First entry

[Patty Stillman]

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.

[Nik]

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.

[Pawel Pekala]

Hello Patty, I was very sorry to read your husband has to suffer that much. I really hope he can get some improvement in his condition. I have read Nik's comment and his suggestion and I agree with his recommendations. I also has good experiences with Tramadol. On a bad day or when I can't avoid sitting or driving for a few hours I take 50mg of Tramadol. It almost eliminates all the pain for around 12-18 hours. I feel constipated after that to a certain degree but now I learnt to include more fiber in my diet and prune juice is indeed very helpful as well. I have taking AllicinMax for about 6 weeks now and I've got the feeling it is something which really helps me, started with 8-10 capsules a day but after 3-4 weeks reduced the dose to 4-5 a day and it is still good. I was around 22 on pain score but for the last several weeks has gone down to around 10-12. I haven't got big pain now, more like discomfort and mild pain from time to time. Of course I can't guarantee it is the effect of Allicin - it could just be the symptoms reduced on their own - but I think it is worth a while trying. All the best to you and your husband.

[Patty Stillman]

Thank you, guys, it's nice to meet both of you.  I picked up a garlic supplement on your recommendation the other day and he just started that. He had a rectal exam for blood in his stool the other day which caused a pretty serious flare up. There's no way he will let me near him with suppository right now.  This morning he's finally able to get out of bed and walk to the kitchen. He can't even get tramadol from his new GP.  He is going to see a new urologist on the 18th. We're hopeful this new one will try some of the other treatments than what's been offered so far.

[Nik]

Patty, make sure you get Allicin max specifically, as its unlike ordinary garlic supplements in that it has a patented process that gets stabilized Allicin into the bloodstream. I believe it is also sold in US as alligin, coming mixed with ginger root powder. If your local pharmacy does not stock it you can order on line. Tell your husband not to fear the suppository especially if lubricated with ky jelly. He may be pleasantly surprised at the relief it brings. I am appalled at your Dr refusing tramadol to a man in so much pain. I sometimes think the "first do no harm" ethic is used to extreme by some Dr's and may as well translate to "do nothing" or "better cover myself if its not indicated". It's a good thing many doctors (and a few surgeons!) are prepared to go the extra mile to help their patients. I wish I could help more. I would hate to live in a country without free healthcare with this disease and I really feel for you guys.

[Patty Stillman]

Oh, thanks for the heads up. They did not have the Allicin Max where I went and I just got a generic garlic supplement. I will look for the AM instead. Looks like I can get it on Amazon.  Is this it? http://www.amazon.com/Natrol-GarliPure-Maximum-Allicin-600mg-100/dp...

[Nik]

Hi Patty it should look like this:

 

http://www.alliginusa.com/http://www.alliginusa.com/

 

or this:

 

http://www.allimax.com/products.html

[Nik]

Some resellers are much more expensive than others so it pays to search around. I remember one guy in the states saying it was cheaper to order from the uk than from his own country. If you do that though obviously it will take a while to reach you.

[Arnon Krongrad, MD]

Patty,

 

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).

 

Thank you.

 

Arnon

[Patty Stillman]

Thank you, Dr. Krongrad. I assure you I understand that. We've also decided to get back on regular routine visits with his urologist, despite my husband's disappointment in him and will check with him about anything we try.  I figured a garlic supplement or any other recommended homeopathic remedy shouldn't be too harmful. But now that you remind me, we should go over it with his doctor, first. Also we thoroughly research all side-effects of any new meds and/or supplements before he takes it. Thanks again for the reminder!