2012 1:27 pm
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Joined: Sun Nov 28, 2010 12:52 pm
Posts: 147
Post Re: I realy am suffering......please help if you can.
Was chlamydia included in all the testing? Every time?


Wed Jun 13, 2012 7:38 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Hi thanks for replying,

Yes I've had swabbs and a urethral sweep. Tested 6 times for all std's now.
Herpes/HiV/gon/mycoplasma/tric/chymidia/hep b & c/ urea plasma/syphilis etc everything.

I'm at a loss...


Wed Jun 13, 2012 9:12 pm
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I realy am suffering......please help if you can.
Are you doing sitz baths? Routine prostate massage? How often are you ejaculating?

My urologist was useless. I guarantee its the prostate being physically damaged that is causing all your symptoms. Massage is the only cure. I've been in your shoes, i too distanced myself from friends and family and considered suicide. My first post was a rundown of my whole story and the steps i took to get rid of it.

I'm sure you can look it up, if not I can send you the link.


Wed Jun 13, 2012 11:41 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Hello Neverlookback,

Thanks for replying to the post.

Yes the single prostate massage I received while having the cytoscopy helped relieve the symptoms somewhat for about 2 days. As for sitz baths, ohh mate, Ive been having around 5-10 baths per week, it makes me feel so much better. I told my previous GP this and his response was " so having baths stops most of your syptoms? Well you must have anxiety! And the discharges you have are normal!" we'll I conveyed my anger at him saying that's ridiculous, he then laughed and told me he would be seeing me again soon for anxiety problems.....I got up and left.

The urologist I'm seeing now, she is so sympathetic and understandable. She diagnosed me within minutes. She said a discharge culture would be utterly fruitless, do to the sheer amounts of antibiotics I have taken....

13 weeks of Cipro
3 weeks of Doxycycline
1 x azthromycyn

I've now been told to stop having STD tests, I've spent a fortune on private testing to get the results quickly. My GP thinks I really must dismiss the possibility. But it's difficult, as these syptoms occurred after the above stated exposure. 6 FULL STD tests spanning 12mthns all negative.


Thu Jun 14, 2012 5:45 am
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I realy am suffering......please help if you can.
Stock up on quercitin, zinc and fish oil. Look up immediate prostate relief in google. There's a stretching method that helps alot and the site is so useful. I'm using my iPhone so it's hard for me to link it. Its in my first post to the forums. It's gonna require internal and external massage and plenty of time. You won't be like this forever if you just keep up with the routine. I swear to you, I am pain free for months now and when I was in that hole, I thought I would hurt for the rest of my miserable life. I cut the doctors out after wasting time and money.


Thu Jun 14, 2012 10:08 am
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Mate,

I'm so glad I found this forum, and for everyone's comments towards the thread.
Il be buying those supliments ASAP. I've been using saw pamellto? With vit d and b complex, but to no avail.

Is this a common symptom: when I strain or pass a bowel movent, I get this cleanish very sticky gel (semen like) discharge pouring out of my penis. Excessive at times.

A very red sore penis tip to on occasions.


Thu Jun 14, 2012 12:45 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Update;

I'm not sure who is following/viewing this post but for the benefit of others, and until the moderator decides, I will continually post my updates..

Went to my new GP today, she went through my previous history and was more than sympathetic towards my "condition" . She whole heartedly agreed with the diganosis of chronic reccuring prostatis from the urologist (also a woman I my add) . She asked if I had any marked improvement, to which my answer was no. My legs were burning and shaking, discharge at my penis tip had "sealed over my urethra" , my inner thigh pain persists and arm weakness too. New bruises which have appeared I also showed her, and old photos of bruises also. She was unclear as to the cause, and would not speculate on a possible cause...but ciprofloxin was mentioned.

She ordered full blood count/liver function/kidney/autoimmune
And Vit D deficiency tests....I will have the results for these next week. Vit D testing, was my idea, she actually praised me and said great suggestion.

I was prescribed paracetamol and Butans 5's slow release morphin based patches.


Fri Jun 15, 2012 9:13 am
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I realy am suffering......please help if you can.
Hey England, just curious how your ordeal is going?


Thu Jul 05, 2012 12:30 am
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Hey mate,

Was diagnosed with Vit D deficiency with a low count of 43. The GP said this could well account for the weakness
And muscle twitches. So placed on 3months of replacement tablets now.

Re visited the urologist who diagnosed chronic recurring prostatis, which she said may never be cured. As its tough to
Treat. She gave me a prescription of Alpha blockers, told me to ejaculate more often, drink plenty of fluids and take rest.

Still suffering badly I am, which has no doubt not been helped by it taking over a year to diagnose.

Testicle ache/weakness/penile pain and discomfort/discharge on bowel movements.......I told her that this is truly such a horrible condition, worst I've ever been. She shared her thoughts, told me to learn to live with it and that il probably always have some symptoms.

I asked for more semen cultures and she said its pointless 16weeks of cipro/doxy/athyz/ would have killed anything. And as every single std from week two up untill 12mnts was negative she would never find the cause.

This is where I'm at now mate ....


Thu Jul 12, 2012 5:13 am
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Joined: Fri Aug 12, 2011 4:20 pm
Posts: 45
Post Re: I realy am suffering. http://www.prostatitisclinic.com
hi england,

did you ever review the website that I suggested ??
http://prostatitis.org/redirect.php?lin ... linic.com/

Dr Toth has helped me.

good luck..


Thu Jul 12, 2012 12:29 pm
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Joined: Fri Jul 13, 2012 2:15 pm
Posts: 14
Post Re: I realy am suffering......please help if you can.
A possible cause of your symptoms is an infection in the seminal vesicles, which usually causes pain similar to that in prostatitis, but also creates the distinct pain in the legs/inner thights and also sometimes radiates down to the feet.

This could also explain why the doctors claim your prostate is fine. Even thought the prostate and seminal vesicles usually are infected together, this is not always the case.

What goes for bacteria, chlamydia could be transmitted orally and once in the prostate/seminal vesicles, it could be extremly hard to find. It seems that many severe cases of prostatitis that almost do not respond at all to antibiotics, in fact are chlamydia infections in strong biofilm or passive, intracelluar phases.

Try this: palpate your own prostate and see wheter it hurts or not. If yes, your prostate is infected aswell. If no - continue up towards the seminal vesicles. They are a bit further up/behind the prostate, so you might need a device to reach them. If they are not infected, you will not be able to feel them at all. If infected, you will feel pain in that area aswell, radiating to many spots below your waist.

The most effective therapy is probably the injection protocols in such severe cases. Just don't lose hope and think a cure isn't possible. I've read an almost identical story to yours on the Swedish site, and he recovered 100% after injection therapy.


Fri Jul 13, 2012 6:43 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Thanks so much for the information that people have provided me.

As for the std testing, my urologist did perform a urethral sweep ( dragging cells down from deep up penis) and testing. Which also proved all negative. Would this discount all std's now ...... Three urologist have all said nothing sinister is there?

Feeling quite rough today, damn inner thighs burning and aching very much, penis slightly stinging etc

Vit D supplements yet to have any effect of alpha blockers......


Tue Jul 17, 2012 11:18 am
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Joined: Tue Jul 17, 2012 2:25 pm
Posts: 5
Post Re: I realy am suffering......please help if you can.
Hi Everyone
I am new here and just started having these problems a week ago:(I have not been fully diagnosed but i am 46 and my GP thinks it unlikely to be cancer but likely to be Prostatitis. I am really going nuts over this I can't stop peeing, and the sensation is something that I have never experienced before., I am so scared and very depressed. How are you supposed to live with this? it takes me 5 mins to go every which is 40 times a day! time surly there must be some hope.

I have just started a new life and am really looking after myself and I have been through hell to get this far and just as things start to look good I get this problem, I cants stop crying and I feel like my like if over, I have virtually no friends or family and was looking for some sort of an answer.
I thank any one that has time for me.


Wed Jul 18, 2012 8:30 am
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Joined: Thu Jun 14, 2012 3:38 pm
Posts: 50
Post Re: I realy am suffering......please help if you can.
Hi Sailingwave,

hang on - I understand being very scared and depressed.
When it comes on like you say, it takes over your life and colours everything.
It is manageable and liveable if you can get an accurate diagnosis.
And its incredibly frustrating and an extra burden if your GP is not supportive or does not take your concerns (mental and physical) seriously.

What kinds of interventions or treatments have you tried? Antibiotics? NSAID's? Cranberry Juice?
What tests have you had? You say not fully diagnosed - what has been ruled out and by whom?

I felt as you feel now (I'm 45) when my cpps started to drag on and on ... now almost 20 months into this latest episode,
my life is management and good most days. Some days suck and some are awful but if you can get a support GP, urologist,
find some treatments that work for you - then it will hopefully settle and you learn to live with it (if it continues).
Still trying new things but what I'm doing/trying and taking right now makes life OK if the cpps keeps up.

As someone on a another prostatitis board wrote to me ... you have to make a choice to not let it win.
That's sounds impossible when you're going to the bathroom 40 times a day and it takes forever to go,
but make a choice you can. Take a look at my post on "Success Story" thread.

Its a difficult condition to live with and it takes a lot of time and effort to figure out what works for you.
There are so many variables for people ... some cant have sex because it makes things worse.
Some have sex and it helps with symptoms. Some cant drink wine, and some like myself can and it helps with not going to bathroom 4 or 5 times a night.
Hang in and hang on.

Let us know what happening.
Carl


Wed Jul 18, 2012 2:32 pm
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Joined: Sun Nov 28, 2010 12:52 pm
Posts: 147
Post Re: I realy am suffering......please help if you can.
Sailingwave,
Everyone can relate and sympathize with your bad experience.

There is life after prostatitis. You are getting too depressed too soon. You need more tests to better diagnose your condition. You should be able to find out more about your condition than you expressed here.

Become a student and explore for answers. Have you had a cystoscopy? Cultures, flow tests?
Xrays?


Wed Jul 18, 2012 7:39 pm
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Joined: Tue Jul 17, 2012 2:25 pm
Posts: 5
Post Re: I realy am suffering......please help if you can.
Hi and thanks for your words, I am fairly intelligent and it has not taken me to long to see where this may well end up! I am writing a response but its taking time, and I am in pain when sitting.
Again thanks very much.


Wed Jul 18, 2012 11:09 pm
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Joined: Tue Jul 17, 2012 2:25 pm
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Post Re: I realy am suffering......please help if you can.
Hi cadoresg & balblf33
I thank you for your reply it has had a great calming effect to know that I am not alone and it has made me realize just what it is to suffer. I have never felt so low and alone in all my life, again Thanks.

So far I have only been tested for infections in my urine they all came back negative! I have not been properly diagnosed as my GP seems to think its pointless for me to have a cancer test, I do understand why (I am 46 years old) and it would seem that the results can be inconclusive!

My GP has prescribed me Ciprofloxacine 500mg antibiotic to be taken twice daily and Detrusitol which relaxes the bladder . I can't think I can't seem to focus on anything and it would seem that no one cares.

Things I feel I should mention:

I am a sailor that took a wrong turn and ended up on opiates which really had a negative impact on my life I feel I should mention this as it may be of significant value .After struggling with this addition for many years I have fought my way clean, part of this process involves a drug called "subutex" this drug is administered to people withdrawing from opiate addictions, after doing some research it would seem that this drug may cause an enlarge prostate! http://prostatitis.org/redirect.php?lin ... 5&eid=1606

I Notice that people talk about muscle problems coursing this:

My life was just coming back and I have been busy building an internet business using SEO skills that I have learned along the way. I have spent the last four months working on a computer strategising and playing an online game of chess with Google ( SEO )which really hurt my back (sitting in a chair for long hrs), could this play a part ?

I am just about to reap the benefits of my hard work and this happens , I can't focus and its interfering with my new business. I truly understand the word misery, this really is a debilitating and scary condition and I am very confused (to many variables).

Not only am I peeing 40 times a day but there would seem to be no diagnosis and no cure? Is the only way to deal with this using the net and interacting with one another ?
Also I should mention I am a diabetic and I was diagnosed 10 years ago. Also I have been on the medication for 5 days and there are no significant changes in my condition. I feel very anxious and realised that you guys mentioned there is relief to be found but bear in mind I am new to this. Has anyone actually managed to find relief from this and live a normal life?

Again thanks for your time and apologies for the long drown out story.


Thu Jul 19, 2012 6:45 pm
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Joined: Thu Jun 14, 2012 3:38 pm
Posts: 50
Post Re: I realy am suffering......please help if you can.
Hi Sailingwave,

congratulations on getting yourself off the addiction track - that takes great courage, perseverance and strength.
I am glad you're feeling a little better, and hopefully with time and treatment the suffering will lessen or end.

You say your GP says its pointless to check for cancer - I would say at this time, nothing should be ruled out without investigation.
Have you seen a Urologist? Have you asked for a referral to one? My GP is good but the urologist I saw was excellent, knowledgeable and understanding.

You say your on Detrusitol and you can't focus - I am only speaking for myself - my GP tried that drug and another - I had blinding headaches from it.
In the end after two weeks, I had to quit because I couldn't work or focus. Is this focus issue just since starting it?
Has your GP considered Tamsulozin or Terasozin or one of the other alpha blockers - they also help relax the prostate and bladder, deal with BPH?
This is where a urologist is much better.

As for sitting - yes, long periods of sitting are a killer for prostatitis.
I regularly have to make long drives (4 hours) - pain and discomfort big time.
By the time, I am finished I usually have to have a hot soak in the tub just to relax because I been holding myself, moving (more like squirming), etc to keep the pain at bay.

You ask about living a 'normal life' - my life is manageable now ... not the old normal but a new normal is not depressing or overwhelming (but still not symptom free or pain free).
I am learning to live with cpps. For me, with the meds, it took 9+ months to get things 'stabilized' ... or at reasonable.
Again, if you can work with your DR and specialist to find what will help you, there is every reason to hope that in testing things out and time,
you'll get relief (either partial or complete).

Good luck with your business.
Carl


Fri Jul 20, 2012 7:24 am
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Joined: Wed Jun 08, 2011 11:45 pm
Posts: 122
Post Re: I realy am suffering......please help if you can.
Hello Carl thanks for sharing. what meds are you currently taking. im 90% better trying like crazy to get to 100% . thank you! Peace and Light!


Fri Jul 20, 2012 11:29 am
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Joined: Tue Aug 30, 2011 12:24 am
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Post Re: I realy am suffering......please help if you can.
England, the burning and pain in thighs doesn' seem normal with prostatitis. Have you had any accidents or bike riding accidents? If your spine is out of alignment, it could cause some of these problems. I would consider trying a chiropractor to see if that could help with the pain in your thighs etc. That usually is associated with a pinched nerve. Also try stretching the muscles and massage. I spread my legs out as far as they go, while laying down to stretch the inner thighs. Sitting you can put your feet together sole to sole with knees bent. Put pressure on your knees to stretch more. Only push as hard as you can stand pain.

The exercise and chiropractor helped when I had that kind of pain.

For sitting I use a soft cushion with a hole in it used for a fractured pelvis. Don't get the donut ring since it is too firm for the pain. I used it on chairs, the couch and in the car. I found it at a pharmacy that carries medical supplies. Hot baths that are super hot, help me but I have to do at least 1 in morning & 1 in evening.

Increasing frequency of ejaculation also helped. I masturbate or have sex at least 2 times per day. It helps to get prostate fluid out.

Sailingwave try vesicare, it helps with urination frequency problem.

Cranberry juice made my burning worse. I use saw pawmetto daily, an anti-inflammatory indocin 75 mg sustained release 2x's a day which helps, prosed for burning (much better than cheaper pyridium.

Be careful with all the antibiotic use. If you don't have an infection, by testing your urine, don't use antibiotics. I was on them for long periods and it caused a problem called c-diff, an infection in the intestines which causes severe diarrhea for long periods. I have been hospitalized 3 times for this. It's aweful, so be careful, don't just take them since they say you have prostatitis, they didn't improve my situation unless I had a urinary tract infection.

Prosed helped the most for the burning.

Good luck everyone


Tue Sep 04, 2012 7:09 pm
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Joined: Sat May 26, 2012 11:38 am
Posts: 109
Post Re: I realy am suffering......please help if you can.
I would strongly advise NOT ejaculating twice a day. Once a week for a few months. Daily exterior massage with a stronger vibrating massager would be safer.


Tue Sep 04, 2012 9:15 pm
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Joined: Sat Jun 09, 2012 2:06 pm
Posts: 94
Location: England
Post Re: I realy am suffering......please help if you can.
Hello again everyone,

I thought best to update on whats happened since my last post.

I recently returned from seeing my urologist, who has placed me indefinitely on a course of Alpha blockers & Amitriptylne. She has said that after many semen cultures and examinations she can only conclude that this is CP and that time will be the only healer. With regular ejaculation and possibly regular prostate massages, she feels from a "urology" point of view she can no longer help me, and that the pain in my testicle and deep inner thighs is "manifested" from hypersensitivity. Sadly i couldnt agree with her, and left the hospital very dismayed that no one can help.....

On a different note a particular white blood cell count on my full blood test (Enosphils) has been significantly high and persistent since my symptoms began, my GP called me into her office and went over my history very thoroughly. she has also stated that my Vit D levels are very low, and have been for some time now. She said that she will be researching into this, as it could possibly lead to some developments. Has anyone else experienced this? Any ideas?

18mnths has now passed since my intial epidimitus and to this day i feel no better, somedays are sometimes unbearable, its not a nice position to be in, when experts say they cannot help.

All the very best wishes everyone


Thu Sep 20, 2012 8:45 am
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