— chronic prostatitis/CPPS is a world-wide problem —
Observera att cirka 100 svenska fallbeskrivningar är samlade på undersidan Min sjukdomsberättelse.
Nedanstående sammanställning av 103 fallbeskrivningar på engelska som rör kronisk prostatit, har varit publicerade på olika internationella diskussionsgrupper. Jag anser att denna sammanställning är betydelsefull, eftersom de ger en allsidig beskrivning av sjukdomen och visar att den är ett stort problem över hela världen.
even dangerous in their ignorance of this disease".
Inlägg 50 påpekar att många av oss har flera olika symtom (som vi oftast inte möts av någon förståelse för) och det
stora behovet av "multi disciplinary medical team".
då man behandlat kronisk prostatit och gjort att patienten har fått ännu större problem.
Inlägg 25 anser att operationsmetoden TURP inte har inneburit någon förbättring.
Inlägg 26 anser att direktinjektion av antibiotika i prostatan har inneburit en förbättring.
Inlägg 39 anser att många drabbade har en eländig tillvaro i det tysta.
Inlägg 52 beskriver hur han får flytningar från penis vid tarmtömning.
Inlägg 53 pekar på samband mellan kronisk bakteriell prostatit och en reumatisk sjukdom som heter reaktiv artrit.
Inlägg 54 pekar på hur sjukdomen kan ha en stor inverkan på det sociala livet.
Inlägg 56 anser att prostatit är en "wastebasket diagnosis".
Inlägg 57 visar svårigheten att skilja på om symtomen är orsakade av interstitiell cystit eller prostatit.
Inlägg 59 pekar på att prostataektomi (bortoperation av prostatan) inte hjälpt mot hans besvär.
Inlägg 60 berör blod i sädesvätskan.
Inlägg 61 pekar bl.a. på att prostatit kan vara en del av en inflammatorisk sjukdom som drabbar hela bäckenområdet.
Inlägg 62 visar hur en cysta (sjukligt hålrum) i prostatan kan ge svåra besvär.
Inlägg 63 visar hur sjukdomen kan komma tillbaka (relaps) efter att man haft en period utan större besvär.
Inlägg 65 visar hur sjukdomen kan ge en allmänpåverkan av hälsotillståndet.
Inlägg 66 visar hur sjukdomen kan "ta över" hela den drabbades liv.
Inlägg 67 visar på den totala bristen på förståelse från arbetsgivaren och hur han hotas p.g.a. sin sjukdom.
Inlägg 70 visar hur sjukdomen bl.a. kan ge illamående och att den drabbade är totalt oförmögen att arbeta.
Inlägg 72 pekar på att en undersökning med cystoskopi kan orsaka bestående problem.
Inlägg 73 påpekar (som många drabbade upplever) att man kan få ökande besvär efter orgasm.
Inlägg 74 pekar på den dåliga prognosen för att tillfriska med hänsyn till de nuvarande bristfälliga kunskaperna om
Inlägg 75 visar de oerhörda konsekvenser sjukdomen medför då den drabbade är i tonåren.
Inlägg 76 berör stenbildning/förkalkning i prostatan.
Inlägg 80 berör hur sjukdomen kan påverka sexuallivet.
Inlägg 82 pekar på ett samband mellan urinvägsinfektion och kronisk prostatit.
Inlägg 90 anser att antibiotika inte varit till någon hjälp.
Inlägg 97 beskriver hur kvinnor kan drabbas av prostatitliknande symtom i de s.k. paraurethral glands/Skene's glands, som är kvinnans "motsvarighet" till mannens prostata. Se Allmänt om prostatan (prostatakörteln).
Inlägg 101 pekar på ett samband mellan Chlamydia Trachomatis och kronisk prostatit
Inlägg 102 pekar på ett ev. samband med en candida infektion.
Cases in English
1. My husband has had prostatitis for 15 years. As the wife of somebody that has had this awful problem I can only say that I wouldn't wish it on my worst enemy. My husband is in constant pain 365 days of the year without any let up of the pain at all. He has tried just about every known drug in the U.K. He has even as a last desperate measure had surgery called TURP, which we have since learned he should never have had, he has also had microwaving which I must admit worked for 6 days then back to normal pain etc. We are based in England and we have just about tried everything that is available in the UK.
He has recently come back from seeing the same Dr that he saw 15 years ago who thought the pain was all in head at the time, but know he has suggested that my husband be the 1st guinea pig in the U.K. to try the Thalidomide drug. Apparently it is being used for Prostate Cancer sufferers with quite good results and they are now trying to clutch at straws in the hope that he will get some sort of relief. So if there is anyone out there kind enough to read this e mail please could you come up with some suggestions that I might try on my husband before he goes back to the hospital and try this awful drug Thalidomide. Also if there is anyone who know of this drug being tried on anyone else and what the results are if there is any.
2. Hi, I too can sympathize with you and your husband. My husband xxxx has been suffering from this horrible illness for over 2 years. Right now he is in Arizona for prostate massages and antibiotics. He feels terrible and is not having much relief. He has been there for going on 3 weeks. He is very depressed and his pain meds are not helping him at all.
Does your husband take pain meds? Paul needs them but he is at the point where I think they are not working. But he is addicted (dependent) on them. I am going back to Arizona with our 3 children to spend the last week of his treatment with him. I am also learning how to do massages too. This has been very hard on our family, BUT EXTREMELY HARD on xxxx too. He has been suffering night and day. And has been to many different kinds of doctors who have not given him much hope. Does your husband have much pain? Does certain foods cause him any pain? I have not heard of this med THALIDOMIDE? Well good luck and God bless you and your family.
3. Has anyone got a good urologist to recommend in London? My husband's been suffering from prostatitis for nearly a year now and has been in constant pain. He's been on different antibiotics without success. His last culture showed no bacteria, but his pain has not changed. In addition to treatment with antibiotics, he's also followed some nutrition advice, and has been avoiding sugar, yeast, wheat and dairy products. In all this, he's had very poor support from his urologist and would like to find a more sympathetic and competent one.
a lot in advance.
4. My husband has thick grainy semen, slightly yellowish semen and enlarged Prostate. He went to a good Uro in L.A. and had his secretions cultured and nothing grew. The doc put him on some very strong antibiotic for a week just in case. No change. I do know that we both had Yeast infections at or around the same period that this started to become a problem. I guess if it was Yeast, this would have grown in the culture....yes? If he were to try an anti-fungal what would you recommend? We live in Asia and can buy over the counter if we wish.
Thanks, xxxx email@example.com
5. Last year I had my 50th birthday. That's when everything began.
In August of last year I had my yearly physical and PSA test. My physical was fine, my PSA was 10. My doctor scheduled an appointment with a Urologist. My second PSA was 5, but the Urologist recommended a biopsy in October to be safe. It came back negative. My next PSA was 2. Afterwards, I was put on a monthly testosterone shot for my low hormone level. My Urologist also gave me a prescription for Viagra.
March of this year I started getting a very uncomfortable felling in the prostate area. A trip to the emergency room revealed Protatitis. I spent the next 5 days in the hospital on 24 hour antibiotics. After my release, I was on Cipro for 30 days.
My follow-up PSA test in June was 5. My Urologist put me on Cipro for 14 days. The next PSA was 2. I would like to know if there is any correlation between the biopsy and Protatitis. The doctors during my hospital stay say no. My Urologist says no. How does on get Prostatitis??
In April of this year I started taking Saw Palmetto, Flax Oil, B50 and Bromelain. They were all recommended by my vitamin salesperson. I had my physical this month and my PSA is 2. I also told my doctor about the minor stomach discomfort I have been having for a few months. He said let's wait and see if it continues. Could this be from the Saw Palmetto??? I would appreciate all insight that anyone can give on this.
6. Hi. I've been logging into this website for over a year now hoping my symptoms would vanish! They're not and now I'm growing desperate. I work as a xxxxxxxxxx and the condition is starting to affect my job and my relationships. My wife has been very understanding, but after a year of pain it's really starting to get to her as well.
I'm 35 years old. I had a one-month bought of prostatitis, which was cleared up with antibiotics 7 or 8 years ago. It came back about a year ago. Intense pain between the rectum and scrotum is the main symptom. The pain is constant 24 hours a day. I was put on cipro for 2 weeks. The pain went away and I thought I was cured. A few days later the pain returned and it hasn't left in over a year. I tried several different ab's, muscle relaxes, anti-fungal, anti-depressants (which I only took for one day after experiencing an immediate increase in symptoms). I went to an oriental acupuncturist who gave me herbal remedies and treatments. I felt a little better but after 5 months it just wouldn't go away. Now I'm going to a nutritionist/chiropractor. Tests showed my Candida levels were in the red and the pro-biotics in my intestinal tract didn't even show up on the test. I've been following a strict no yeast no sugar diet and have lost 15 pounds that I really didn't need to loose. Now I feel even worse than before. To make matters worse I had knee surgery last week and was on heavy painkillers. Now my symptoms are worse than ever and I'm really at my wits end.
I was hoping some of you could share your experiences if you have found any relief techniques. I know stress is a major factor and I'm in a very high stress profession. Can anyone out there offer any suggestions? Sorry I wrote such a long not I just wanted to introduce myself to everyone. Thanks for listening
7. Xxxx, you're not alone. I've tried everything too and the symptoms just won't go away. I'm in a high stress occupation (Police Officer) also and I believe stress doesn't make my case any better. But there is definitely something else going on down there that is not being eradicated. I believe my problem is bacterial and it's just a matter of time before I find the proper technique/treatment that will clear this up or at least lessen my symptoms. Honestly, I'm scared. Lately I haven't been getting any better, my job is becoming more difficult to do properly (kind of hard to patrol the streets when you have to stop for a pee every 20 minutes) and I've lost my zest for life. Quality 0 %. Just must keep plugging along like the rest of the guys on this site. Take Care.
8. Yes, I too have found that the slightest fluctuation in temperature has an immediate influence on my sense of discomfort. For instance, the weather where I am has been quite warm for the last 10 days or so, and, in that time, I barely noticed any symptoms. Two nights ago, I was outside on a chilly night, and I detected a return of pelvic discomfort within a couple of minutes.
9. I have suffered from prostatitis for three years now. I suffer horrendous pain in the penile area, the perineum and rectum. The pain flares up bad if I try to sit down or have sex. The pain is so severe that I have been hospitalized four times for two weeks a time, and have been rushed to hospital dozens of times for pain and retention. The last visit I had to be catheterized as I was in total retention. The illness has totally debilitated me as you can hardly live a normal life if you can’t sit down and are in constant horrible pain, always have flu like symptoms, sore throat and sleepless nights. I have also more recently been diagnosed with chronic fatigue syndrome thought to be caused by the pain/prostatitis. I have tried many opiate painkillers most of which have little affect any more. Many nights I have to take the pain and consequently do not sleep. I have tried many antibiotics over a course of a year and anti inflammatories all to no avail. I have even tried two courses of the microwave treatment (TUMT), the last of which has put me in constant pain. I have also tried the product "Cernilton" and natural Rye, but this has not helped. Can anyone please offer any advice and other treatments/painkillers to try?
10. I have been diagnosed with Prostatitis. I think it's non-bacterial as there were no traces of infection in the inspection of urine and prostatic fluid. I have the usual symptoms. I am 20 years old, never had sex. My urologist says that there is little he can do. I refuse to give up. Anybody and everybody, please help me out. I am willing to try any form of treatment. I want my life back. Please help me!
11. How can you guys live with this pain for years? I am really thinking of removing my prostate gland. But I'm not sure if the pain will really go away or it will be worth it. For a while I was just having pain late in the day and would only take hydrocone pill or two and I would be all set. Just this past week I have been in pain on and off all day. And waking up at night again. I have been to doctors and doctors. Any ideas? Just last week my uro did a prostate massage (it killed). I'm wondering if this could of caused the pain to start up again. I see him in two weeks to have another one. Someone thought maybe need a massage even sooner? I'm taking Levaquin, Hytrin, Famvir, hydrocodone pills and lots of vitamins.
Once again thanks for any help.
12. I'm still amazed that such a devastating disease like prostatitis had (has) been ignored for so many years. I mean I read, I went to college, read newspapers, magazines, and men’s magazines, watch TV news. Where has this disease been hiding? (In urologist's offices') The only ones who really realize the devastating effects are those who suffer from CP. Doctors who say "live with it" simply cannot have any idea of how this disease kills your quality of life.
13. Hi, I've had this condition for almost 5 years, since I was 19. First there was "burning" sensation while urinating, doctors diagnosed it as chlamydia (while no clinical evidence of chlamydia was found) and prescribed me antibiotics. These helped in the beginning, but did not solve the problem completely. The symptoms re-occurred for two years and then almost three years I was almost symptom-free, but now they have come back again. I was originally diagnosed with IC (when I was 20 years old) but later with CP.
- Painful prostate, like sitting on a tennis ball
- Burning sensation in the bladder
14. I’m looking for doc or clinic in the area of Barcelona (Spain) where CP can be treated with some possibilities of success. If not in Barcelona but in Spain or Europe that’s will be also interesting. Any information about will be great. I’m suffering CP from 2 years ago. All the treatments have failed. Don’t know really what to do. I’m planning to do a trip to Manila or maybe to Tuscon. Do you think that will work? Is a lot of time and money? Thank you for your help. Any information will be welcomed. Excuse my English is not the best. Good luck for all!
15. I'm a 29-year-old male who has been suffering for 2 1/2 years and have seen 10 uro's with no help! I am at the end of my rope with this thing! I was encouraged with your email, I was wondering if you've heard of the Tucson AZ centre and if you know of anyone getting helped? I've tried a majority of the herbs and supplements you mentioned but the only thing that has seemed to give any relief is Amytriptaline. Please email back!
16. Hey: You sound as bad as me. I have never tried naproxen but I have tried every antibiotics out there! Been to Manila, Los Angeles, NC, SC, Baltimore, New York Philadelphia; GA and NJ. Of course pain is not my only problem. This affects me sexually. My drive is dead and function ruined and I used to be a marathon man. I am only 34. I now hate every day! A cure has to come soon cause. I can't hold on much longer. Don’t tell me you have no problem.
17. Please offer your pain management strategies. Personally I found only narcotic analgesics effective. Over-the-counter pain relievers don't do it for me.
At first, I had irritation and slight burning at the opening of the urethra. Over a period of about 10 days, I felt the burning advance deep inside the penis. Then the bug reached the prostate, causing agonizing pain for 2 weeks. The pain isn't so sharp any more but it's constant, getting worse at times. I have a clear discharge every morning (which I didn't use to have). Urinary frequency/urgency is normal. I am 24 years old and in pain all the time. My urologist performed prostatic massage 3 times. No effect except for the discomfort.
Just wondering if there is someone out there who actually eradicated prostatitis. I developed urethritis/prostatitis 3 months ago after unprotected heterosexual contact. Cipro, doxycyclin, flagyl, zithromax, anti-inflammatories - all have zero effect. Urologist still can't find a thing (10 visits). Still seriously thinking about suicide. I've had CP for 3 months now. Don't know how much longer I can take the pain.
18. Don't know why I got pain, burning, itching feeling within my urethra and testicle 24 hour a day. I am suffering from this since Mar 1999 after I have sex with prostitute but I have wear condom when making love. I have performed test on my urine, semen and results is negative for gonococcus, negative for chlamydia trachomatis, negative for AIDS, negative for Syphilis, negative for herpes type II.
Actually what's wrong with me? But I do get the symptom, which make me sick every day and my doctor ask me to see a psychological doctor. OR is it just the punishment of GOD because I commit sin on sex? So my symptoms keep on going and never disappear. Can anyone help me? HELP, I really need help. This anxiety makes me want to commit suicide.
Can anyone in the world help me out of this unknown pain? Strange Pain,
which will keep on going 24 hours a day.
As you may recall, I have periodic
caudal blocks which help - my next one is due next week and things are pretty
grim at present - managing work just about but everything else is down to
nothing - once I manage to drive home, I collapse into a heap despite using
painkillers and then to bed early - when things are this bad, I also end up
getting up at night....real fun.
20. I recently had the Targis microwave procedure TUMT for my chronic prostatitis that I have had for 22 years. I had it three months ago and am NO better, $10,000 later. I also have no excretions upon ejaculation it is a dry orgasm. Could someone please help me with an answer, Thank you
My husband had a
TUMT done 3 yrs ago for Chronic Prostatitis. It just gave him a
NEW pain. My advise is DONT, DO NOT, NADA, NON
22. I want to tell you about the patient at Vanderbuilt Urologic Clinic, who had to have his penis removed after the TUMT procedure.. Something went very very wrong during the treatment. He is now suing Vanderbuilt Urologic Clinic for 80 milliions.
23. My Doctor's philosophy was "prostatitis doesn't cause too much pain"! Yeah, sure Doc! I really think this attitude is a serious national problem. It has got to go. Patients must not put up with this sort of comment. If you've got pain, you've got pain. You know. People shouldn't call you a liar. Instead, as the pain clinic you sought out, they should help. firstname.lastname@example.org
24. All the guys that I talked to that have had prostate removed before cancer spreading are very happy. Are not prostate removals by qualified surgeons better now than years ago? At Mayo they told me I would be taking ABX the rest of my life and after l8 mo I am on 6th one to no avail. I am 53 but if a surgeon feels my CPPS will be better with removal wouldnt I be crazy not to have it removed? Prostate pain is very dominating and eventually if you live long enough everyone will get cancer so why continue to torture yourself going in an endless circle with no chance but suffering to look forward to?
25. I am now in year four with prostatitis. Two years ago the pain was so bad my consultant done a TURP and said it would reduce the pain by about 60%. How wrong he was. At the moment the pain is terrible. I am taking MST 100mg x 6 daily, this is a slow release morphine and also Proscar to shrink the little devil. More pills Naprosyn 500 twice daily plus I take Ibrufen as well, but I still can not get on top of the pain. I should be taking another six week course of Ciprofloxacin antibiotics. After three days of taking these, the pain gets so bad the only thing that will help is lying flat for hours on end or floating in water to take the weight of it. Does anyone know why antibiotics make it worse, it is allways the same whatever antibiotics I take. Also I am taking Garlic caps, Quercetin tabs, tried saw palmetto and I am taking Akult daily but can not get on top of this pain. Does anyone know if some foods are known to cause problems with prostatis.
When the pain is very bad my stomach swells like a balloon. Does anyone else have the same problem, its that bad sometimes I have to wear jogging bottoms as I can not do up any of my trousers.
26. Hi Ray, It seems most prostate sufferers dont mention such severe pain. With me though the pain was unbearable - like you. It was hard to endure and lasted for about 12 years in intensity. I tried many things just to get a little relief. Personally I found no painkillers any use. I even took morphine pills (which I bought illegally) but none seemed to reach this type of pain. I also had epidurals and that didnt help the pain. Then I went to Italy and had the prostate injected and this was a turning point. The pain was still there but different and graduelly became more bearable. Now I feel more in control of life with a lot less pain than before. By no means cured and still puzzled as to the cause of this. Incidently over the years I took loads of antibiotics and also stint of 9 months of heavey duty antibiotics. The conclusion is for me they just didnt work - not taken in a pill form anyway.
About three years ago, I went to an emergency room for a discharge from my
penis. This was a thick, cloudy discharge that would occur sometimes at the end
of urinating, or sometimes just on it's own. Well, the discharge went away, then
came back like a year and a half later for a day or two, then disappeared again.
But now, three years since my
28. I have been suffering from chronic prostatitis and its symptoms on and off for a few years now. The couple of urologists that I have seen have generally tried antibiotics like Cipro, sometimes I would get relief for a while. Recently my symptoms have increased and gotten worse. For the last few months I have suffered with pain in the penis, testes, lower back, upper and lower legs, frequent urination and bladder discomfort. Is there any hope, any suggestions. I have become so tense from these symptoms, like I am having attacks of anxiety.
29. Hi. I recently started dating a great guy who was officially diagnosed with prostatitis yesterday. He told me it was no big deal but then proceeded to tell me that my sex drive was too high and we need to take it slow and steady etc. I was flabbergasted, confused he's hot he's cold and I don't know what to do. He says it does not hurt a lot, but I feel bad hurting him at all. I have a "normal" sex drive and I don't like being blamed. What should the girl do about a guy with prostatitis?
30. I am 53 years old, and have had problems with my prostate for some time now. One quick question that I will start out with is that my semen has become extremely thick, so thick that sometimes when I ejaculate it does not come out of my penis until I'm nearly done with the orgasm. At that point it just dribbles out in a thick mass. Has anyone had this experience?
I have gone to a Urologist and he did an ultrasound on my prostrate. I saw the pictures and my prostate looked white. The Doctor said it was from all the infection I have had over the years. He gave me some antibiotics and sent me home.
31. My name is Dave also 44. I have been having problems for many years and I can say that I have been to hell and back. I started many years ago when I saw a urologist who did a cystoscope and said I had a chronic infection. I was given a bottle of tablets and told to take them for 6 weeks. No improvement but being young thought I would get over it. Not the case. This was about 20 years ago.
I have had doctors tell me I have prostatitis, Pelvic pain Syndrome and peyronies all of which has not been confirmed. My own GP has now said there is nothing he can do for me. I have been very depressed for ages and do not know where to turn. I am trying to keep my relationship together, I have two kids but my mood is not good and self esteem is on the floor.
If anyone has any advice I would be pleased to hear. I suffer everyday and I think I have something wrong with the nerves in the lower region and help or advise would be appreciated. I can feel the pain everyday and lightly pinching the urethra starts a stabbing, stinging nettle effect through the penis, scrotum, and backside. I am sure something is trapped but cannot get anyone to understand or listen. I am looked at as if it is all in my head, but I can assure you it is not.
32. My question for other sufferers/experts on Chronic Prostatitis/CP is that ever since I've had CP I've noticed a diminshing of phyiscal sexual feeling at orgasm. No problems with erection and foreplay but at orgasm I no longer have the physical sensation of ejaculation. There is a feeling of deep-seated climax but gone is that sensation of a pumping, muscular contraction and the feeling of semen travelling along the urethra. To be honest I have to examine the end of my penis to see if I have ejaculated!
33. I have reduced semen volume as well along with a very noticeable thickening of my semen. When I have a flare up I also notice what I call a delayed ejaculation. I start to ejaculate, but there is about a 3 second delay before any fluid actually comes out, and when it does it's very thick. Kind of like trying to ejaculate tapioca, believe me I find no humor in that statement. I long for the days when I could ejaculate normally.
I am 21 years old and have been having a
problem for about a year now. It started as having sporadic pains in my
testicles. Sharp shooting pains that would last a second, and wouldn't
seem to happen for any particular reason. I
also have a problem with ejaculation - it feels like the semen is getting
"stuck" - not very much comes out and there is no force to it at all.
I'm not sure if these two issues are related but they have both been going on
for a year. I have seen three different urologists who can't tell me what's
wrong. I've had a testicular ultrasound, countless DRE's, a bunch of urinalyses.
My doctor doesn't seem to be concerned that I have no pressure to my ejaculate
and that is what scares me the most. Does anyone know of what this could be or
having similar experiences?
IBS and CP are definitely linked.
I have suffered with both since starting with CP 14 years ago. Perhaps someone
can explain why?
I beg to differ. I'm a
doctor who's been suffering from prostatitis for 12 years. I'd give
up any amount of money to get over it and live a normal life. Doctor's can't
help you (or me) because there's no proven treatment. There's no magic pill.
It's not that they don't care, urologists
are surgeons, and there's no surgical cure to prostatitis. They
want you "out of their face" cause it's tough when a patient is in
front of you, and you have no answer. Plus in the current climate, lawyers have
ruined everything so you do care less about the patients, and spend the
whole day just "retracing your steps" and constantly re-checking your
work to make sure you're not going to have a lawsuit on your hands. All the
lawsuit stress makes it difficult to care about much else.
37. Dear All. I have been diagnosed with prostatis fairly recently (January 05) although I've suffered prostate problems for about 5 years. I also have Peyronie's disease (anyone else?). The most intense pain is in my perineum and is usually brought on by walking/exercise. The doctors can find no trace of infection, following two endoscopy investigations (painful) and video urodynamics. I am on carbamazapine to dull the pain, which is working to some extent. Acupuncture seems to be a way forward. After 8 weeks of treatment it seems to be decreasing the pain. My general impression is that the urologists (3 seen) seem mystified. I spend most of my time sitting or lying down to avoid the pain. Is this common? Nairn
38. I've had prostatitis for about 8 months now and I was still 19 at the time. I'm 20 now and keep questioning in disbelief at how I could get something like this so young. As yet I fail to get any real hope for curing this condition which i have no idea how I got. I've just been moved from antibiotic to antibiotic and read 101 different arguments about its cause and treatment.
I think it's a good idea that people like yourselves are interested in pursuing interest in this field, as I think not just because I'm a sufferer that its a condition that is not taken seriously enough. Especially the psycological side of it, the very fact of the word chronic hanging over the condition gets me so down, I'm 20 and have this thing for the rest of my life, its a terrible thought.
However in reply all that I've been given is well, there are worse things let's get this in perspective, its not as serious as etc. Which I think is an appaling way to treat a condition which from reading seems to be so common, yet so unknown and unreasearched. Dan
39. I suffer prostatitis and ME/CFS. Both conditions have a lot in common, meaning that both get ignored by the medics and people suffer in isolated silence. Phil
40. On my fourteenth birthday I came down with a fever. My parents took me to our general practitioner, who initially diagnosed me with a sinus infection. He then gave me an antibiotic and sent me home for some bed rest. After a week my fever had not broken. When my parents called the doctor again, he told us to go immediately to the hospital. After running several tests, they diagnosed me with acute prostatitis. Part of the reason the doctor had such a hard time figuring out what was wrong with me was because it is extremely rare for a fourteen-year-old to have prostatitis. It just never really entered his mind. I was in the hospital for about a week hooked up to an IV. The also gave me injections of some type of antibiotic every six hours. Finally, my fever broke, and I was able to go home.
twelve years later, my wife miscarried our first child. We decided to try again
immediately. We didn’t have any problem with the first conception, so we
didn’t anticipate any problem doing it again. But weeks turned into months and
months dragged into years, and still no child. As is the case with most
infertile couples, my wife went to the doctor first. She did have some minor
problems, so the doctor put her on medication. However, it wasn't clear that
this alone was really the issue. So over time, she persuaded me to go see a
urologist. Although I didn’t have
any symptoms at that time, he quickly diagnosed me with prostatitis. He gave me
an antibiotic and then other medications. After tests, prescriptions, tears, and
prayers, the Lord blessed us with twin girls.
41. I have had it for just over 2 years now and have had it since I was 22, I am now 24. It has plagued my life for the last two years and caused me a great deal of upset and heart ache. The one person you think you can turn to, your doctor, is worse then useless and the fact, like you say, that it is not life threatening just means it figures low on the Urological worlds list of priorities. I am too on anti-biotics, which are helping but after having to go privately I feel it is probably too little too late for me. It is a very sobering thought that I may be stuck with it for life!
biggest battle for me, is the battle against my
nerves. I feel I have had to
become very brave and face a lot of fears I never knew existed. Try and stay
strong, the answer is out there and there are people like ourselves that
understand and sympathise with you. Good Luck Mike.
I have had pain in prostate area for over
15 years. Been to many doctors. Had many many test. They all showed nothing.
Even had TURP in 1999. Nothing helps. I cannot sit. If
I sit in any chair for a couple of minutes, I will have pain for days after.
Some days are better than others but very few are pain free. Anyone have
anything like this?
Has anyone noticed their semen turning more yellow in color after the onset
of prostatitis? Could that be an indication of infection? I notice that when the
semen dries and solidifies it turns even deeper yellow. It
wasn't like this before.
44. Hey friends. I have been a sufferer of this disease 6 years now. I am 27 years old. My main symptom that has been driving me nuts is urination frequency. I get discomfort after 1 hour and have to go to the bathroom. I wake up at night and don't get much sleep. Has anyone has this symptoms? And if so how did you controlled it? Right now I am at Dr Polacaheck treatment. I have to say that in the past 6 years there were times that I thought I was cured, but I was wrong.
45. I've had acute bacterial prostatitis for six months now, and perhaps I am about to fall into the Chronic group as my inflammation has still not gone. I feel very isolated and lonely in my thoughts as this illness strips me of dignity and cannot be talked about socially and leaves me often with the burden of heavy thoughts.
I'm so glad of my faith and my family and close friends I really would be lost without these closest friendships, people who I can tell everything to and trust.
I currently feel GPs are near useless and maybe even dangerous in their ignorance of this disease and wondering what to do next? Any ideas I will be grateful or just for someone else to identify that they know what I am going through would be somewhat comforting!
Best wishes Steve
46. My "hubby" has just been diagnosed with CPPS. He's only 30 and has taken it very badly. Becoming secretive and disinterested in everything and everyone.
I am trying my very hardest to understand and reassure him (especially that the lack of sex is not a problem). I think his ego has been dented and he is obviously in a lot of discomfort. He is just very reluctant to talk to me or anyone for that matter. Any tips would be useful.
47. I am still worried about things but am going to make contact with GP some day soon. I have taken Cipro for almost 4 weeks now, on 6 week course, but no difference except more ease during intercourse etc. Pain on and off most days, find it worse sitting for periods of time. It almost seems that I am sitting on an egg at times "I hope that doesn't sound silly!". Face and ears still burning off me after a days work. Tiredness creeping in. I do hope something can be done to help me and all you sufferers out there. I know that what we have is nothing compared to others less fortunate so fingers crossed that the future looks brighter. I guess the brighter nights are coming now and summer nears closer and I reckon a lot of walking is now in order. I could be doing with loosing a few pounds anyway! Hope to read more from you all soon.
48. I'm on my second bout of prostatitis. The first being from aged 17 to around 22 and this one from 27 to now (31). My main symptom is agonizing pain after ejaculation: It happens about 1 in 3 times and I have to virtually knock myself out with dihydrocodeine to deal with it; as such I completely abstain. I'm pretty sure that the first time it cleared up was after I started ejaculating more frequently, but I just can't bring myself to do it now. It's like playing Russian roulette with 2 bullets in a 6 barrel gun.
49. Hi, I read somewhere in one of the articles from a recent Conference or in comments upon this that the toilet is often regarded by sufferers as "the best seat in the house". Either in the same article or a response it was suggested that we should try to "copy" a toilet seat using something like a gardener's kneeling pad. These items are made from a sort of dense polystyrene type material and, while quite supportive, they are also fairly soft and it is also relatively easy to cut a portion out of the centre to mimic a toilet seat. Hope this helps.
50. Perhaps members of BPSA are not sufficiently aware of the significance of his proposals. Many of us, including myself, suffer multiple problems. In addition to CPPS there is also sexual dysfunction, IBS, and most predominantly the PAIN. Pain in the lower back, groin, penis, legs, hips and sometimes the feet. If, as I have done, you wanted to address all those issues you would have to see many different medical specialists. Dr. Baranowski is proposing a ONE STOP SHOP where clearly defined conditions can be diagnosed and treated. What remains will be a variety of pain syndromes like CPPS and IBS which can also be dealt with by the multi disciplinary medical team.
51. My name is Stuart and I was diagnosed with prostatitis 2 weeks ago. Although I was diagnosed with prostatitis 2 weeks ago I think I may have had the condition for some time. I have had a reduced urine flow and lowered libido for some time but until January I had no pain or discomfort. Then I started experiencing discomfort in the end of my penis, and the symptoms have spread to my lower abdomen, testicles and sometimes lower back. During my waking hours I get little if no relief from these. I have been prescribed ciproflovaxin with anti-inflammatory as well as being told to take pain killers. I have been taking these for ten days with no real effect. The only thing that seems to dull the symptoms is alcohol which unfortunately lifts my spirits at the same time. I have read some of your letters and have started to take natural garlic along with cranberry juice. There seems to be a slow recovery ahead and any advice would be welcome.
Sussed out myself what I was suffering from - not that the symptoms were
stereotypical. Main problem is the groin pain and the
discharge through penis on bowel movement. Doc confirmed a couple of
weeks ago that it is the chronic prostatitis version I have.
I have just seen the doctor and the
additional symptoms I am suffering are pains in most of my joints and
cracking/dry skin. He said I have a
reactive arthritis due to the chronic bacterial prostatitis, and told
me to keep on taking the morphgesic and diclofenac, and has given me
some cream for the dry skin.
54. Diagnosed with Chronic Prostatitis in January 1994, I have lived with pain and discomfort (not to mention more usual prostate symptoms such as urgency, frequency, pain on urinating) for over 11 years. I was a previously fit and healthy middle class professional then in my mid forties. Since 1994, I had not had one single day when pain management wasn't the over-riding issue in my life. As with many chronic pain sufferers, I managed to keep working but gave up any kind of social life, lost fitness and began to look forward to retirement just to end the daily struggle of getting to a (thankfully very flexible) job.
55. Hi, My name is Chris and I've been suffering from prostatitis for a year and a half now. I am 27 years old and I am generally a very healthy person (I make sure to go running about 4 or 5 times a week). The only thing that seems to help me is antibacterial drugs, which I'm sure is the same for most men who suffer from this. I was naive at first to believe that 2 weeks of medication would get rid of this problem. My first 6 months with this condition were pure hell, I wouldn't wish it on anybody. My family physician really had no idea what it was or how to treat it, so that was no help. In fact I had to go in with a print off from WebMD to show them my symptoms. When they referred me to a urologist I thought "Yes! This is finally going to end!" Boy was I wrong. The doctor didn't really seem to care much about it, but he was reassuring in that he seemed to have a lot of experience with this problem. Alas, I still have prostatitis, it never goes away nor do I believe it ever will. Luckily, whenever my symptoms do flare up I simply start on another course of antibiotics and then I feel better - I hope that always works, but who knows since nobody seems to know anything? Thanks for starting this community. It will be nice to know there are others out there with this pain in the ass (literally). Misery loves company, right?
56. Face it: Chronic non-bacterial prostatitis is a wastebasket diagnosis. Most of us who have been told we have it actually have something else that a doctor has not yet detected.
57. It took six years and six Urologists before it was finally confirmed I had Cystitis and all my problems were not coming from some type of Prostatitis. Bladder installations of meds finally stopped most of the pain which was unbearable at times.
58. I was diagnosed several months back with prostatitis. My symptom has been a continually sore penis for months. Now in the last few weeks, I have had an increase in the urgency to urinate, and the output of urine. My urine flow is strong, approx. 30-35ml per second. My understanding of prostatitis is increased frequency, but restricted flow and less volume. I have increased frequency and increased daily output. Is anyone else having similar symptoms? I have to go about 10-12 times a day which is about double what I used to go.
59. I believe it has been established that removal of the prostate does not cure prostatitis and this is certainly true in my case. Shortly after my radical prostatectomy my symptoms returned. Burning pain from penis to anus, voiding pain etc; exactly as before. Surely this is at least an indication that prostatitis may not always confined to the prostate.
60. I was diagnosed with prostatitis back in Jan 2006. I am 35 and the pain pressure and discomfort is a real pain and very frustrating. Last night I had a horrifying experience. My ejaculate was completely bloody. You could imagine my horror upon the release that is the last thing that you expect to see. Called my Dr and he said that this is sometimes normal. Has anyone else experienced this? Please let me know, I am freaking the hell out.
61. I'm 27 years old and have been suffering from a young age (around 14/15) of a whole range of problems involving the bladder, prostate, testicle and bowel (basically the right groin/abdominal region). The symptoms have varied over the years but the main problem that remains seems to be inflammatory based - namely pain after ejaculation which in turn flares everything up making it uncomfortable sitting down, bowel irritation and increased need to unrinate. I'm only able to masturbate once a week and they problem has meant that I've never been able to have a sexual relationship.
Over the years I've seen countless consultants varying from Urologist, Neurologists, Gastroentrologists, Pain Specialists and Pyschologists. I've had a whole range of tests (blood, urine, flow) and scans (MRI of the spine and hip, X-rays, ultrasounds of the bladder and prostate). The one test that did highlight a problem was when I had a camera into the bladder and they discovered a stricture mid-way down the urethra which they dilated. I've been on various courses of anti-biotics but the problem still exists.
At present I'm in limbo - the Urologist/Pain Specialist can't determine a physical cause for the problem so they referred me to a pyschologist. However, the pyschologist can't help because he believes there is an underlying physical problem (!) that needs to be rectified before he can effectively work on the pyschological issues such as depression and low self esteem which currently affects me.
62. I'm 32 years old and live in Spain (although I am British), 3 years ago I suddenly had terrible pain and had to be taken to hospital. I was in hospital for 3 days on antibiotics via a drip with pain killers. After several more days it appeared to clear up and the Urologist put it down to an infection although a CAT scan showed a large cyst inside the prostate.
Since then I have had on off cases off pain, but this year since February it has worsened a lot, and I have again been off work and am currently working half days. I have had several CAT scans and now it can finally be seen that I have 2 cysts, one is as large as half the prostate and the other slightly smaller. At first the doctor put me on Septrin, and I was taking this for over 3 months. I'm now taking a localized anti-inflammatory drug, which to be honest doesn't seem to help much. I'm also taking Ibuprofen which seems to help relieve the pain and also acts as anti-inflammatory.
63. This last week for no apparent reason my prostatitis has suddenly gone very very very bad again. I've been a sufferer now for almost 2 years (since I was 24) but it has not been this bad in almost 15 months.
I'm currently at work feeling very low and cannot concentrate at all. My current symptoms are: Pain in the bottom, feels like I'm sitting on a cricket ball. Pain down my right leg. Sharp lower abdominal type pains Extreme penile pain. I can't take the penile pain anymore, other pains I can cope with but I really struggle with this much penile pain. It's almost impossible for me to tell when I need the toilet at the moment. I'm completely fed up with life, to me this is no way to live. It's not like it will get better as all it does is improve for a while then relapse, last time I was this bad it took 4/5 months to improve.
During my last serious attack I was on ciprofloxacin for 14 weeks, this led to me developing reactive arthritis in my knee and elbow joints so don't want to take that route again. I'm currently not on any medication except I drink some aloe Vera drinking gel each morning, I've been on this for months now so with this latest attack I doubt now if it's doing any good. I've just ordered some Quercetin so hopefully that will arrive soon. My question is does anyone know if I can take anything that will help the penile pain, I'm taking lots of paracetamol at the moment but that is having very little effect.
I given up on doctors and specialists as all they do is say you have to learn to live with it, it will eventually burn itself out. Well that's easy said then done when it's this bad.
Hi Russell, I having the same sort of thing as you but I get prostatic
bleeding as well as penile pain every two to three
all. I'm 34 and in the last week have been diagnosed with Chronic Prostatitis
(or CPPS). I work within the NHS and to be honest I had never even heard of
this. I was intially being treated for epididimytos(?). I had been for an
ultrasound the week before and the ultrasonographer had no sympathy for me and
proceeded to tell me that all I had was varicoceles and nothing else, leaving me
wondering if it was all in my head. I
have been off work for the past 5 weeks as I find both sitting for any amount of
time painful and also standing and walking around both painful in the groin area
(very similar to that of a groin strain) and also I feel totally shattered after
a while, so much so that after going into work last week the
following day I spent in bed. I find that my testicles really ache constantly
and my back passage feels like I am pushing although I am not. The urologist has
advised me to ejaculate as often as possible but I find this actually hurts both
during and especially after and having read some earlier posts it seems that
advoiding this is possibly the right thing to do. Could anyone pass on any
advice that may find useful and any things that may help with the pain (trust me
pethadine doesn't work just sends me to sleep). I know that baths help put
something more practicle would be better. Also what about work I don't know when
this will get any better I was told between 3 and 6 months and some people
suffer for ever is this true?
My doc did DRE and said prostate was boggy. Did 6 weeks Cipro and 6 weeks Ofloxacin
but no improvement. Been this way 3 years and I am only 32 yrs old. Had MRI scan
and low diffuse signal in keeping with acute prostatitis, but why antibiotics do
nothing? They help for first few days. My symptoms are this: Muscle spasms,
perineum and cremaster when I piss and defecate and when I walk or stand so all
I can do is lay down for 3 years! It’s
a total nightmare. I don't want more antibiotics, tried some pelvic
exercises but always makes things worse? I am at total loss what is causing
this and worst of all it is getting worse not better, cannot walk.
67. Just so you know I work for the caring profession in a highly physical job (a Therapeutic Radiographer) so I have a knowledge of the C word and also prostate. I was diagnosed in mid August with CPPS (as we all like to call it) after originally being treated for epididymitis for a month and finally being seen by a urologist. I am on trimethaprin which after about 8 weeks has finally started to have an effect and for the past 3 days I have been feeling a lot better until 11.20 this morning.
I was asked to attend a meeting with work who have asked why this particular disease has stopped me from attending work for the last 9 weeks, after trying to explain the symptoms, feeling like I need a poo constantly, erectile problems, urinary problems, blood from my back passage (which is caused by straining, to such an effect I passed out on Friday) not to mention testicles that seem to swell up overnight and the run of the mill feeling totally shattered all the time. I have now been told that unless I report back to work on Monday (I have a doctors certificate for the next month) I shall be sent to occupational health and if needs be disciplinary action "taken as appropriate". I was just wondering if anyone had any good articles that I could shove under peoples nose to prove that this does effect people and its not just a case of take a few tablets and it will all get better. Oh and just to cheer me up when I attended said meeting it started by "well I see you had no problems getting her for this". Sorry but I just need a friendly ear and to let of some steam.
68. Hi, my name is Rosie and my partner suffers from this painful condition. He has done so for about 5 years now. Mark was on antibiotics for a year and this did help short term however he refuses to try further antibiotics as his liver was damaged due to adverse effects caused by long term usage.
I see another member has asked about sex - is it good or should one abstain. I ask the same question as Mark and I no longer have a sex life which is putting a real strain on our relationship. I have always been very supportive and understanding of the condition and never put pressure on him to make love. The sad part is that there is no physical contact at all and as we are only 47 this is hard to live with. Mark, for the last two years, has had a problem maintaining an erection regardless of stimulation. I know this is an extremely personal and sensitive area to discuss, especially for a new member however I am afraid that we will drift further and further apart.
Mark is very healthy besides this condition as am I. We love walking and we eat well and very carefully to avoid caffeine, sugar, dairy products etc.
I found this site researching on the internet and I hope that someone may be able to offer some help/advice/info. I love Mark dearly, and I am so afraid that I am 'losing' him to prostatitis.
69. Hello Rosie, a bit late in the night for me to reply, but thought I should as I was very touched by your email. What touched me most was the fact that you are not having a sex life. I am 49 and could not consider not having a sex life. I have erectile problems (ED) because of prostatitis. There is help for this. I am lucky in that I live in an area where there is a sex therapist available on the NHS, she prescribes me Cialis which overcomes this problem. It is not for me to prescribe what the solution is for you two regarding the sex side of your relationship, but there is help 'out there' should you seek it. My GP is very supportive, but said he could not prescribe anything for ED as I didn't fall into any of the government prescribed categories, so I went to my local STD clinic who were most helpful. Failing this Cialis and Viagra can be got 'on the net' or from other sources!
Kind regards Steven
70. I wonder if there's anyone out there who can enlighten me as to how I can possibly alleviate the pain in my backside. I am a 45 year old male taxi driver who has just been diagnosed with non-bacterial chronic prostatitis. I am otherwise fit and healthy (!) as has been proved by the amount of tests I've undergone over the last 4 weeks i.e. CT/MRI/ultrasound scans, cystocopy, etc. I love my job and only went to my GP a couple of months ago when I needed to urinate much more often than usual. The last 6 weeks have been horrendous. The pain high up in my backside has turned out to be an inflamed prostate, but my urologist has said there really isn't any more that he can do and to take pain killers and get on with my life. I cannot sit down even on a comfy chair let alone sit in my cab. Even when the pain subsides (and I must say it was excruitiating for a couple of weeks) I am left with quite a bad "ache" in that place. I also feel nauseous and really depressed. I would love to hear from anyone else who has tips on pain relief for them. Also, I have read about "flare-ups" - how long can they last and do they ever really go away. Thanks, Fred.
71. I have noticed recently that I have been having difficulty getting a "full" erection and even harder (no pun intended!) time maintaining one. I'm nearly 28 and have been suffering with this prostate/bowel/depression since I was at least 15 (although during that period it didn't have such a grip on my life) and I've become less and less active. I also have a varicocele in the right testicle and get a lot of aching and pain after walking/standing, even lying on my right hand side. However, my semen still continues to look discoloured (at times it has a yellow tinge to it) and it has a strong "musky" smell to it.
I'm a shy and quite introverted person and this probably hasn't help my problem. Are other sufferers here people who tend to keep themselves to themselves? Is there a link between your "mental health" and prostate health?
72. Happy new year to all my fellow sufferers. I've had this thing for 3 years now, tried anti-biotics, acupuncture, a cystoscopy (which has killed a lot of feelings in the tip of my penis), prostatic massage and various herbal cures. I noticed that the best therapy is a good night's sleep which means my mornings are relatively irritation free.
73. I have it so far 7 months. I have researched into this ailment quite thoroughly. As a previous medical-related professional, I found that nobody knows too much about its cause nor knows definitely how to treat it. Since, its treatment requires rather long term of anything, that I am completely lost what really works. I found out that even urologist does not know how to treat it. All they do is to eliminate the possibility of bad things like cancer. There are so many unanswered questions as well as dilemma.
Some people suggested ejeculation will release prostate pressure and even suggested 3 times a week. If the prostate is inflammed, wouldn't one ejeculation will aggravate it enough to make it more inflammed ? I found that ejeculation is bad for my inflammed prostate, at least for me.
74. Hi! I've had Chronic Prostatitis for 10 years and I’m now 28 years old. I developed it after getting a UTI or non-specific urinary tract inflammation. I have been to many hospitals while I have moved around the country with various jobs and find after a while I drop out of the loop in terms of appointments, as they never seem to have any ideas of how to cure me. My friend here in Newcastle is an Urologist and he has told me in no certain terms that I am stuck with the condition for life. I cannot accept this as I still cling to success stories I read about on websites such as this one.
am currently in a very bad way and doing my desk job is becoming
increasingly hard. I need to go to toilet so often it is embarrassing and
when I'm at my desk I'm in so
much pain I cannot concentrate. I have always been told that
this condition goes though cycles and to look at it like a graph of peaks
and troughs. I should be in a strong position to fight this condition as
my good friend is an urologist and my girlfriend is a Pharmacist. But I
feel that they still have no answers to help me.
75. I'm 16 and I've suffered with prostatitis for a couple years now, it has as you can imagine affected my social life and mental health at my age. I often don't see myself as a normal person because of it, I can't really talk to anyone about it either. It got progressively worse up until this summer and since then has gotten a little better. I was on antibiotics for 4 months and the symptoms never left so I'm convinced it is not an infection.
odd thing is my symptoms have changed. My symptoms used to be pain during
and after ejaculation. I had burning when I urinated but only after
ejaculation. Now it seems my symptoms are burning when I urinate,
discomfort when I defecate, a general non-stop pain in my groin and I
actually noticed a little lower back pain today as well. None of the
symptoms are that severe, but they are there and it bothers me a lot. I
still have a little pain after ejaculation but it's nothing like it used
76. Hi, I have been suffering on and off with Chronic Prostatitis for about two years now and my Urologist informed me that the Stamey test was not very conclusive and refused to carry it out. I did however have an ultrasound carried out on my prostate which did show signs of calcifications. I understand that these in themselves can aggrevate the prostate. I also have calcifications in my testes. Is there any medication/diet that can reduce/prevent any further production of these stones?
I have had prostatitis since 1972
and after trying just about every treatment going and about a dozen
urologists here in UK and in USA. I have been on pain management for the
past ten years. What seems to work for me is a combination of the
following: Paracetamol, Acupan, morphine sulphate, OxyContin and medicinal
cannabis. I hope you can get through to your GP just how
painful this disease is and it can bring you right down. In the
early 70:s I was sent to a shrinks instead of urologists anyway! I hope
you find a way to relieve your pain.
78. I have been a prostatis sufferer for a few years now, currently suffering from a lot of pain at the tip of my penis but I'm also currently suffering from bowel problems. I have abdominal and bowel pain and often feel like I need to go and am bloated. I have read that other people suffer from this and wonder how or if the two condtions are related or could it be due to overuse of medication?
79. My name is Lawrence. I'm 34 years old and live in New Mexico, USA. I was diagnosed with prostatitis when I was 17 years old and over the years I have taken tons of antibiotics hoping to feel better, but never really getting nowhere. Most of the time I have mild symptoms and occasionally I have excruciatingly painful flare-ups. Been doing good for the past week or so. Really would like to hear from other members how you cope with pain. Your friendship would mean a lot to me. Your are welcome to reply to this post or write to me.
80. Prostatitis is the bane of my existence, but the worst of it for me is feeling very little or no pleasure at orgasm. I don't have much pain in the area at any time, except for a little soreness after ejaculation. I don't suffer from a low or decreasing libido and I don't take antidepressants. I'm 39, not so young anymore, but I never thought I'd feel like sex would become so unsatisfying. I usually feel like I have to urinate (as opposed to feeling pleasure) at orgasm, even though I have managed to give up caffeine and consume very little alcohol and drink nothing for a few hours before sex. My urologist is stumped, so to speak. Has anyone had this problem and then managed to get it fixed?
My name is Mike and I live in Israel. I have had chronic
Bacterial Prostatitis for nearly 5 years now. Reading your post brings all
sorts of feelings to a head, as I know exactly how you feel. I also realize
that just hearing that from someone can be a major relief in itself. The 2
major things you need to remember are:
Learn to demand what you want from Doctors and NEVER let anyone tell you
that there is nothing wrong. I hope you manage to get the answers you need
and I assure you that everyone here is more than happy to share their
advice and experience. Be prepared for a long journey though. This is
something that is going to take time and more willpower than you realize
82. Ben, many sufferers, like myself, started with a urinary tract infection which eventually cleared after treatment with anti-biotics, leaving behind chronic prostatitis. I don't see how this can be connected to any kind of nervous system disorder where the cause is an infection?
83. In my symptoms which I have had since I was 15 and now 33. The pain is not so mush a pain but an intense sensitivity in the prostate area between the legs and up the urethra. When I first had this attack at 15 it lasted a day then went on its own with very occasional flare ups in-between until I was 20 and then is stayed with me for 3 years before easing away again on its own without treatment (had long given up on my GP and antibiotics).
Anyway I am currently in a 6 year attack again which has eased off to about 90% thank god over last few years without any treatment which has worked. I have never had the golf ball feeling just like an intense sensitive hot flushing, stinging /burning sensation in-between legs and penis. I can some time beat bad flare up by standing over the toilet and just totally relaxing while urine dribbles out until the level of sensitivity dies down to a manageable level and then I'm am left for a constant ache.
84. I was on Cipro for 12 weeks when I first had prostatitis. Since then I have had no end of issues and have been diagnosed with IBS. I probably always had a tendency to this problem (looking back with hindsight) but the Cipro brought it out big time. Nearly a year later and I still have some problems - some days no worries and others I feel bloated, urge to go all the time etc. I have found that drinking plenty of green tea, having an Actimel each day, taking Acidophilus and when I get a flare up Colpermin helps also a great deal.
85. I have (almost) given up sex for the last two years or so, any kind of sex/ejaculation results in at least two weeks of misery. It always starts sometime the day after with the symptoms of UTI, dark cloudy urine, pain on urination, sweating & mild fever, blood in urine only on one occasion, greatly increased pain & frequency & often red, sore or swollen end of penis. This gradually subsides in the days following & these symptoms mean that it is definitely not worth it. I do believe that this is some sort of exacerbation of an infection that is there all of the time as these are only severe forms of symptoms that are essentially present all the time. The only other thing that makes it worse that I know of is alcohol, regular drinking over a few days, the occasion drink has little effect.
86. My symptoms started early in December 2006. It started with a need to urinate and spasms in my groin. Since then it has progressed to outright pain and burning in my perineal area and the rectum. I feel like I'm sitting on a golf ball. I've been on numerous antibiotics, Querecitin, Saw palmetto, Flomax, and Detrol. I've had a cystoscopy, a colonscopy and an MRI. There was a period of about 4-5 weeks when the urinary symptoms disappeared, but the pain has been constant and occasionally severe. My sleep habits have been effected greatly.
Before December I was happy, healthy, athletic, sexually active (with my wife), and reasonably successful in my job. Now I feel like my life is ruined. I'm horribly depressed and I'm afraid to do anything, go anywhere, etc. Does anybody ever get better? How do you guys live like this? I could really use some insight here as I am beginning to have very dark thoughts.
87. I have been having trouble since October 2006 and been on Ciprofloxacin since December 2006. I had 8 days hospital in January with a "very inflamed prostate" so they pumped me full of more antibiotics (via IV). Since my discharge improved I did seem to be making slow progress. That was until last week when my symptoms have returned with a vengeance i.e. frequent visits to the loo (3 or 4 times a night), rectal and perineal pain. In fact I seem to be in constant pain everywhere "down below". All the urologist says is "you'll have good & bad days" or "it takes a long time to heal". Well for last 5 months my life (and my poor wife) has been pretty crap. I am depressed (been on anti depressants since December) and feel so helpless the biggest problem I have is not having anyone to talk to about HOW TO COPE WITH IT? If anyone out there can help I would be most grateful.
88. My wife is frustrated as well. She says I'm "not the same" and I haven't had much of a libido lately. She has been supportive, but she didn't marry the guy I am today (someone with prostate issues at age 36). I feel like I'm ruining our marriage and I don't have much energy to play with my 6-year-old son. I think I could be more positive about the whole thing if there was an end in sight. I laughed about it and made jokes in December. Now I'm just depressed as hell.
I've talked to several people (friends/relations) about this. A lot of them have had prostatis and they've all gotten better with antibiotics.
89. I've been the antibiotics route. Over a long period of time the antibiotics will take a toll on your bowels. When you begin to have bowel problems with this condition you enter into a whole new world of pain. It can become completely unbearable. My Dr. finally put me on Methadone about 2 months ago. A very small dose, only 5 mg 3 times a day. First time in 30 years that I haven't had pain. I urge you to get your Dr. to treat you for pain and save yourself a whole lot of misery. Antibiotics are not justified for this condition. If you can get your Dr. to treat you for pain instead of an unknown infection, you will be one happy trooper. Just my opinion of course.
Unfortunately there are absolutely no drugs that will relieve the pain of prostatitis, except strong opioids. Right now I am absolutely pain free from chronic prostatitis. I know I will have to take the drugs for the rest of my life. I really don't think most Dr's are even aware of how bad the pain and depression can be from this disease.
90. Simon, I certainly agree that there is limited point in taking lots of antibiotics. However, when I asked my GP for a referal to see a Urologist the subject of antibiotics came up, and I explained that I wasn't keen on taking more because my digestion is now pretty bad after taking six courses (orally) in 2005. He asked me what else I thought could be offered, and I had no idea.
This is why I'm keen on the idea of investigation first, because if infection proves NOT to be the root cause, then more antibiotics are presumably a waste of time and may cause more problems. If it IS the root cause, then presuambly another option is needed, because for me antibiotics (at least oral ones) haven't worked!
91. Hello everyone, don't think I've posted before although we've benefited from everyone who has so thanks! I'm wondering if anyone has tried nerve blocks or any more unusual treatments? My partner's had prostatitis 5 years. Having been off work for 9 months its coming near decision time for us but we're loath to throw in the towel yet!
He is in terrible levels of pain constantly. Gabapentin didn't work and gave him the tremors and so many other awful symptoms he's coming off them. He's tried doxasoin, amitryptline, diclofenac, flomax, cipro, ofoflaxin, amoxicillin. ...ad naseum (literally in some cases!). The consultant says there is nothing more he can do, can't recommend anyone who could try something else, doesn't know of any trials for new techniques and generally just looks a bit sad and offers surgery which probably won't work and will leave him with less erectile function than he already has! This doesn't sound like a great idea so we're looking for inspiration! Oh - another thing- do most sufferers reach a point where the pain is constantly between 8-10 on the righter scale- we were told years ago that the condition waxed and waned but it seems in Andrew's case to forget to wane!
for the rant!
92. Hello, I'm new here but I have had my problems for 4 years now, but the erection problem is the biggest problem now. And its making me crazy, in the beginning I had full normal erection, and 2 years later it was little bad, now 4 yeas later its worst, I get erection ( not full ) but when I'm going to have sex "it dies". Do someone have the same? And what helps to this erection problems when you got chronic prostatitis? Have Viagra helped someone? I'm 24 years old feels like my life is over. Its sad for me and my girlfriend. but she's understanding and good. But I'm afraid she well leave me for this some day. I was thinking to test Viagra but I'm not sure that works.
93. After several short courses of antibiotics I still have discomfort in my pubic area. I saw the doctor a few days ago he took blood, and gave me a rectal examination, he said my prostate was fine also my blood was fine too. I am so confused here now, it seems like nobody believes how I am feeling, my sex drive has gone and I have discomfort around my pubic area. Even though the tests came back negative is it still possible I could have non-bacterial prostatitis? If so can I ask/insist the doc puts me on a longer course of cipro? The weeks course of cipro the doctor put me on really seemed to help straight away. Sorry for the rambling but I really need some action now its been 6 weeks since this started and I don't seem to be getting anywhere! The Doctor thinks its in my mind!
94. But I've suffered for years with flare ups after sex - discomfort usually kicks in 24 hours after sex and can last for a week, and can sometimes be very debilitating. No sex, and I can be mostly symptom free.
What helps are hot baths and it's usually better in the mornings as I presume there's some relaxation overnight. I'm 50, and it does seem to be getting worse.
95. And my heart felt sympathy to all suffering from basement level problems. I have been suffering for ten years now and at the moment I am at my worse. Have had no luck with doctors, antibiotics or pain kills at all. At my last appointment I agreed that I am obeviously depressed with this and I am very down at the moment. Well that's me now being wheeled off for counseling, yippy might as well bash my head against the wall. If any one knows how to help the burning in your urethra worse at the last one inch or so, the pain in the testicles, the golf ball, even my back side is raw and sore. Please advise, will certainly need more than counseling soon. Where do I go from here (I am 37 now going on 60!) living in Scotland have had all manner of violations, that seam to make things worse afterwards. Have had all types of antibiotics and I am surprised I have not spontaneously combusted by now. Honestly I can not say if one was definitely helping me. I have not had massages and asked about this and was told this is not necessary. I have also asked about the lumpy jelly like bits in my seamen and cannot remember the response, so obviously it did not satisfy me. Ocasionally these lumpy bits get discharged at the end of a urine stream. I have been married for 16 years, have two kids and have and only had one partner. As you probable know full bloods and urine tests all show nothing. HELP////
96. Hello. I've just joined the BPSA group and I've been suffering from CPPS/prostatitis for nine years. I've seen the best urologists in the UK who have prescribed antibiotics, low dose anti-depressants, bladder neck incision, acupuncture, anti-inflammatory, pain killers, diet change (excluding caffeine, alcohol and spicy food), even pain management and psychiatry sessions. Still here I am, wondering if anyone has any bright ideas or positive experiences?
97. I am female(!) and have been recently diagnosed as having urethral syndrome or female prostatitis due to possible low grade infection of the paraurethral glands (apparently analogous to the male prostate). I have been suffering from prostatitis symptoms for the last 5 years. What I need is an understanding urologist who will help manage my illness, who is up to date on the latest treatments and will do a urine culture to determine what the infection is (if any) and what the antibiotic sensitivity is.
started as a mild aching pain at the top of my urethra and feeling of
swelling that prevented me from pulling up my pelvic
I have seen numerous doctors/consultants over the last 5 years but have had difficulty convincing them I've got a problem at all. It feels like an infection to me but the standard urine test comes back negative. I have mostly been self medicating antibiotics (trough a private GP) and have noticed an improvement when taking some of them but when I stop the symptoms always come back. The latest urogynaecologist I saw in Birmingham suggested I had female prostatism and offered me domestos antibiotics (ofloxacin) but I have already taken Cipro in the past. He has suggested alpha blockers, pain killers, anti-depressants and anti-histamines.
98. I have Prostatitis. I have had this now for over two years. It's only just been diagnosed after lots of visits to the doctors. I have sevear pain in my back, hips, groin, Will it ever go away?
99. I've suffered with prostatitis for quite a few years - i'm 34 now. I have read quite a few of the posts on here and have seen my symptoms described many times to varying degrees: pain in the the groin (left side), inner thighs, testicles (left), perineum, "golf ball up bum", pain in the tip and base of the penis. I have also, from time to time, experienced a burning pain up the bum a few minutes after ejaculation, which can then last for around 30 minutes or so and linger to a lesser degree longer. I have seen a number of urology consultants over the years and have had numerous tests for infections and other things (including having a camera inserted into my bladder through my penis - most unpleasant!) none of which have shown anything untoward.
100. I'm 29 and have had problems in one form of another since I was at least 14/15 and to be honest I can't remember the last time I was able to ejaculate without having some sort of problem afterwards whether it be pain or bowel problems. I have never been able to have sex or any kind of relationship because of this condition so can understand your frustration and depression. What makes it worse is that everyone I know has no concept of what I've been through and I get the usual "well the Dr's haven't found anything so you must be alright" or "other people have to deal with worse things like cancer" etc.
Currently I'm building up my core stability with exercise given to me by the private Sport's physio I'm seeing (no CPPS specialists my way unfortunately) and I've had counseling in the past. At the moment it's a little up and down and I'm still a little concerned there maybe some sort of compression issue with the inguinal canal. I'm still only able to masturbate once a week (if that sometimes) and I've almost given up hope of having an active sex life (or any sort of pain free sex).
101. I was diagnosed with Chlamydia last year after having it for two years. I had painful joints and painful urination but my Doctor never put two and two together, initially. I was treated for it but the pain remained - I was told the pain should subside but it didn't, so I was treated again.
Symptoms: Painful urination, painful ejaculation (which lack of enjoyment during orgasm), short stinging, usually after urinating or when I've been sexually stimulated, teste pain, a swollen penis tip, split stream of urine/sperm, lack of pressure when peeing and with ejaculation (though they said there is no stricture and that my flow is strong, but it's much weaker than it was before). I was given several antibiotics and none of them relieved pain and if they did it was only effective for a day or two. Doxycycline, Erythromycin and Norfloxican, all for several weeks if not months. Tried Ibuprofen, three times a day for three months, to no avail.
My doctor has pretty much said "There's nothing wrong with you, there's nothing more we can do." But it's causing my life hell. I drink at least 2 litres of water a day, plenty of cranberry juice and other fruit juices. I don't drink alcohol at all, I try to avoid milk and don't drink caffeinated drinks.
I've been to my Doctor since then and she's said "Nope. I've never heard a case of this before. What do you want us to do?" She's incredibly patronising and not very helpful. I've been all over the internet looking for solutions and I'm hoping this support group can help!
102. So many men seem to be suffering from yeast. I had to have antibiotics many times in the past because of foot surgery. Then prostatitis began when I was young, bladder pain, irritable bowel, sinus problems. No doctor ever connected up yeast being a problem because of all the strong antibiotics, which had clearly damaged by gut and other systems. With a diagnosis of prostatitis when I had constant pelvic pain once again several years of antibiotics dished out again by doctors and consultants. So all the time the yeast was just getting worse and worse without me knowing it. Women are recognized as having yeast but men are not. This is appalling.
Now got systemic yeast and still not getting proper treatment as no one wants to recognise it. I have all the symptoms, sinus, rectal itch, yeast on the skin in the form of Pityriasis versicolor, stomach trouble, bladder, prostate - the lot and I am only young.
How can you get rid of yeast when it has got to the systemic form? This is a really nasty disease and yet few doctors will even recognize it. The fact that men cannot get diagnosed with this is appalling but it affects your whole immune system and sets up intolerances.
Anyone successful in getting rid of this for good and how did you do it. I take probiotics, prebiotics but it will not shift. The candida yeast diet is horrendous and as I am already slim I feel ill withdrawing too much.”
Any help be appreciated. Thanks.
103. Dear Simon.
I really hope you can help, one of my work colleagues is a patient of yours and he told me that without your help and understanding he would be still be suffering and probably have split with his partner and lost his job. You did more in one visit than anyone else. He really was singing your skills.
My husband has had prostatitis for a number of years. Our love life is non existent, he is so moody, does not talk, his GP just puts him on antibiotics and NOW trying amitriptolin. Can you help, can he see you and how can he get to see you?
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