The struggle is real

[Violet M]

Chase,

PGAD was caused by PNE. I had the TIR approach from Dr. Bautrant. It is described here: http://www.pudendalhope.info/node/23 I went to Bautrant in France because 11 years ago when I had surgery there weren't many US docs who were sparing the sacrotuberous ligament but Dr. Bautrant does. I had chronic sacroiliac ligament strain from weightlifting resulting in pelvic instability/misaglignment and I did not want to have the ST ligament cut and risk more instability. Now there are some docs in the US who use a modified transgluteal approach so if I had it to do now, I would probably stay in the US -- although, now that Dr. Hibner is no longer seeing men, there aren't as many choices for guys.

I had symptoms off and on for a year and a half before I was diagnosed and then surgery about 8 months after getting a diagnosis. I was diagnosed by a PT who specialized in pelvic pain and was knowledgeable about PNE. She pressed on the nerve and knew right away that it was pudendal neuralgia. My doctors at the time didn't have a clue.

From what I've heard, Dr. Jordan is very experienced at nerve blocks and has a good reputation but as with any invasive procedure such as nerve blocks or Botox injections, there are people who react badly to the medications used. I don't know if he does rectal exams to check the nerve.

I couldn't feel the pudendal nerve with a stretch. I'm not sure what you would feel if it's the genitofemoral nerve because I didn't experience that. You might find this article helpful.

http://www.ncbi.nlm.nih.gov/pubmed/11711938

Violet

[ChaseJordan92]

Violet - I just got back from my PT visit and the PT was trying to recreate the pain that I found with the Therwand. She was examining the pudendal nerve on both sides and the pain did not come from that area. It was located more at 1 a clock (she did not check the 1 a clock area). I am going to visit an orthopedic surgeon. I am still keeping my appointment with Dr. Jordan next month.

[Violet M]

So, yesterday you said it was at 3 o'clock. Did the pain move or did you change your mind on the positions of the clock?

I hope the ortho surgeon will be able to help you. I saw one who was not able to help me at all but hopefully yours will be more familiar with pelvic pain. It kind of depends on whether the physician has an interest and has studied up on this kind of pain.

Violet

[ChaseJordan92]

It is kind of hard to determine the clock when you have a foreign object in you. I strongly believe the pain is between 1 and 3 a clock. When she was pressing on the pudendal nerve on each side there was no feeling. I hope Jordan is able to assist. The pain between pudendal, prostatitis, interstitial cystitis etc is extremely similar. What I do know is that I found the pain with the wand. That means it's out there and I am on the right track.

[ChaseJordan92]

I am thinking about starting Elavil. Any recommendations (non-narcotic)?

[Violet M]

What I do know is that I found the pain with the wand. That means it's out there and I am on the right track.

That could also mean that you found a trigger point in the muscle which could be the primary cause of your pain or it could just be a symptom resulting from something else. For example, someone could have SI joint dysfunction that is causing their pelvic floor muscles to be tense. This could result in irritation of the pudendal nerve and lead to some of their other symptoms. Or, someone could have a lot of stress and anxiety that causes them to clench their pelvic floor muscles and the tense muscles could impinge on the pudendal nerve and cause symptoms of pudendal neuralgia. It really is a puzzle when trying to figure out the source of pelvic pain and it's good to get several opinions and exhaust all of the possibilities.

Violet

[ChaseJordan92]

Well last week I did physical therapy, acupuncture, and counseling. I have also been stretching more with a focus on pelvic region and nerve channels. I also started taking a ton of fish oil, b12 and claritin and my symptoms have really gone down. I would say my pain level was an 8 and now it's a 2. I am looking forward to my appointment with Sheldon Jordan on March 14th, my feeling is he might tell me its not my pudendal nerve but something else. Genitofemoral maybe? We will see.

[nyt]

ChaseJordan92, if you look at page 1 of this thread I gave some suggestions besides Elavil that are nonnarcotic pain options.

It can be difficult to determine the exact location when you have a foreign object section, been there done that, not fun!

I'm sure you are anxious to see Dr. Jordan. Hopefully, he will be able to help you figure this all out.

[rick]

Chase,

If you have considerable pain in your testicles and scrotum consider Epididymitis (inflammation of the epididymis) infection of the tightly coiled segment of spermatic duct that connects each testicle to its respective vas deferens. The infection of the epididymis can spread to each testicle and beyond, leading to testicle pain and acute epididymo-orchitis.

Epididymitis can also be accompanied by urethritis and/or prostatitis.

In my case the infection traveled to my penis, buttocks, rectum and inner thighs. I also had the symptoms of an ache throughout my penis, scrotal pain, a hernia, and hemorrhoids. I also have a neurologic bladder with insides scarred by calcium oxalate bladder stones. I have a history of calcium oxalate kidney stones going back 40 years and had a renal cell carcinoma treated by cryloblation about 3 years ago.

Medscape, go to http://emedicine.mediscape.com/article/436154-overview has an excellent article. Antibiotic treatment, in my case 1.Doxycycline 2.Levofloxacin was not effective. It was only when I started Ofloxacin (Floxin) that I started to recover and my pain levels went from 8 to 10 to a present level of 1 to 2. I take 400 mg of Ofloxacin 2 times a day. My research has shown that it can take a 90 day regimen to be effective and that is what has been I have a prescription for. I also take 600 mg of Neurontin twice daily and acetaminophen-cod #3 tab as needed. I have reduced my acetaminophen-cod #3 to one tab per day and plan to titrate off completely in the next few weeks as my pain continues to decrease. With exercise, work in my yard, cutting grass etc. my pain levels go up and I take one
acetaminophen-cod #3 if needed.

Looking back at my notes going back to 2002 it appears I have had episodes of Epididymitis waxing and waning since that then. It was when I fell in 2005 fracturing L5 and then landing on my left buttock that the PN type pain began to appear. In that an enlarged prostate, a history of constipation and a history of physical child abuse starting at age 2 that a perfect storm leading to chronic pain.

My point, you have to take charge of your interaction with the medical system we have to deal with. Research, research, research. I would have never been put on the high levels of medication that I have in the past unless I identified which could be therapeutic and pushed for them to be prescribed. I would have had my kidney removed but I pushed one of leading urologic surgeons in the country to consider freezing the renal cell carcinoma even though it was extremely close to my ureter. A young interventional radiologist took one look at my films and agreed to do the procedure. A week later after a 45 minute procedure the cancer was injected with chemicals through three small tubes placed through my back. The cancer now shows up on xray, cat scan, etc. as a small inert body.

I apologize for this long post but I need to tell you that people with PN type symptoms often have multiple medical problems in the same area. Often, only by researching, pushing gently but persistently to have your voice heard when interacting with a medical professional can you truly help yourself get well. I have read that the average MD makes his or her diagnoses within the first 5 minutes of your session with him. You don't want to go to that MD.

Go to medical schools and special hospitals. Like many I have been to the hospital for special surgery in NY to see Dr. Potter. But, since I live in the midwest, I have been to Northwestern University, Washington University School of Medicine, Loyola University, University of Chicago School of Medicine, and Rush Orthopedics in Chicago. And others, always with a set of carefully devised questions and copies of current research pertinent to my questions.

Take charge, don't take the first answers as gospel. In almost all cases avoid invasive procedures especially injections and surgery. If you look closely at the results of invasive procedures there are some successes. But the risks of being in the majority that don't get well and often end up much worse off are there to see if you look closely.

The human body is too complex and subject too extreme pain, complications if your body has to be subjected to the rigors of muscle and tendon invasion and cutting unless there is a true record of success from the procedure being performed on your body. It's your body. My mantra has always been nothing invasive
true, I did have to have a kidney cancer frozen but not cut upon. I did have to have a cysto to biopsy a possible cancer and remove bladder stones, and I did have to have kidney stones removed through a tube placed in my back.

But these are procedures, minimally invasive and with a proven track record. Today, after 11 years of chronic, often excruciating pain, my pain is mostly gone. Hopefully you can navigate and find your way. It takes a computer, a search engine and intense scrutiny on whatever you find out there.

Rick

[April]

Rick,

Many thanks for your thoughtful summary of your history. It all sounds really difficult, but it's wonderful to hear how you are so successfully managing it. Did you ever have a nerve block? Also, do you see or did the doctors see a clear connection between your L5 fracture and your pn?

Thanks,
April