Need help.. chronic pain for 2 years

[chronicpain]

Hello:

I have been suffering with perineal/testicular pain for about 2 years. I don't know if it is CPPS... but it sure sounds like it. I have talked with my GP about my problem (which I will outline below) but he does not have a clue. He just laughed off the possibility of chronic prostatitis / chronic pelvic pain syndrome (which didn't impress me). I would appreciate any help that you can give me.

Late August 2002 - went to emerg. with intense dull throbbing pain in testicular/perineal area. Had difficulty starting flow (which is not new). Also, over the years, I have had occasional burning at tip of penis, mild aches & pains in abdomen and occasional pain associated with ejaculation. When prostate was checked it seemed OK (not enlarged) and historically my PSA is within normal range. I do have a strong family history of prostate cancer (father, 6 uncles and grandfather). I do not have a frequency issue -- usually only once per night. It's probably the other extreme -- I have difficulty going. In addition, I have for years had difficulty with dribbling after urination. Physician said it was probably prostatitis and prescribed Septra for 8 weeks (I think -- it was the standard course).

October - Asked for a referral to a Urologist. Appointment was set for April, 2003.

October 2002 -- April 2003 - pain continues. Some weeks are better than others. Also, I note that in the morning there does not seem to be any noticeable pain until I get up and move around. Tried Saw Palmetto with minimal results.

April 2003 - saw urologist. Does a DRE and urine analysis. Everything negative. Feels it is Chronic Prostatitis. Placed on Septra. 5 days into the course I get severe reaction. Dizziness, tingling in hands, feet and along forehead and disassociated feeling (surreal). Feeling was so 'off' that I could not drive.

May 2003- neurological referral - orders CT scan and EMG - all negative. Also MRI which comes back normal. Neurological conditions continue until July/August in varying degrees. Some feel that perhaps is part reaction to sulpha and compounded by anxiety. I do suffer from anxiety/panic attacks.

Did not return to urologist for follow-up after 8 weeks. Difficult since ceased medication and dealing with neurological difficulties. Also difficult to get appointment.

September -- October 2003- perineal pain is ongoing - some days it is so unbearable.

Early-November 2003-- hospitalized for apparent kidney stones.

December 2003 -- throbbing pain seems to be increasing. Very intolerable. Went to emerg (several times) and they are not sure. Physician did a DRE and did not notice anything abnormal. I was constipated which is an ongoing issue.

February 2004 -- Referral to surgeon. He requested ultrasound of abdominal area and prostate. Was quite concerned about prostate and family history. Had prostate and stomach ultrasound in addition to colonoscopy and upper GI. All normal.

Present situation -- still the hot throbbing pain in the perineal area. It's a daily issue. I have been taking quercetin for 2 months (2 caplets/day @400mg/caplet), saw palmetto (160mg)for about 6 months, in addition to multivitamin, Vit E, and garlic. I have recently visited a registered naturopath and she has recommended increasing zink in addition to taking a few things for constipation. She tried acupuncture (including the perineal area) today but I have not noticed any improvement.

I have read up on any accredited quercetin product and will try that shortly. Is it available in Canada or only on-line? Otherwise, any suggestions/encouragemetns would be appreciated... I am at wit's end!


Al

[Rob1234]

Dear Chronic Pain,

I have been in pain for three years. Luckily for me the pain comes and goes in waves. But when you say you are at your wits end I know what you mean. I just wanted to write to say that you are not alone. Like you I have been to many health care professionals and tried many things. Nothing seems to work and the pain in my testicles comes and goes seemingly randomly. I am going to do two things:

1st I am going to a pyschciatrist who has exerience with the pain stress anxiety symptoms that are (or may be going on ) in my body.

2nd I am going to find and go to a person who has experience in the muscles of the pelvic area. Be it a therapist, occupational md, or other I don;t know yet. To me the occupational md might be best. The point is I want to find someone who has successfully treated epididymites before with muscle therapy.

3rd, IF that does not work I am going to try the next thing.

The point is I don't really know what to do either, but I am trying to develop a plan to address the issues. I thought I might get a notebook and start recording activiies diet, etc and compare that to symptoms.

This can be very frustrating and dibilitating and depressing and stressful, you are not alone. All I can say is I have no intention of giving up. There is a cause to my problem and I am going to find it . Good Luck to you- never give up and never surrender.

[MS]

Al,

Welcome to the Forum. Sorry that you had to find us, but glad that you did.

I have talked with my GP about my problem (which I will outline below) but he does not have a clue. He just laughed off the possibility of chronic prostatitis / chronic pelvic pain syndrome (which didn't impress me

It seems that many GP's will not diagnose chronic prostatitis / chronic pelvic pain syndrome in men. Your best bet is probably an open-minded urologist who understands chronic prostatitis / chronic pelvic pain syndrome as a multi-faceted condition.

). I do not have a frequency issue -- usually only once per night. It's probably the other extreme -- I have difficulty going. In addition, I have for years had difficulty with dribbling after urination.

Hesitancy may indicate an inability to relax the pelvic floor muscles. This can lead to a cycle of anxiety and more hesitancy. Have you read the posts on the book: "A Headache in the Pelvis"?

"¦. I do suffer from anxiety/panic attacks.

This can also perpetuate pelvic floor problems. Do a search on anxiety and relaxation.

Physician said it was probably prostatitis and prescribed Septra for 8 weeks

Septra (Sulfamethoxazole?) is an antibiotic, which is only effective (long-term) if you have an infection (and it sounds to me like that's not the problem). Do a search on antibiotics on this Forum.

Present situation -- still the hot throbbing pain in the perineal area. It's a daily issue. I have been taking quercetin for 2 months (2 caplets/day @400mg/caplet), saw palmetto (160mg)for about 6 months, in addition to multivitamin, Vit E, and garlic. I have recently visited a registered naturopath and she has recommended increasing zink in addition to taking a few things for constipation. She tried acupuncture (including the perineal area) today but I have not noticed any improvement.

You have described a "˜typical' case of CPPS. Read through the many posts of this Forum. Here is a very useful topic about a "non-prostatocentric" approach to chronic prostatitis / chronic pelvic pain syndrome that your (and many other) doctors may be unaware of:

viewtopic.php?t=941

[chronicpain]

Thank you Rob1234 and Matt. My apologies for not replying sooner. I was expecting a notification when a reply was posted but did not get one. I agree with both of your comments regarding how anxiety/stress perpetuates the cycle.

Rob, your thoughts about keeping a journal/log is an excellent idea. I noticed tonight that the pain seems to have lowered slightly while last night the throbbing was excruciating. I should try and keep track of the cycle.

I have set up another appointment with my GP and will discuss options for therapy. I see that many have had success with alpha blockers (Flomax) and muscle relaxation (Ativan). While I am not big on pharmacological solutions, when the pain is so bad... I need something.

I agree with you Matt that the GP route is probably not the best. As I noted earlier my GP just brushed off the notion that it could be CPPS. I will see if I can get a referal to Dr. Nickel at Queen's University. I live in northern Ontario and would be willing to make the treck. The Uro I see in Winnipeg has not been all that helpful.

I will read Pott's article and others posts. This site is extremely helpful... thanks for your replies.

Al

[scotsman]

Al - are you taking any pain medication?

Perhaps worth giving Ultram (tramadol) a shot - it's help a lot of sufferers on this forum and helps break the pain cycle.

Richard.