My Saga, I need helpful suggestions...

Male pelvic pain, prostatitis, IC
snowbro
New Member
New Member
Posts: 10
Joined: Tue Dec 18, 2012 10:26 pm

My Saga, I need helpful suggestions...

Post by snowbro »

I'm currently a 35 year old male physician practising in southeast Florida, married to a beautiful wife for the past several months now. Here is my story.

My saga with chronic pelvic pain began in January 2012 when I first noticed some diffuse right lower quadrant pain and a bulge in my right groin typical of a right inguinal hernia. I had been going to the gym lifting weights, and had even done some yoga sessions and gradually the hernia worsened. I decided to have an open right inguinal repair for it on 4/12/2012. Of note, I did have a mesh repair. I recovered over the next week, and gradually the post-op pain subsided completely within a month.

About 2 months after my surgery in June 2012, I developed an entirely different sensation, like a burning within my urethra, kinda of a constant raw burn. I imagined this is what a UTI would feel like, however I had never had a UTI before in my life. There was no dysuria however, and urinating actually relieved the pain temporarily. Unlike my hernia pain (which was visceral and crampy), this was completely centrally located, and not right-sided. Also, the pain worsened towards the end of a work day (where I often sit a lot). I also developed a short period of left testicular tenderness. Naturally, my first thought was an infection, although I was at the time with a stable girlfriend. Sex did not seem to be affected whatsoever. I went to my primary care physician (PCP) who prescribed a course of antibiotics, Azithromycin pills and Rocephin injection. All tests, including full STD panel were normal. I felt better initially, then 2 weeks later, the same feeling returned. My PCP re-prescribed the same medications, however this time, no change at all.

Around July 2012, I saw a urologist at my hospital, who said this was classic prostatitis. I looked up the symptoms and then realized, that yes, the pain did not really come from the urethra, it was deeper and I could feel it by pressing on the perineum (towards the prostate) and that the origin did seem deeper within me. Satisfied, I started his recommended course of Ciprofloxacin 500 mg bid x 6 weeks. No change in my symptoms, not one iota. He then switched to a combo of Levaquin 750 mg daily and Doxycycline 100 mg bid for another 6 weeks. No change. We also tried Septra DS. No change.

By this time, I was starting to get desperate, and I began having catastrophic thoughts due to the pain. I am used to chronic migraines, but there is something about chronic pelvic pain which is SO MUCH WORSE, I cannot fully explain it. Anyways, I felt depressed for the first time in my life.

I started reading about chronic prostatitis all over the internet and decided I needed to see another urologist. This second urologist said I was so young, we needed to rule out an infectious cause first. I was referred to a top infectious disease specialist who did every test known to man, including a prostatic massage and cultures, blood cultures, etc. EVERYTHING was normal. He suggested a transrectal ultrasound (TRUS) and this showed a normal prostate, however there were calcifications bilaterally up to 4 mm in size. He suggested perhaps the calcifications served as a nidus for a chronic infection, or chronic prostatitis. He then put me on Azithromycin for 6 weeks. Again, no improvement. I was taking the occasional Lortab in the evenings to combat the pain, which DID help, however I did not like the nausea associated with opiates. I tried anti-inflammatories like ibuprofen and naproxen, which barely did anything to dull the pain.

I heard about a physician in NYC (Dr. Toth) who performed intra-prostatic injections of multiple antibiotics directly into the prostate and seminal vesicles, to combat even stubborn infections. Apparently the dose of antibiotics is 5000x what you would obtain if taking the antibiotics orally. I wrote down the list here: gentamicin, clindamycin, metronidazole, moxifloxacin, diflucan, azithromycin and medrol. This would kill ANY infection. I was fixated on treating THE CAUSE of the pain and was not satisfied just dealing with the symptoms.

So in December 2012, I made a few trips to NYC and did 3 injections over a 1 week period. There was no improvement, in fact, perhaps even a slight exacerbation of my symptoms. Clearly, CLEARLY, this was not an infectious chronic prostatitis, putting me in Category 3B of the NIH's classification of chronic prostatitis (Abacterial Chronic Prostatitis / Chronic Pelvic Pain Syndrome). I guess this is the grab bag diagnosis more than 90% of patients get lumped in to. I at least was able to close that chapter of my life, knowing with certainty this was NOT infectious. I was also now pretty sure that my prostate was an innocent victim in this whole ordeal. Around this time, I met my current wife, we started dating briefly on/off however we did not become serious until about April 2013. Sex did not seem to improve or worsen my symptoms at least.

I started reading Headache in the Pelvis in January 2013, and realized perhaps my pain was chronic pelvic floor muscle tension related. It kind of made sense. The pain would improve with a glass of red wine, or Valium 5 mg (both muscle relaxers). I had tried for the heck of it a Medrol Dose pack (steroids to reduce inflammation), and this didn't help at all. So inflammation was also ruled out.

In January 2013 I saw an anesthesiologist pain specialist who recommended a caudal nerve block to "RESET" my system so to speak. This cost me quite a bit (despite insurance), and only exacerbated my symptoms once again. This specialist then recommended pelvic muscle floor therapy with a physiotherapist specialized in pelvic floor pain.

Due to my work, and her busy schedule, I could only see the therapist once every 2 weeks in the evenings. She evaluated me and determined I was very tight internally, and recommended external and internal trigger point work as well as pelvic floor stretches. I went to many sessions, and did her exercises daily, however to be honest, no real improvement was seen. I was even doing a little yoga. I did another full medical and STD checkup in May 2013, and of course, all normal.

By the summer of 2013, I was losing hope of anything working, I saw another pain specialist, and he put me on Tramadol. This would ease up the pain, at least temporarily. He then put me on the long-acting slow release Tramadol 200 mg daily with breakthrough, eventually increasing to Tramadol 300 mg daily with breakthroughs. I would also take Valium 5 mg once or twice a day. This was actually working well for awhile.

Anyways, I recently had some stressful events in my life, and it appears it triggered a nice flare up of my symptoms. The pain is constant now, ranging from 6/10 to 9/10. The stressful events are over, however the pain is not abating whatsoever. Tramadol does NOTHING for the pain now. I weaned myself off the Tramadol completely and decided to see an acupuncturist this week. No change after one session, however I have several more sessions lined up. I have a hard time sleeping because the pain does not go away, and I even wake up with pain. I notice there is tenderness in the area I sit on, the bulbospongiosus muscle mid-line (medial raphe). I have a special memory foam pillow at work, with an open central area, again, not much help. I also feel there is more urinary urgency than before. I get some mild very temporary relief by using menthol capsaicin cream over my perineal / genital region.

I am thinking of seeing another urologist and perhaps doing another medical work-up, although I can already predict finding nothing. Perhaps an MRI-pelvis, or cystoscopy, two studies I have never had done yet? Should I see a chiropractor? Should I bother continuing with the acupuncture? Should I try another pelvic floor PT, with more frequent visits?

I am trying to remain calm, still take a Valium 5 mg in the mornings. My wife is being supportive. I wake up and try to say positive thoughts to put myself on a good track, but man, it is HARD when there is physical pain CONSTANTLY emanating from your pelvis! The depression and catastrophic thoughts have returned despite my understanding that this just makes it worse.

Any suggestions?
Age: 34| Onset Age: 33| Symptoms: waxing and waning pelvic, perineal, and urethral pain, occasional urgency| Helped By: massage/distraction/exercise/sex | Worsened By: stress/sitting| Other comments: I am a physician trying to solve this problem in a systematic fashion
snowbro
New Member
New Member
Posts: 10
Joined: Tue Dec 18, 2012 10:26 pm

Re: My Saga, I need helpful suggestions...

Post by snowbro »

I forgot to add, I have tried any accredited quercetin product off/on for 2 months at a time since January 2013, with no improvement.
Age: 34| Onset Age: 33| Symptoms: waxing and waning pelvic, perineal, and urethral pain, occasional urgency| Helped By: massage/distraction/exercise/sex | Worsened By: stress/sitting| Other comments: I am a physician trying to solve this problem in a systematic fashion
User avatar
webslave
Maintenance
Maintenance
Posts: 11429
Joined: Wed Oct 30, 2002 3:18 pm
Location: Please give your location so we can help better
Contact:

Re: My Saga, I need helpful suggestions...

Post by webslave »

You've run the gamut of treatments, without much help. Your history echoes so many of us here, including myself. Comments below.
snowbro wrote:I'm currently a 35 year old
That's close to the peak age for CPPS onset.
urinating actually relieved the pain temporarily
Indicates some neurological radiation to the bladder lining, as in interstitial cystitis (IC). IC is, in my opinion and in the view of many researchers, a subset of CPPS.
the pain worsened towards the end of a work day (where I often sit a lot)
Classic CPPS.
I also developed a short period of left testicular tenderness
Classic CPPS.
there were calcifications bilaterally up to 4 mm in size
Non-specific finding common to many men who have no pain symptoms.
I heard about a physician in NYC (Dr. Toth) .... There was no improvement, in fact, perhaps even a slight exacerbation of my symptoms.
Toth: viewtopic.php?f=45&t=5265
In January 2013 I saw an anesthesiologist pain specialist who recommended a caudal nerve block to "RESET" my system so to speak.
Oy! Hammer to the fly. :facepalm:
She evaluated me and determined I was very tight internally, and recommended external and internal trigger point work as well as pelvic floor stretches. I went to many sessions, and did her exercises daily, however to be honest, no real improvement was seen.
Again, that's a common finding when using improperly trained female therapists. They not only don't really know what they are doing, but often have weak, short fingers that are not up to the task. Now you may have had a well trained therapist who did know what she was doing, but there are many more out there who are stumbling around in the dark than who have any real skills. Call Dr Wise and ask for the nearest good therapist to your location, if there is one. (866) 874-2225 • (707) 874-2225
Anyways, I recently had some stressful events in my life, and it appears it triggered a nice flare up of my symptoms.
Classic.
I am thinking of seeing another urologist and perhaps doing another medical work-up
Waste of time and money. :sad2:
Perhaps an MRI-pelvis, or cystoscopy, two studies I have never had done yet?


Cystoscopy has some diagnostic value inasmuch as it can tell you if you have an IC dimension, but the benefit of knowing that is IMO small.
Should I see a chiropractor?
No.
Should I bother continuing with the acupuncture?
There are a few mild successes with this form of treatment, but you'd be better off directing your funds elsewhere.
Should I try another pelvic floor PT, with more frequent visits?
Yes, but choose the RIGHT therapist. That's the key thing.
HAS THIS SITE HELPED YOU?
Say Thanks by donating. Keep the
Forum alive on the Internet!
PayPal link at end of page ↓

Contact me at support at ucpps.men
Caedar
Old Hand
Old Hand
Posts: 319
Joined: Mon May 20, 2013 9:08 pm
Location: Massachusetts, USA

Re: My Saga, I need helpful suggestions...

Post by Caedar »

snowbro wrote:I'm currently a 35 year old male physician practising in southeast Florida, married to a beautiful wife for the past several months now. Here is my story.

My saga with chronic pelvic pain began in January 2012 when I first noticed some diffuse right lower quadrant pain and a bulge in my right groin typical of a right inguinal hernia. I had been going to the gym lifting weights, and had even done some yoga sessions and gradually the hernia worsened. I decided to have an open right inguinal repair for it on 4/12/2012. Of note, I did have a mesh repair. I recovered over the next week, and gradually the post-op pain subsided completely within a month.

About 2 months after my surgery in June 2012, I developed an entirely different sensation, like a burning within my urethra, kinda of a constant raw burn.
Keep the inguinal hernia and surgery in mind. Your ilioinguinal nerve might be irritated by scar issue or by muscle tension/trigger points in the area.
I imagined this is what a UTI would feel like, however I had never had a UTI before in my life. There was no dysuria however, and urinating actually relieved the pain temporarily.
Pain relief on urination could be related to interstitial cystitis, as webslave said.
Unlike my hernia pain (which was visceral and crampy), this was completely centrally located, and not right-sided. Also, the pain worsened towards the end of a work day (where I often sit a lot).

I also developed a short period of left testicular tenderness.

By this time, I was starting to get desperate, and I began having catastrophic thoughts due to the pain. I am used to chronic migraines, but there is something about chronic pelvic pain which is SO MUCH WORSE, I cannot fully explain it. Anyways, I felt depressed for the first time in my life.
So to be clear, your only symptom is urethral burning that eases on urination? Anything else?
Clearly, CLEARLY, this was not an infectious chronic prostatitis, putting me in Category 3B of the NIH's classification of chronic prostatitis (Abacterial Chronic Prostatitis / Chronic Pelvic Pain Syndrome). I guess this is the grab bag diagnosis more than 90% of patients get lumped in to. I at least was able to close that chapter of my life, knowing with certainty this was NOT infectious. I was also now pretty sure that my prostate was an innocent victim in this whole ordeal. Around this time, I met my current wife, we started dating briefly on/off however we did not become serious until about April 2013. Sex did not seem to improve or worsen my symptoms at least.
It sounds like you are right to believe that this does not have an infectious cause. When you say sex does not improve/worsen symptoms, do you mean during sex or on ejaculation, or both?
I started reading Headache in the Pelvis in January 2013, and realized perhaps my pain was chronic pelvic floor muscle tension related. It kind of made sense. The pain would improve with a glass of red wine, or Valium 5 mg (both muscle relaxers). I had tried for the heck of it a Medrol Dose pack (steroids to reduce inflammation), and this didn't help at all. So inflammation was also ruled out.
"Ruling inflammation out" is kind of a broad statement. Interstitial cystitis, which it sounds like you might have, certainly has an inflammation component, but the medications to treat that type of inflammation are usually antihistamines. Pelvic pain can be complicated and usually has a number of underlying factors. Headache in the Pelvic focuses on pelvic floor dysfunction, which is one cause and usually a common component of CPPS (most doctors specializing in pelvic pain say 90%~ of CPPS patients have pelvic floor dysfunction).
In January 2013 I saw an anesthesiologist pain specialist who recommended a caudal nerve block to "RESET" my system so to speak. This cost me quite a bit (despite insurance), and only exacerbated my symptoms once again. This specialist then recommended pelvic muscle floor therapy with a physiotherapist specialized in pelvic floor pain.

Due to my work, and her busy schedule, I could only see the therapist once every 2 weeks in the evenings. She evaluated me and determined I was very tight internally, and recommended external and internal trigger point work as well as pelvic floor stretches. I went to many sessions, and did her exercises daily, however to be honest, no real improvement was seen. I was even doing a little yoga. I did another full medical and STD checkup in May 2013, and of course, all normal.
Was this physical therapist trained in pelvic floor disorders and pain?
By the summer of 2013, I was losing hope of anything working, I saw another pain specialist, and he put me on Tramadol. This would ease up the pain, at least temporarily. He then put me on the long-acting slow release Tramadol 200 mg daily with breakthrough, eventually increasing to Tramadol 300 mg daily with breakthroughs. I would also take Valium 5 mg once or twice a day. This was actually working well for awhile.

Anyways, I recently had some stressful events in my life, and it appears it triggered a nice flare up of my symptoms. The pain is constant now, ranging from 6/10 to 9/10. The stressful events are over, however the pain is not abating whatsoever. Tramadol does NOTHING for the pain now. I weaned myself off the Tramadol completely and decided to see an acupuncturist this week. No change after one session, however I have several more sessions lined up. I have a hard time sleeping because the pain does not go away, and I even wake up with pain. I notice there is tenderness in the area I sit on, the bulbospongiosus muscle mid-line (medial raphe). I have a special memory foam pillow at work, with an open central area, again, not much help. I also feel there is more urinary urgency than before. I get some mild very temporary relief by using menthol capsaicin cream over my perineal / genital region.
I too had serious bulbospongiosus trigger points on the midline, which caused urethral burning that eased on urination as well as ejaculatory pain. When I started being treated for IC (with Atarax; I am not on Elavil yet), that symptom as well as the trigger point vanished.
I am thinking of seeing another urologist and perhaps doing another medical work-up, although I can already predict finding nothing. Perhaps an MRI-pelvis, or cystoscopy, two studies I have never had done yet? Should I see a chiropractor? Should I bother continuing with the acupuncture? Should I try another pelvic floor PT, with more frequent visits?
Personally, I would suggest finding a doctor trained specifically in pelvic floor dysfunctions and pain (for example, I see Dr. Echenberg in PA; you can check my thread for more details. Only then will you get a full view of the potential underlying factors of your pain (IC, pelvic floor disorders, neuralgias, etc.). You should also seek a PT that is specifically trained in pelvic pain and dysfunction. It's possible that your PT, as webslave said, just didn't know what she was doing. A good place to start would be the list on the International Pelvic Pain Society site.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
thomydiamond83
New Member
New Member
Posts: 2
Joined: Tue Oct 01, 2013 8:20 pm

Re: My Saga, I need helpful suggestions...

Post by thomydiamond83 »

Hello snowbro, sorry for my English. I'm from Germany. I am Thomas, 30, and suffering from CPPS since June, 2012.
  • I had my first success by biofeedback. "The awareness of his hidden muscle" (February 2013)
  • Whether at work or at the supermarket checkout I tensed my pelvic floor muscles
That gave me a cure to 85%.

Currently I'm doing massage Trigger Point, in self-treatment to belly / Adductor. No pain currently.

There are people who tighten their pelvic floor muscle in stress! If someone had told me before CPPS, I would not have believed him
Greeting Thomas
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By: | Other comments:
jcacciat
Intermediate Member
Intermediate Member
Posts: 62
Joined: Mon Jul 25, 2011 4:42 pm
Location: Des Moines, Iowa

Re: My Saga, I need helpful suggestions...

Post by jcacciat »

Hi Snowbro,

It is discouraging that members of your profession continue to ignore the substantial evidence that this is primarily a myofascial pain condition, and not organ-based. But welcome to my world.

Based on my own experience (CPPS since late 2010) and my own research, I would guess that your pain is emanating from trigger points in one or all of the following areas: the anterior levator ani (puborectalis); abdominal muscles (rectus abdominis and/or obliques and/or pyramidalis); the muscles of the urogenital diaphragm (bulbospongiosus, ischeocavernosus, superficial transverse perineal muscle).

You need to see a true pelvic floor specialist and there are very few of them. But if you were willing to travel to NYC to see Toth (don't get me started), you should book an appointment with Marilyn Freedman, PT, who practices in Great Neck on Long Island. Google her. She is one of the very best in the world at understanding this condition and these muscles, and she can provide a full evaluation. I have seen her and I have also been to the W/A clinic in Santa Rosa, and my own opinion is that you will get more individualized attention from Marilyn Freedman and a more comprehensive evaluation than if you attend the W/A clinic (the W/A clinic was extremely beneficial, but the evaluation was simply not comprehensive and I later went to see Freedman).

You are starting down a path of having to educate yourself about an area of medicine and anatomy that is not well-taught (or not taught at all) in medical schools. You will have to learn how to treat yourself, and the road to recovery is typically a long one. But it can be done. There is nothing wrong with your prostate.

Good luck.
Age: 45 | Onset Age: 45 | Symptoms: Pain/discomfort in shaft, pain/pressure in perineum, rectal pain, occasional testicle pain; some frequency and nocturia (but decreasing). | Helped By: Aerobic exercise. | Worsened By: Sitting is horrible.
Caedar
Old Hand
Old Hand
Posts: 319
Joined: Mon May 20, 2013 9:08 pm
Location: Massachusetts, USA

Re: My Saga, I need helpful suggestions...

Post by Caedar »

Caedar wrote:I too had serious bulbospongiosus trigger points on the midline, which caused urethral burning that eased on urination as well as ejaculatory pain. When I started being treated for IC (with Atarax; I am not on Elavil yet), that symptom as well as the trigger point vanished.
Sorry, I meant to say Elmiron, not Elavil.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
snowbro
New Member
New Member
Posts: 10
Joined: Tue Dec 18, 2012 10:26 pm

Re: My Saga, I need helpful suggestions...

Post by snowbro »

Thanks so much to everyone for your encouraging replies.

At the moment, I have two thoughts and a half. One is that this is CPPS related to generalized tightness of my entire pelvic and abdominal musculature. The second, is that there is still a correlation from trauma during the right inguinal hernia repair. I guess the third option is that the tightening process during healing and scarring of my surgery, let to the overall CPPS tightness of the pelvic floor. I guess there is also a 4th option: central sensitization of a pain pathway.

I have spoken to my pain specialist and another general surgeon. I explained my procedure back in April 2012, which involved a plug and a mesh repair, sutured down. They suspect proline sutures were used which are non-absorbable, and hence, a few months after surgery when the scar tissue forms, there can be closure of a suture over a nerve which can cause dysfunction of that nerve. Since pain is mostly in the perineum and extends up the shaft (referred), they are suspecting the genitofemoral nerve and not the ilioinguinal nerve. I was told by my original surgeon that the ilioinguinal was found during the procedure, and protected and preserved out of the way. (But who really knows). This second general surgeon has described patients with my exact symptoms after the same hernia type repair using proline sutures.

Both doctors think a cystoscopy is a waste of time. They do recommend an MRI-pelvis to look at the anatomy and how the mesh has healed and rule out any black swan type issues. My pain specialist wants to do a right-sided genitofemoral nerve block (near and around the mesh). His thoughts are, if that removes the pain, you have found the culprit. If that were to be the case, repeat surgery isn't necessary, he would just ablate the nerve. If there is no pain reduction, than I will likely have to pursue other options, like more serious pelvic floor rehabilitation.

Regarding my past pelvic floor PT, her name is Pamela Downey (based out of Coral Gables), and she is one of the ONLY pelvic floor PTs on the south-east coast. She seemed to know her stuff very very well. She knows all about Headache in the Pelvis, and is a subscriber to that system. I'm not sure if it was for lack of going to enough sessions in a row, lack of doing my homework, or whatever it was, but most of the time, my pain would flare up after seeing her.

Regarding acupuncture, I have now gone to 4 sessions over the past week. First session I experienced no changes. Second session, I came in with 8/10 pain and left with 5/10 pain. My 3rd session I came in with 5/10 pain and left with 3/10 pain. My fourth session, I came in with 5/10 pain and left with 5/10 pain. It seems to hold some promise, I think largely from the relaxation of listening to quiet music and freeing all your thoughts and stresses of life for the hour you are there. There is also the nice feeling of someone actively working on you to try and help you.

My next plan of attack:

1. MRI pelvis
2. Right genitofemoral nerve block (see attached picture)
3. If above doesn't work, will seek out a pelvic floor specialist I can see more often.
Nerve.jpg
Nerve.jpg (11.49 KiB) Viewed 837 times
Age: 34| Onset Age: 33| Symptoms: waxing and waning pelvic, perineal, and urethral pain, occasional urgency| Helped By: massage/distraction/exercise/sex | Worsened By: stress/sitting| Other comments: I am a physician trying to solve this problem in a systematic fashion
Caedar
Old Hand
Old Hand
Posts: 319
Joined: Mon May 20, 2013 9:08 pm
Location: Massachusetts, USA

Re: My Saga, I need helpful suggestions...

Post by Caedar »

snowbro wrote:At the moment, I have two thoughts and a half. One is that this is CPPS related to generalized tightness of my entire pelvic and abdominal musculature. The second, is that there is still a correlation from trauma during the right inguinal hernia repair. I guess the third option is that the tightening process during healing and scarring of my surgery, let to the overall CPPS tightness of the pelvic floor. I guess there is also a 4th option: central sensitization of a pain pathway.
It's likely that at least two of these underlie your symptomology. The 1st option is a feature of 90%~ of CPPS phenotypes, and the 4th is also widespread. Traumas/surgery can precipitate chronic pain, so options 2 and 3 are also important to think about.
snowbro wrote:Since pain is mosly in the perineum and extends up the shaft (referred), they are suspecting the genitofemoral nerve and not the ilioinguinal nerve. I was told by my original surgeon that the ilioinguinal was found during the procedure, and protected and preserved out of the way. (But who really knows). This second general surgeon has described patients with my exact symptoms after the same hernia type repair using proline sutures.
The pudendal nerve is also implicated in penile shaft pain, as it ends in the dorsal nerve of the penis and the perineal nerve. Just something to keep in mind.
snowbro wrote:Both doctors think a cystoscopy is a waste of time. They do recommend an MRI-pelvis to look at the anatomy and how the mesh has healed and rule out any black swan type issues. My pain specialist wants to do a right-sided genitofemoral nerve block (near and around the mesh). His thoughts are, if that removes the pain, you have found the culprit. If that were to be the case, repeat surgery isn't necessary, he would just ablate the nerve. If there is no pain reduction, than I will likely have to pursue other options, like more serious pelvic floor rehabilitation.
A nerve block can be a helpful diagnostic tool, but a nerve ablation right away might be a little drastic. It might be worth it to do PT focused on that nerve, as the nerve might be compressed by muscles in the area rather than being permanently entrapped, which might justify aggressive measures like nerve ablation.
snowbro wrote:Regarding my past pelvic floor PT, her name is Pamela Downey (based out of Coral Gables), and she is one of the ONLY pelvic floor PTs on the southeast coast. She seemed to know her stuff very very well. She knows all about Headache in the Pelvis, and is a subscriber to that system. I'm not sure if it was for lack of going to enough sessions in a row, lack of doing my homework, or whatever it was, but most of the time, my pain would flare up after seeing her.


Pain flares immediately after PT during the beginning are common. How was your pain overall while seeing her?
snowbro wrote:Regarding acupuncture, I have now gone to 4 sessions over the past week. First session I experienced no changes. Second session, I came in with 8/10 pain and left with 5/10 pain. My 3rd session I came in with 5/10 pain and left with 3/10 pain. My fourth session, I came in with 5/10 pain and left with 5/10 pain. It seems to hold some promise, I think largely from the relaxation of listening to quiet music and freeing all your thoughts and stresses of life for the hour you are there. There is also the nice feeling of someone actively working on you to try and help you.
If it's helping you, that's great! Remember that it's just one element of your total care plan.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
User avatar
webslave
Maintenance
Maintenance
Posts: 11429
Joined: Wed Oct 30, 2002 3:18 pm
Location: Please give your location so we can help better
Contact:

Re: My Saga, I need helpful suggestions...

Post by webslave »

She knows all about Headache in the Pelvis, and is a subscriber to that system. I'm not sure if it was for lack of going to enough sessions in a row, lack of doing my homework, or whatever it was, but most of the time, my pain would flare up after seeing her.
  1. The fact that she knows about Headache in the Pelvis and subscribes to the concepts is no guarantee that she knows what she is doing or is a good therapist for this condition.
  2. Flares after pelvic floor manipulation is highly indicative of run-of-the-mill CPPS.
  3. Nerve blocks can cause problems of their own. A surgeon once told me to keep away from surgeons.
HAS THIS SITE HELPED YOU?
Say Thanks by donating. Keep the
Forum alive on the Internet!
PayPal link at end of page ↓

Contact me at support at ucpps.men
Caedar
Old Hand
Old Hand
Posts: 319
Joined: Mon May 20, 2013 9:08 pm
Location: Massachusetts, USA

Re: My Saga, I need helpful suggestions...

Post by Caedar »

webslave wrote:Nerve blocks can cause problems of their own. A surgeon once told me to keep away from surgeons.
Could you expand on this? Would you recommend nerve blocks to help reduce peripheral (and hopefully, central) sensitization when they are combined with effective, sustained PT and all other components of holistic CPPS care (relaxation, diet, etc.)?
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
User avatar
webslave
Maintenance
Maintenance
Posts: 11429
Joined: Wed Oct 30, 2002 3:18 pm
Location: Please give your location so we can help better
Contact:

Re: My Saga, I need helpful suggestions...

Post by webslave »

HAS THIS SITE HELPED YOU?
Say Thanks by donating. Keep the
Forum alive on the Internet!
PayPal link at end of page ↓

Contact me at support at ucpps.men
jcacciat
Intermediate Member
Intermediate Member
Posts: 62
Joined: Mon Jul 25, 2011 4:42 pm
Location: Des Moines, Iowa

Re: My Saga, I need helpful suggestions...

Post by jcacciat »

FWIW, the pain you describe in the shaft is very similar to what I experienced due to abdominal trigger points. That pain has resolved with self-treatment of those trigger points.

I had a hernia surgery when I was very young, and though I cannot explain all the mechanisms, I have come to believe this was the start of the development of unhealthy myofascial tissue in that region.

I would expect the pain to flare after PT, at least initially. If she has not checked your abs, she has not been thorough, and I will be surprised if you do not have trigger points in that area.

The nerve block smacks of a quick fix where there is none. A very U.S.-based medicine mindset, and the same mindset that has been misdiagnosing patients with "prostatitis" for 100 years. Dr. Snowbro, I truly hope you get relief from the procedure, but if not, move quickly to the realization that there are no pills or procedures to get out of this. It will take bodywork and a systematic calming of the mind and body. I have been at it now for over 2 years, and I am seeing light at the end of the tunnel.
Age: 45 | Onset Age: 45 | Symptoms: Pain/discomfort in shaft, pain/pressure in perineum, rectal pain, occasional testicle pain; some frequency and nocturia (but decreasing). | Helped By: Aerobic exercise. | Worsened By: Sitting is horrible.
Caedar
Old Hand
Old Hand
Posts: 319
Joined: Mon May 20, 2013 9:08 pm
Location: Massachusetts, USA

Re: My Saga, I need helpful suggestions...

Post by Caedar »

webslave wrote:viewtopic.php?t=134
Thanks for the link. However, this discussion was from 2002 and no studies were cited (even though Dr. Dimitrakov is obviously an expert), which makes me question its generalizability. For example, a 2009 study showed that lidocaine and mexiletine can suppress the excitability of dorsal horn neurons, which are intimately linked to the sensitization of the central nervous system. (Given, this study was in vitro with rat dorsal horn neurons.) Considering that central sensitization is common in CPPS, IC, IBS, etc., couldn't lidocaine nerve blocks theoretically help that component? I'll have to see if I can find some more studies. (Sorry to hijack the thread; I'm just really interested in this component of the syndrome, and the topic of nerve blocks is valid to snowbro's case if he has signs of sensitization.)
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
User avatar
webslave
Maintenance
Maintenance
Posts: 11429
Joined: Wed Oct 30, 2002 3:18 pm
Location: Please give your location so we can help better
Contact:

Re: My Saga, I need helpful suggestions...

Post by webslave »

When I had an irritated nerve emerging from the spine I investigated a nerve block. I found that lidocaine is a carcinogen (data: local anesthetics lidocaine and prilocaine are metabolized to their constituent aromatic amines, which are both tumorigenic in rats).

In some rare cases, nerve blocks may actually irritate the nerve further, causing an increase in pain.

So it's a little risky, and the pain control only temporary.
HAS THIS SITE HELPED YOU?
Say Thanks by donating. Keep the
Forum alive on the Internet!
PayPal link at end of page ↓

Contact me at support at ucpps.men
Post Reply