New member with questions on PNE diagnosis

[REV800X]

Hello, I am a new member hoping to get some opinions from others with this condition… I’ll try to be brief, but also describe my condition and concerns with my diagnosis.
About a year ago I was diagnosed with PNE and a bacterial prostate infection by Dr. Antolak in Minnesota. I have suffered with this problem for about 25 years. Dr. Antolak diagnosed me using the nerve latency test, and I have also had 7 sets of PNPI injections with no reduction in pain. I am almost ready to schedule the PNE surgery, but am concerned that I have a continuing prostate issue rather than a nerve issue.
My history is: Began in 1985 shortly after contracting dysentery and having sexual contact in Pakistan. Symptoms then were severe pain in perineum area and cloudy mucous urine like a snow globe. Pain would radiate out both legs, usually one side at a time. Many doctor visits in the military with no diagnosis other than prostatitis or NGU. All doctors I saw felt it was a pelvic floor muscle and prostate issues. Eventually 400 mg ibuprofen 4 X a day with 10 mg of diazepam at night resolved the symptoms. Stayed symptom free from about 1995 to 2009 as long as I kept up with at least 1800 mg ibuprofen a day and the 10 mg of diazepam at night, and was careful about what I did such as not ride a bike, etc.
About 24 months ago I had some problems with bowel issues and pressure in that area, and went to my internal med doctor and also a surgeon. No major problems were identified. About 18 months ago I had to go to the ER with severe testicle pain. The ER doctor suspected epididymitis. Antibiotics were prescribed (4 courses), but pain still occurs and not resolved.
Currently I am back to having severe pain in prostate / perineum area. Currently it hurts to sit and feels “swollen” in the perineum area. The pain in the perineum is more like a sensation or feeling that is similar to a full bladder. I do not have pain in the buttock area though. Pain does not increase with sitting or lying down, but does get worse with exercise.
This flare up started about a year after I was put on Enbrel for my psoriatic arthritis. I am concerned that my problem is infection based since it flared up when on this immune suppressing drug, and is slightly better now that I am off it.
To try and control it I now take 800 mg ibuprofen 3 time a day, and 15 mg of diazepam each night. I also am concerned because all the drugs Dr. Antolak prescribed such as Flomax, amitriptylin, and others all made the pain worse. Each of the 7 sets of PNPI injections were successful based on the pin prick test, but the numbing agent did not numb the prostate area where the pain is. Does the PN serve that area and should have it been numb? I just finished 90 days of Cipro, and had at least 2 decent days out of 3. I’m not sure if it was the antibiotic or just the anti-inflammatory effect of the Cipro. If the pain is bad ejaculation makes it worse or if I’m not in much pain it gets worse about 2 out of 3 times.
I cannot have coffee, chocolate, beer, or spicy foods as these will make the pain instantly worse within about 10 minutes.
I am going to have a cystoscopy to check for IC in a few weeks, and also a prostate fluid culture done at the same time. I am hoping I can use that information to help me make a decision on the PNE surgery. Overall I feel Dr. Antolak is doing a great job and this if the first diagnosis I have had ever, but am also concerned with how this flared up when on Enbrel. I think I am afraid that this surgery may make it worse and I could not bear that. I’m sure I’m missing some details, but I appreciate anyone’s comments, suggestions, or similarities. Thanks.

[helenlegs 11]

Hi Rev800x
Welcome . You have had such a complex pain history, making a diagnosis all that more difficult so I understand your concerns. PN is often a diagnosis of exclusion and once you have the results of your coming tests back that should help.
Have you tried any physio? There is a list on the home page btw. There is also the option to get a 3T or MRN scan, although the scan is not conclusive proof there is an entrapment it may help to rule a problem out.
The only other thing is the type of surgery you are scheduled for? ? If any entrapment is lower, distal to the exit of alcocks canal it may not be able to be accessed by some surgical techniques (eg TG surgery, although surgeons seem to be coming up with new things)
Battery running low OOOps
Hopefully others will give good advice I'm sure they will
Helen

[REV800X]

Thanks Helen, I guess I'm not all that familiar with the surgery technique that Dr. Antolak uses. I've had this issue so long that I almost to the point of trying anything, but yet still cautious as I am afraid it could get worse. I did recently speak with Dr. Krongrad from the Krongrad Institute in Florida. After an hour long phone consult and review of my records he was suggesting his procedure of laproscopic removal of the prostate was the route I should go. But, that is even more drastic and all costs would be out of pocket when out of state so I am looking at that as a last resort.

I guess for me my main concerns are that the 7 sets of injections did not even numb or reduce the pain, that when I went on a immune suppressing drug (Enbrel) it got much worse, and that antibiotics do help. So, that makes me concerned that the problem is not all nerve entrapment related.

[larry91555]

Hi Rev800x: I can speak from my personal experiences on a few of the issues you raise: I too, was dx with pne by Dr. Antolak back when he was at the Mayo clinic (2001). Looking back now - 10 years ago - his dx was right on the money. Before I ended up at Mayo and Dr. Antolak I bounced from doctor to doctor for most of 2000. My local urologist suggested a cystoscopy with a bladder distention to check for IC. I'm not saying your experience will be the same as mine, but the cystoscopy with a bladder distention sent my pain level thru roof. I was dx with IC. My urologist and now the pain clinic where I ended up had me convinced that this was my problem - more tests including nerve blocks as the doctors looked for solutions. This period (2000) was also marked my entry into the world of narcotics - doctors not believing that IC could cause so much pain thought I was only interested in escalating my Oxycontin. Having nowhere else to go I decided to go to Mayo. Still at this time I knew nothing of pne, nothing of Dr. Antolak. At Mayo, the doctors did everything they could to rule out my prostate. Also at Mayo the doctors told me I did not have IC. I went thru 3 injections over a number of months. The results were enough to convince Dr. Antolak. At that time Mayo didn't do the nerve conduction test. If I wanted that test done I had to go to France. If surgery was needed Pr. Robert would do it. So it was off to France. Pr. Robert and Dr. Bensignor confirmed it was pne and surgery was suggested. At that time they told me it would be 3-5 years before I would see results - if the surgery was going to work. I wouldn't have believed that post surgery the pain would even be worse. But it was. I lived with this for almost 3-years returning 3 times for week long stays in Dr. Bensignor's pain clinic and 1 week in Dr. Bishop's clinic. The reason I went back to France was for Ketamine treatments that were not available in the U.S. The reason I am telling you all this is because my ending is a happy ending. 3-years post surgery I was cured - 100%. If you go for the surgery the best thing you can do is have a post surgery plan of action with doctors who are already on your side.

[REV800X]

Thanks larry91555,

I appreciate your insight and glad you have had a great outcome, but makes me nervous about the testing and future pain to get to the hopeful outcome.

Out of curiosity, did foods such as coffee bother you? I am unable to find out how foods can make this pain instantly worse other than that caffine impacts the nervous system... And then the whole Enbrel deal and how did that flare it up if its a nerve issue and not an infection issue - or maybe just a coincidence...

I'm just so frustrated with this whole deal and being in pain all the time. I do appreciate your and any others comments.

[carolynm]

I don't know much about the PNPI injections. I googled it and didn't come up with much. I would love to know what this is before I make any comment.

cm

[shawnmellis]

Hi Rev800 x it sounds like you have the same exact pain areas as mine, thighs, perineum, scrotal and not buttocks. These are more indicative to me that you may have what I have, which is an entrapment in your dorsal branch of the pudendal nerve. The best test is a pudendal nerve block but it must be done with a CAT scan guidance. Most sports medicine docs are familiar with PNE and can get this prescribed for you. The only two and probably thing I would do is get a Dr. Pollis MRI of your pelvis in NYC and then I would see Dr, Dellon. I have a lot of experience with this you can email me at shawnmellis@gmail.com if you need any help Only Dellon or Aszmann can do surgery on the dorsal branch or that area.

Shawn

[Violet M]

Rev, any chance you could get to Dr. Potter in NY or Dr. Fillipi in Vt for the 3T MRI of the pudendal nerve before going the surgery route? It might give you more confidence that you are doing the right thing. Also, as Helen mentioned, have you been evaluated by a pudendal neuralgia physical therapist yet? I can understand why you would be thinking twice about surgery if you did not even get short-term pain relief from the nerve blocks.

Violet

[REV800X]

Hi Carolynm, The seven sets of injections were in a series of 4 of which the last 2 were CT guided, and then 3 more after 4 months in a similar manner. Those were a steriod and anestetic to see if the nerve location is numbed and to see if the steroid helps with the inflamation. I think this is generally used as a diagnostic tool. For me I had the expected result, but no numbing in the perineum / prostate area where the pain is. So that left me wondering if the nerve entrapment is what is causing the constant pain.

Shawn - Did the PNPI injections have any impact on the pain location you have? If not, did you get the expected area of numbness so you knew they had injected in the right area/nerve? I will email you shortly.

Violet M - Thanks for the input. The 3 T MRI sounds like a good diagnostic method. I will have to consider that. I have not been to a PT specialist, but have done some research and have not located one near here. Living in Nothern Minn and the type of work I do its sometimes hard to coordinate the time to get to Minneapolis to see Dr. Antolak, let alone out the the East coast, but that might be a good excuse to get away for some much needed vacation and stress relief. I know I have to do something as the bad days much outnumber the just ok days and I have really had a hard time at work with this condition. There are times when I'm sitting in meetings that I'm almost bending my fingers to the breaking point to get them to hurt, as that is a pain I can somehow deal with better than this PNE pain that is so insane....

I think I have made up my mind that once I have the cystoscopy next month, and if that shows no issues I will just move ahead with the surgery and hope for the best - although I know it can get worse, but its so bad now I really don't have much to lose. It also sounds like Dr. Antolak is doing quite a few of these surgeries each month, and I want to be able to have it done here in Minn (and before he retires) where I have insurance coverage rather than have to pay out of pocket for the whole deal.... And, Dr. Antolak has told me he is very convinced that my tests and his review indicate nerve entrapment. I just have to quit overthinking this and move ahead....

I really appreciate all of everyones help and comments! Thanks!

[shawnmellis]

Hi Rev
Honestly, Only 1 or maybe 2 out of the 4 pudendal nerve blocks got close enough to my pudendal nerve to make the pudendal nerve get numb for 1 to 7 hours
and give me the diagnosis as pudendal neuralgia or pudendal nerve entrapment. the other 3 did not get close enough even with CAT scan guidance. This is unfortunately I'm finding out sometimes difficult to get close enough, within 1mm of the nerve in order for it to work. Ruling everything else out with MRIs, tests, and orthopedic doctors and maybe a PNMLT can also help to diagnose PNE or PN, but the PNMLT test is not always accurate always, which is why it is mostly clinical and ruling everything out and going based on your symptoms. Hope this helps.

Shawn