Suffering for 25 years and have questions...

[REV800X]

Hello,

I am posting my story to hopefully gain insight from others with similar conditions. I have lived with this for so long with no resolution that I am very frustrated.

Overall, I have lived now with this undiagnosed and unresolved chronic pain problem for more than 25 years, and this past year and a half has been pretty close to unbearable.

History:

• This condition of pain in the perineum/prostate area started about the time I had a severe case of dysentery as well as sexual contact in Pakistan 1986.
• I did however have a short duration of this same pain after sexual contact in 1982. I did see a doctor in the USN, but feel he missed something such as a STD. No treatment at that time.
• For approximately 8 years after the 1986 reoccurrence my urine was cloudy, and if in a specimen jar it was like a snow globe but would eventually settle out with white flakes on the bottom and urine on top.
• Many doctor visits in the military with no diagnosis other than prostatitis or NGU. Treated with short term antibiotics with short relief but pain would return.
• Went to my clinic in early 90’s for many visits with Urology. Eventually ibuprofen with diazepam at night relieved some symptoms. Stayed functional as long as I kept up with at least 2400 mg to 3200 mg of ibuprofen a day and the 15 mg of diazepam at night.
• For the past 15 years I have been able to function with this, with the exception of when I couldn’t take ibuprofen before surgery, and once after a prostate exam.
• This current 2 year severe flare up started shortly after I went on immunosuppressant drugs for my psoriatic arthritis.
• It began as severe testicle pain, and went in to ER and doctor did a prostate exam. He pressed really hard on the prostate and after it felt hot and swollen. That was the start of the flare up.
• Off Enbrel now as it appears after two tries that the immune suppressing drug causes the pain to increase greatly.
• Did have a bacterial prostate infection diagnosed by Dr. Antolak 18 months ago, but no culture done. Did 4 months or so of Clindomyacin.
• After seven good (good defined by pin prick test) PNPI injections with Dr. Antolak, the pain I feel hasn’t been relieved (isn’t numb) and is located centrally in the perineum, just behind the testicles, and inward toward the bladder or prostate area.
• Have been prescribed many muscle relaxing drugs such as Flomax, etc, but all the drugs made the pain much worse.
• The constant nerve type pain is very close to what a full bladder feels like; only lower in the pelvic floor, even when bladder is empty. Feels like it is in the area of the muscles that control ejaculation or releasing bladder.
• The pain radiates throughout the pelvic floor muscles, and seems to flare up with any activity such as basketball or walking, or eating spicy foods, chocolate, or caffeine.
• Pain increases after ejaculation. But the pain makes me want to ejaculate even though 2 out of 3 times it will get worse.
• Occasional mucus/prostate fluid draining out after urination / bowel movement.
• Some radiating pain in testicles and down inside of legs.
• Entire area feels hot and swollen.

I currently have two options for surgery. One with Dr. Antolak to perform bilateral PN surgery, as he has diagnosed me with PNE, by the nerve latency test and the temperature test. (don't recall the exact names of the tests)

And, Dr. Krongrad, from the Krongrad Institute in Florida, has reviewed my medical history and spoke with me on the phone for about an hour. He recommends a complete prostate removal laparoscopically.

I have chosen to not move ahead with either surgery at this point due to being unsure that either option is the correct option.

Lately, the pain really flared up about 4 months ago, and I went on 90 days of Cipro, and have had a huge reduction in pain. This helps me to believe the pain is infection related, but considering how many antibiotics I have been on over the last 25 years I am fearful the pain reduction is temporary. I also understand that Cipro can have an anti inflammatory effect so not sure. I am off of Cipro now and the pain is back strong as ever within several weeks of going off of the Cipro.

In several weeks I have a cystoscopy to test for IC and also to do a prostate fluid culture. I have never had these or any other tests done other than listed above with Dr Antolak, So I am glad about this.

Overall I can’t continue to live with this pain. I am barely making do in life with family activities and work functions. I am employed in a professional position, and find it very difficult to do a good job when in constant pain.

So that’s my story in a quick nutshell. I'm sure I have missed some issues, but can add later if they come up...

I very much appreciate comments.

Thanks!

[robertpagen]

Hey Rev,

I am almost your age and I have wrestled with this condition as long as you have, so I empathise with your frustration.

I understand the desperation which might push you to take a drastic measure like surgery. Still you are young to have such drastic surgeries. If you have USN coverage you should get a completely different evaluation, a second opinion.
Have you really done EVERYTHING which is possible to improve the quality of life so that you might be liveable without it. I note that you live in a cold climate. Do you keep the area and your lower body including feet warm. Do you completely without exception avoid, caffeine and alcohol? Have you engaged some type of massage, even if external to gauge its effects?

There is a lot to this. We will talk more,

Be well,

Robert

[webslave]

Rev800X, you have visited some of the worst people in this area and I fear you were seriously misled by them.

Krongrad
viewtopic.php?f=45&t=6037

Antolak and PNE surgery
viewtopic.php?f=36&t=5767

[webslave]

To answer some of the other points:

my urine was cloudy, and if in a specimen jar it was like a snow globe but would eventually settle out with white flakes on the bottom and urine on top.

Epithelial cells from bladder inflammation (IC), or protein, or seminal fluid.

Treated with short term antibiotics with short relief but pain would return.

Typical CP/CPPS.

This current 2 year severe flare up started shortly after I went on immunosuppressant drugs for my psoriatic arthritis.

I too flared with immunosuppressants (although, strangely, Celestamine, a mixture of antihistamine (loratadine) and a steroid (betamethasone), did help me for a short period).

It began as severe testicle pain, and went in to ER and doctor did a prostate exam. He pressed really hard on the prostate and after it felt hot and swollen. That was the start of the flare up.

You need to have your pelvic floor examined by someone who knows about trigger points.

Did have a bacterial prostate infection diagnosed by Dr. Antolak 18 months ago, but no culture done.

I strongly advise you not to see Antolak again.

I currently have two options for surgery. One with Dr. Antolak to perform bilateral PN surgery, as he has diagnosed me with PNE, by the nerve latency test and the temperature test. (don't recall the exact names of the tests)

A thousand times "No".

And, Dr. Krongrad, from the Krongrad Institute in Florida, has reviewed my medical history and spoke with me on the phone for about an hour. He recommends a complete prostate removal laparoscopically.

Oy. Run.

I have chosen to not move ahead with either surgery at this point due to being unsure that either option is the correct option.

Your instincts serve you well. Trust them.

I also understand that Cipro can have an anti inflammatory effect so not sure.

Definitely. https://ucpps.men/antibiotics-are-anti-inflammatory-agents

In several weeks I have a cystoscopy to test for IC and also to do a prostate fluid culture. I have never had these or any other tests done other than listed above with Dr Antolak, So I am glad about this.

Who is your current urologist?

[REV800X]

Thanks everyone for the quick responses. I'll try to add a few more symptoms that I thought of this evening and then try to answer some questions asked.

Currently the pain can travel from perineum to end of penis, up to bladder, back to rectum, or the painful testicle and down the inside of the left leg. It seems to always to radiate to these area's, and then really settle in the perineum area.

When the pain is bad, ejaculation is very weak - almost like the muscles don't want to work. Feels weird. Then 2 out 3 times that makes the pain worse, and 1 out of 3 it almost makes it go away for a day. By going away I mean down to a 2 or so on the pain scale.

Sometimes I can be at a 2 for pain, then sit down for my sons basketball practice and in 10 minutes the pain is a 10. But I can sit a day at work and never have it change also. Or, it can be at a 10, and then it will drop down to almost nothing in minutes.

Sometimes I will wake up several times in the night to urinate, with really nothing there, but really feels like it. Kind of like a full bladder feeling at the end of my penis. When that happens I know it will be a bad day or two coming up.

When the pain is bad, stress really makes it worse. If I'm hurting and our son bounce a basketball on our hardwood floors, it makes the pain soar. I do feel stress has a big factor in this.

About 5 years ago I hurt my back bad, and a PT had me squeeze a ball between my legs. I heard a "snap", and she said it was some joint in my pelvis moving. I was in pain for about 2 weeks, but that was during a time period when I was controlling it with the ibuprofen and diazepam. It resolved in about 4 weeks and I was OK if I was careful.

During my good years I could eat most anything but chocolate, drink coffee or beer, and as long as I didn't ride a bike I could run, work out, etc. That is as long as I kept up my ibuprofen and diazapam. Life was good.

Now that I have had this flare up, I realize how important it is to feel good. I think I took that for granted as I felt OK with the pills... Not anymore. Thinking about my history I really feel I could have several issues, probably the biggest is pelvic floor muscle problems, then maybe prostate problems but my culture will answer that shortly, and maybe some nerve problems due to the years of constant pain. I have read so much I really just don't know anymore and am very confused. I wish I had worked on resolving this when I felt OK, as it is harder now when I am in pain 8 out of every 10 days.

As a side note I do have SI joint problems pretty bad. I am diagnosed with a problem with those but don't recall the name. Not sure if that plays a part in this...

For the questions:

Robert: Living in Northern MN it is hard to stay warm, but we do pretty good up here. I work inside for the most part and we dress as needed. I have not been to any PT that works with trigger point therapy, and will research that. I do not know how to perform any type of self massage. But, my sister and her husband are both PT's, and maybe they can point me to someone in the state that does this evaluation and work. It seems like it might be a bit embarrassing (no pun), but I'm in so much pain I don't really care anymore... Also I am retired USN, but 6 active and 15 reserve, so no insurance coverage yet, but I do have good coverage from my employer.

Webslave: You have provided a huge amount of info for me. I appreciate it. I will try to read more and digest tomorrow. As far as my Urologist - I go to Dr. Martin Grune at SMDC in Duluth MN. SMDC does not do any prostate cultures in house so they send all patients to Dr. Antolak in MPLS. He is doing my test for IC and prostate culture. Once I have those results I will take a step back and try to get a second opnion. I did have a referral to Mayo, but they won't see me as they say they don't do this type of work anymore - don't quite understand that. They recommended Dr. Shoskes at Cleveland Clinic. I did check my insurance and I do have coverage there with a referral which should be no problem - or maybe there is someone else I should see.

Well, thanks again to all and I very much appreciate everyone's help and advice. Thanks!

Dave

[webslave]

Currently the pain can travel from perineum to end of penis, up to bladder, back to rectum, or the painful testicle and down the inside of the left leg. It seems to always to radiate to these area's, and then really settle in the perineum area.

Pain that migrates around the pelvis and upper thighs is normal for CPPS.

When the pain is bad, ejaculation is very weak - almost like the muscles don't want to work. Feels weird. Then 2 out 3 times that makes the pain worse, and 1 out of 3 it almost makes it go away for a day. By going away I mean down to a 2 or so on the pain scale.

Again, that sounds typical, as do the rest of the symptoms you mentioned. Muscles fibres that are chronically tense actually become hyper-irritable and weak. You're one of us. You can throw away the PNE garbage and any thought of operating.

When the pain is bad, stress really makes it worse. If I'm hurting and our son bounce a basketball on our hardwood floors, it makes the pain soar. I do feel stress has a big factor in this.

Absolutely correct!

About 5 years ago I hurt my back bad, and a PT had me squeeze a ball between my legs. I heard a "snap", and she said it was some joint in my pelvis moving. I was in pain for about 2 weeks, but that was during a time period when I was controlling it with the ibuprofen and diazepam. It resolved in about 4 weeks and I was OK if I was careful.

That probably didn't help.

Now that I have had this flare up, I realize how important it is to feel good. I think I took that for granted as I felt OK with the pills... Not anymore. Thinking about my history I really feel I could have several issues, probably the biggest is pelvic floor muscle problems, then maybe prostate problems but my culture will answer that shortly, and maybe some nerve problems due to the years of constant pain. I have read so much I really just don't know anymore and am very confused. I wish I had worked on resolving this when I felt OK, as it is harder now when I am in pain 8 out of every 10 days.

Would you say that you have had more stress lately? Are you sitting tensely for much of the day?

SMDC does not do any prostate cultures in house so they send all patients to Dr. Antolak in MPLS.

It's disturbing that a health provider is routinely referring pelvic pain patients to a MD who has fringe theories, like Antolak. The PNE theory (and attendant surgery) really is not widely accepted in the medical field. Only a handful of doctors around the world promote it. It is, however, very lucrative for the doctors involved!

He is doing my test for IC and prostate culture. Once I have those results I will take a step back and try to get a second opinion.

Hmm, I'd leave immediately. Antolak, like other doctors who push a particular barrow, tends to find the results he wants to find. You should try to see a uro who is completely non-aligned with any theory or treatment. But in the end, you are most probably going to find that uros are not useful to you.

They recommended Dr. Shoskes at Cleveland Clinic. I did check my insurance and I do have coverage there with a referral which should be no problem - or maybe there is someone else I should see.

Shoskes in one of the best in the world in the uro field for this condition. If there is a choice between Antolak and Shoskes, then it's a no-brainer.

[REV800X]

Thanks webslave.

I'm stuck with Dr. Antolak doing my test for IC and prostate culture, so will move ahead with that as it is testing that needs to get done and I have never had. Once that is done I will work towards getting a referral to Dr. Shoskes which I feel I can make happen.

Do you and others feel I am on the right track with this plan?

As a sidenote - have others with chronic prostatitis / chronic pelvic pain syndrome had relief with long term use of ibuprofen? I know during the 15 years or so that I was doing ok that if I missed a dose I was hurting. Is the thought that ibruprofen reduces inflamation from the muscles being tensed up? Or am I not understanding how that worked? I'm just curious why that worked.

Thanks again for all the help provided here!

[tweezerr]

Welcome aboard my friend. I'm glad you found this site, as it will be your guide to recovery. You have a classic case of CPPS. Like webslave said, you have been seriously misled by many doctors and need to stop going to ALL of them ASAP. The answer and solution to your condition lies on this forum and also in the book "A Headache in the Pelvis". Dr. Wise and others have cracked the code on this nasty nasty condition, you just have to educate yourself. I was literally suicidal when I first came down with it.

As far as Ibuprofen, I don't get any relief from that stuff. The muscles in this condition are too tense and constricted for that to help. Now valium on the other hand, I get almost 100% relief.....too bad its got NASTY withdrawal side effects after taking it for too long.

Good luck!! We all feel your pain...literally:)

[REV800X]

Thanks tweezerr, I know ibuprofen and valium both are about the only drugs that help me and have since the early 90's. If I cut either out the pain really goes up.

The strange thing is, is that over the past years I have been prescribed drugs that others on the forum indicate have worked, such as Flomax, amitriptyilne, many others, and for me when used made the pain much worse almost instantly.. So I haven't had much luck with smooth muscle relaxers, etc...

[tweezerr]

I've combed these forums and the only drug that seems to work for the majority are the benzodiazepines, which is what Valium is. From my reading amitriptyline and Flomax only work for some. I've tried amitriptyline for a few days with no success but I've heard you need to take for a few weeks to see results. Also, Dr. Wise doesn't think amitriptyline works well at all.

From my experience, drugs are not the answer. I took Valium for like 3 months and all it did was prolong the condition. Once I stopped taking it I went back to my habits that caused me the pain in the first place.

[REV800X]

Thanks - Have you heard of any problems with using Miralax? I have had a constipation problem my entire life, and a bit before this last flare up I started using this. I do feel there is some sort of correlation between the pain and bowel movements, but not sure if the Miralax is playing a part in it... It does seem that if I'm constipated, the pain is reduced, and if my bowels are messed up the pain is worse...

[webslave]

Miralax (polyethylene glycol) is a laxative solution that increases the amount of water in the intestinal tract to stimulate bowel movements. If you have IBS, you are supposed to tell your MD so that the dose can be adjusted. Miralax can have some serious side effects. If you suspect it's causing your flare, stop using it. Trust your intuition; often our intuition is our best advisor.

[REV800X]

Well, I had my cystoscopy last Wednesday, (not a lot of fun....) and found out I do have IC... Will get the results from the prostate fluid culture in a few weeks. I haven't researched IC much, but will do some reading. Does anyone here have IC? Does the pain related to IC have similarities to pelvic pain as previously discussed? I know Dr. Antolak still recomends his PN surgery for IC, but I'm not very inclined for any surgery at this point. As always any input is appreciated. Thanks.

[REV800X]

As I mentioned above, are many here on this forum familiar with IC or have it? Thanks.

[webslave]

IC is often difficult to distinguish from chronic prostatitis, and is almost certainly similar in etiology. Many members here have IC. Read the Research forum for material on IC (also known as PBS and BPS).