Prostatitis Forum & Social Network
Acute and chronic prostatitis discussion. Arnon Krongrad, MD, moderator.
I decided to join this site, if for anything else, to just be able to talk about this in a community that might understand. My husband, Paul, has been suffering from severe symptoms of Chronic Prostatitis since around the end of November, 2009. His old GP recognized the symptoms right away and referred him to a urologist who then officially diagnosed him with CP. He has only done medication treatments and one massage session. I know little to nothing about medical terminology and CP even after a year and a half of dealing with it. After reading up on this website it seems my husband is only beginning this awful and long journey.
His old GP was continuing his antibiotic, pain-med, and alpha-blocker treatments in accordance with the uro's approval. The urologist was more of a way to extract money from us and a formality than anything helpful. He also immediately rejected the idea of any kind of surgery. He went to schedule my husband for another expensive prostate massage and when my husband started to complain about how painful and costly it was, the uro shrugged, threw his hands up in the air and said "well, there's no cure for this, so the massage is the only thing I know to do other than refer you to pain management." We cancelled the massage appointment and haven't been back to the uro in about 2 months. We didn't try the pain management doctor he referred yet because the GP was giving Paul hydrocodone which was helping ease the pain a bit.
This month, without notice, his old GP retired from the family practice office we go to and the new GP tried to discontinue the minimal treatment Paul was receiving from them. The new GP decided my husband does not really have CP and that he should seek a 2nd opinion from another urologist. She based this assumption solely on the fact that he's "too young to have CP". Yesterday she examined him rectally because he also had large amounts of blood in his stool yesterday morning, (which I suspect is from deep hemorrhoids, a problem he's had since before the onset of CP, this can only be determined by a coloncoscopy and if you don't have insurance, good luck getting one done) and she even said to him during her exam "your prostate is swollen" to which he said "no shit!". She then had an attitude with him (which I guess is justified, he shouldn't have cussed) and has decided he is just a drug-seeker and told him, verbatim, "there are people in worse situations than you, just get over it". We now need to try and find a new GP. She refuses to write him any narcotics for pain, which is her prerogative, of course, but did write him prescriptions for a new round of cipro and some alpha-blockers. Which is inconsistent with her belief that he "doesn't really have CP." It's all so frustrating and confusing and we feel like there's no help for him out there and no one who can truly offer him some relief. Right now he is in severe pain and only on OTC aleve. He is bed-ridden.
For the last year and a half he has had to spend 99% of his day either in bed or in a chair. He can not walk around or stand for more than 10 or 15 minutes at a time or else he gets sharp, jolting pains that bring him to his knees. His general pain is constant, even when he's sitting; even when he's on hydrocodone, he is debilitated and in severe pain; even after a full dose of antibiotic treatments and alpha-blockers.
He can not work and has been home this whole time, in charge of our 2 year old son. Even doing that is very difficult and as his condition worsens, so does his ability to take care of even himself, let alone a toddler.
I work 50+ hours a week and thankfully most of that I can do from home, but, this family needs Paul back. It's like he's not really even here. We are all feeling pretty hopeless. I try to remain positive which only seems to aggravate him. His anxiety depression worsen right along with the CP condition.
My husband and I have been good friends for over 23 years, lovers for over 20 years, and married for the last 17. I am 39, he is 37. We have three sons ages 16, 7, and 2.
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Hi Patty, I am so sorry to hear how much pain your husband is in. I have been there myself many times, once even smashing my head through a cupboard door just to distract myself from the prostate burning up. If its any consolation I am a lot better than I was at 3.5 years into this awful disease. My pain score was 35 in the beginning. Today it is around 18 and I do enjoy some quality of life now compared to the beginning when I wished myself dead on many days.
Here is a list of what I find very helpful in relieving the pain:
1)Tramadol (The constipating effects however must be offset by an osmotic stool softener and plenty of liquid-find the right balance for you, prune juice is also very helpful in addition)
2)Haemorrhoid suppositories containing a mild steroid such as hydra-cortisone (Very effective at reducing flare ups)
3)AllicinMax garlic supplement 4 per day (reduced my pain significantly, possibly due to antibacterial effect even against resistant strains where antibiotics have failed)
The products I use are all from the UK where I live so you may have to use a US alternative brand, but I will list them and maybe you can find the equivalents using google:
Movicol stool softener (sachet added to water and drunk)
Anusol HC haemorrhoid suppositories (inserted rectally with a small amount of lubricant like ky jelly)
In addition to this you may need an understanding dr like mine who is prepared to work with you and is flexible enough to think outside the box.
If my cpsi score ever goes and stays over 25 again despite treatment, I will be having the surgery in the UK. I know two highly experienced LRP surgeons here who will do it as a last resort. If you want the surgery call Dr K to discuss as you are US based.
Pain is the worst thing and no good Dr should deny you whatever pain control it takes to make life more bearable. Tramadol is my preferred choice as the side effects are generally less than other opiate based pain killers but pain control is similar.
By the way, it was haemorrhoid surgery that started my prostate problems. I have found plenty of sufferers on line that got prostatitis through haemorrhoid surgery.
Good luck and all the best.
Hi Patty it should look like this:
Please keep in mind that the members of this online social network have not examined, met, or even directly heard from your husband. Nobody can through this network provide your husband with any medical care or recommendation. Thus, nothing you're reading here constitutes an actual recommendation to your husband.
Please use the shared experiences only as a means for developing a knowledge base upon which your husband can build his questions to his doctors. If he is bleeding and he is afraid of the suppositories, then the action to be taken in response to this is something that he can choose to bring to the attention of his doctor(s).