Help needed for complex, desperate case

[MysteryCase]

Hi everyone, 42M, I'm writing to solicit some kind of guidance/advice on my mystery case that has baffled doctors and physical therapists for 16 years.

I'll try to give a brief overview of my complex case:
16 years ago, I got what I believe was an infection/UTI. Had lots of bladder pressure, frequently peeing small amounts.
When I finally got on the right antibiotic, the acute symptoms above went away but I felt something tighten inside and it has never let up since. That's when my chronic symptoms suddenly started:
Weak urinary stream
Frequency, urgency, hesitancy
I need to spread my legs wide apart in order to keep something open, or else I cannot void completely. Something feels tight inside.
Weak ejaculation; erections take a while to fully subside after ejaculation.
Bowel movements cause a weird foreign body sensation inside and temporarily causes more frequency/urgency.
No real pain, no prolonged flares, and no flaring down from baseline. Symptoms just suddenly appeared and have never left.

Doctors cannot find anything wrong with me. I've had every test in the book.
A couple years ago I discovered pelvic floor PT and went for a few visits. The PT found tightness/trigger points in my abdomen (likely from straining through the tight spot internally when urinating). Work on the abdomen made everything worse but it has not improved.

Why am I writing in this forum? Because I had a pudendal nerve block that temporarily cured my symptoms for about 8 hours. I had numbness and retention right after the block, but a few hours later everything relaxed and I was able to pee like a normal person before the cure wore off.

Here's where things get weirder: PTs cannot find the right spot I feel inside. My current PT, who is excellent, says there's nothing wrong with my pelvic floor, even though my case screams "tight muscles."

Likewise, I have no signs of classic pudendal neuralgia. I've been evaluated by Conway in person, who couldn't find anything. I've consulted with Hibner who said I probably had tight muscles but this just doesn't seem to be the case as no amount of PT or stretching has ever affected my symptoms.

I've had Botox injections into my external urethral sphincter and prostate. I'm currently trialing Interstim with no real results.

To date, the only thing that has helped has been that first pudendal nerve block. I've had other nerve blocks since then but we haven't been able to replicate those results.

I'm not asking for medical advice, but I am asking for suggestions about people to consult with or approaches to try since my case has stumped everybody. And it has destroyed my life since my abdominal issues got activated (but these truly seem to be secondary to something else).

Does anyone out there have an idea or two to spare? I live in New England but can travel to see anyone...

[MysteryCase]

I should add that we have ruled out psychological factors here. I spent 10 years on antidepressants after this problem appeared and before it got horribly bad with the abdomen. I could live "normally," but my symptoms never changed and are unaffected by my mood or stress/anxiety levels...

[Violet M]

That's tough when no one can figure out what's going on. Did your subsequent nerve blocks cause numbness and temporary loss of sensation like the first one did, showing that they successfully targeted the nerve?

I guess the problem is to figure out whether there is an actual obstruction caused by something like tight muscles, or whether the sensation you are experiencing is from an overly sensitized nerve that is sending the wrong signals to your brain. And then, if it's the muscles you have to figure out what's causing them to tighten, but if it's an overly sensitized nerve you have to figure out what is causing it to be overly sensitive. Could it be nerve damage, constant nerve irritation from some type of entrapment, or something else? Sorry, just brainstorming here because the treatment and type of physician you go to depends on what the root cause is. If there's a possible entrapment you would consider seeing another surgeon, but if it's nerve damage from something else, like the antibiotic, then you would want to try something like stem cell treatment for healing the nerve, which would mean going to a different type of physician. So, I'm not sure who would be the best person to see next. Any of those things would be a stab in the dark to see if something might work. Have you had an MRI or MRN of the pelvis yet to help determine if there is a root cause that can be located?

Have you talked to doctors Elkwood and Lakhiani in New Jersey? Dr. Lakhiani specializes in microsurgery and might have a different approach than some of the more traditional PN doctors like Conway and Hibner. You could also email Dr. Aszmann, a plastic surgeon in Austria and see if he might have any thoughts on your case.

Violet

[MysteryCase]

Thanks very much for writing, Violet. Very kind of you. Let me see if I can clarify a few things to help pinpoint what next steps might be for me.

I've had 2 bilateral PN blocks. The first (without a steroid) caused numbness immediately and I had some urinary retention for maybe 4-5 hours afterwards. These wore off and, all of a sudden, I could pee again. For around 7-8 hours everything was easy, wide open, and I felt empty and calm afterwards. (I still had some urgency/frequency from the abdominal issues, understandably.) The second bilateral PN block was done with a steroid. I remember being numb afterwards, I don't remember having the same kind of retention, and when the numbness wore off a few hours later I didn't have that magical window like I did the first time. I always thought the numbness was from the anesthesia, and not from the pudendal nerve being hit, but I don't know enough about these blocks. I always guessed that second one might have failed, since it seems some percentage of pudendal blocks don't take.

I also did a superior hypogastric plexus block. This caused some numbness in my lower back as well as mild erectile dysfunction for a couple months. As with the second PN block, it didn't seem to affect the root cause of my symptoms. Do these other failed blocks point away from neurological causes?

You're absolutely right that figuring out whether there is a true "tight spot" or whether we're dealing with improper signaling is key. It certainly *feels* like I'm straining through something, and I (almost involuntarily) use my abdomen to push the urine out faster. My stream got noticeably weaker when this started, I use my perineal muscles to push urine through that area, and urologists have noticed tightness around my bulbar urethra (not a stricture) during cystos and during catheterization. However, no muscle treatments have ever changed my symptoms for the better.

I always thought that having an untreated infection for ~3 weeks was what threw my system off. Did this cause faulty nerve signaling? Perhaps, though here too there's no "slam dunk" explanation. My symptoms don't really change, which could point to nerve signaling, but I have absolutely no signs of neuropathy or entrapment. No pain, no numbness, no erectile dysfunction. Just difficulty urinating, weak ejaculation, and erections take a while to subside after ejaculation, as if something is getting way too tight at that moment. (I don't mean to overshare; these symptoms clearly have the same cause and all came on together.)

I should add that when I first discovered that the pelvic floor was a thing, I tried doing unsupervised "reverse kegels," pushed too hard, and felt something tighten again which worsened my symptoms: I had to spread my legs even wider apart to urinate and erections took even longer to subside after ejaculation. This screams "hypertonic pelvic floor," I know, but no one can find what exactly I did.

I have had an MRI of the pelvis that was read by people at the Brigham hospital in Boston. This didn't show anything, though I don't know if I should have different pelvic experts look at the results.

I haven't spoken to Drs. Elkwood or Lakhiani, though I don't know if surgeons would know what to do with me given there are no signs of entrapment or pain. Hibner and Conway were in agreement on this point. Hibner suspects there is muscle tightness in a place PTs can't reach, so recommends Botoxing the whole pelvic floor. He suspects that first PN block simply stopped innervation temporarily to whatever is tight inside, and everything resumed once the block wore off.

I did find contact details for Dr. Aszmann--does he do e-consults or accept unsolicited case reviews?

Apologies for the extra information dump! It's so nice of you to even engage with me on this.

[Violet M]

Hello Mystery Case,

My understanding about nerve blocks is that the marcaine (or whatever anesthetic they used in your case) numbs the nerve -- but only if the medication gets close enough to the nerve. Did they use some kind of imaging for your nerve blocks? The way Dr. Antolak explained it to me is that the way you can tell whether the nerve block medication got close enough to the nerve is whether the areas innervated by the pudendal nerve lose sensation after the block. If they lose sensation, and if your symptoms are temporarily improved, then the block is diagnostic for a pudendal nerve issue. So, I don't know, maybe your second block just didn't get as much medication to the right area. With all of my nerve blocks (3 of them) I had loss of sensation in the distribution area of the pudendal nerve and significant relief of symptoms. It wasn't 100% relief for all of them.

I'm not sure if Dr. Aszmann takes unsolicited emails but I'm guessing since that's the contact info he gave us to put on the forum that it would be OK to email him to see if he's ever seen a similar case or if he has any treatment recommendations based on your history.

If it's not an entrapment as Conway and Hibner say, but maybe just nerve damage from the infection or possibly even the antibiotic, then I'm not sure what the best course of treatment would be. There is a thread on the forum about people who say their symptoms started after taking an antibiotic and they think the antibiotic damaged their nerve. It's hard for you since you don't know if you have some kind of nerve damage or some kind of blockage. If it's nerve damage you could consider stem cell treatment or hyperbaric oxygen. I did some hyperbaric oxygen treatments because there was some literature suggesting that it can heal nerves, so my insurance company covered half of it. It would likely not be effective if you had an entrapment that wasn't released first but it sounds like you likely don't have an entrapment.

Violet

[MysteryCase]

Thanks for your thoughts, Violet. Like you, I am a bit torn on how to proceed.

After spending the week finishing my (failed) Interstim trial, I'm really internalizing the fact that no one can find anything wrong with me internally. I have none of the classic pudendal neuralgia signs, nor do I have tight internal pelvic floor muscles. My understanding is that even pudendal nerve damage from an infection would come with recognizable signs of pudendal nerve problems.

To date, the only thing anyone can find wrong with me are trigger points and tension in my lower abdomen around my bladder. Since my PT activated those trigger points, I can feel them making my symptoms much worse. So what if this is the root cause after all? What if I need to find a way to normalize my abdomen and break the habit of using it to push during urination?

It's easy for me to see how severe tension and trigger points in this area could be causing urinary/sexual issues in the absence of any other identifiable problems. It's true that a pudendal block temporarily helped me, but Hibner wasn't impressed by that. I wonder if that block simply prevented my tight abdomen from causing internal dysfunction for a few hours.

The idea here is that, regardless of whether the initial onset was truly due to an infection or not, when my symptoms began my abdominal muscles started guarding and freaking out until they calmed down a bit with antibiotics. The infection (or whatever) went away, but the muscles stayed dysfunctional because I let it go so long. I admit this was an extremely stressful experience for me, so it's possible that I began storing tons of tension in this very area that has never been addressed because I never knew the abdomen could be the problem until my PT uncovered it.

Basically, from this POV, my symptoms *felt* internal, but that could be a red herring, a referral pattern from the lower abdomen.

So what I'm wondering is whether it's truly likely that I have a mystery internal problem that absolutely no one can find. Maybe instead I should focus on the identifiable external pelvic-area issues rather than going down more rabbit holes.

Does this all make sense? Maybe it's time to solve the puzzle of what we can actually find. I'd love a sanity check from anyone who read this far!

[Violet M]

When you had that initial infection 16 years ago and took an antibiotic, was the infection confirmed by a urine culture? Just wondered because you started out by saying you had what you "believe was an infection/UTI". How do you know it was a UTI? The reason I ask is because history is important in coming up with a diagnosis and if it wasn't truly a UTI maybe that information could be significant. Antibiotics have some anti-inflammatory properties so an antibiotic can sometimes help symptoms even if there is no infection.

Have your doctors ruled out interstitial cystitis?

You said these are your symptoms:

Weak urinary stream
Frequency, urgency, hesitancy
I need to spread my legs wide apart in order to keep something open, or else I cannot void completely. Something feels tight inside.
Weak ejaculation; erections take a while to fully subside after ejaculation.
Bowel movements cause a weird foreign body sensation inside and temporarily causes more frequency/urgency.
No real pain, no prolonged flares, and no flaring down from baseline. Symptoms just suddenly appeared and have never left.

But you say you have none of the classic pudendal neuralgia symptoms. I guess I'm a little confused by that because foreign body sensation with bowel movements is a classic symptom of pudendal neuralgia. Frequency, urgency, and hesitancy with urination are also symptoms of pudendal neuralgia. So is sexual dysfunction as you are describing it. These symptoms are listed on our symptoms page. https://www.pudendalhope.info/category/symptoms/
Not everyone has a lot of pain with PN. So, I am trying to figure out why the doctors are telling you that you don't have any of the classic symptoms of pudendal neuralgia.

Violet

[MysteryCase]

Hey Violet, thanks for the follow-up. You continue to ask the right questions, which I appreciate. I hope this isn't tedious for you.

I can't prove that the etiology was an infection. What I experienced certainly felt like one, but that's all I know: I woke up one morning with intense bladder pressure and a constant urge to pee (but often only getting small amounts out). An initial course of Levaquin did nothing, but when I finally saw a urologist 3 weeks later and tried Doxycycline, my symptoms changed 45 minutes after the first dose: the pressure went away, I felt something tighten inside, and the dysfunctional voiding and sexual symptoms started and haven't changed since. I called the doctor who initially put me on the Doxy, but they no longer have the records so I can't prove that this was actually an infection, though I'm sure they cultured my urine.

So although I can't say for sure this was an infection, my transformative response to the second antibiotic has always struck me as indicative of an infection. But as you say, maybe the Doxy got rid of some inflammation, after which my current symptoms set in.

You're absolutely right, also, that some of my symptoms seem to involve the pudendal nerve. I think that doctors are running up against the idea that I have no pain, no numbness, and no erectile dysfunction: my symptoms seem to fall under the "other possible symptoms" category, which just makes everything blurrier. Neither doctors nor PTs have any idea why I need to spread my legs wide in order to pee or why erections take a long time to subside after ejaculation. They seem not to have seen these symptoms before.

Doctors and PTs also seem to discount that first positive nerve block result, possibly because I don't have pain/numbness, and possibly because the block could simply have relaxed other muscles in the pelvis. They just seem to think it's not determinative in the absence of palpable nerve irritation, from what I gather.

What else in my history could matter? I had an SI joint injury at the gym about 13 months prior to the onset of my symptoms. I do know that SI joint problems can irritate the pudendal nerve, but I had PT for the injury with no change to the symptoms. Also, my pelvic PT checked the area and didn't find any pudendal irritation around the joint. Lastly, when trying to teach myself reverse kegels (thinking I had a pelvic floor problem), I strained a bit, felt something tighten again, and my main symptoms suddenly worsened. I had to spread my legs wider apart to pee, and erections stayed harder even longer before subsiding after sex. This suggests some kind of muscle problem...but no one can find any tight muscles.

This is all the information I can think of. My PT insists that, if she didn't know my case history, she'd wonder what I was even doing in pelvic PT. Likewise, no MDs can find anything wrong internally.

The only objective findings are trigger points and tension in my lower abdomen, around my bladder. My PT is convinced they're an effect, not the cause, of my symptoms. However, I want abdomen to be the cause: I do have the personality type of a "mind-body syndrome" sufferer, so I could have been storing tension in the abdomen for all these years. Further, it took 15 years for me to even learn I had any lower abdominal issues, which could have compounded things. But...could trigger points around my bladder truly be causing all this? Difficult urination, sure, but the sexual symptoms?

As I'm very fed up with medical rabbit holes and trying to pursue mystery causes where no evidence has been found, I'd love to start treating what we know is wrong. However, like every other theory about my case, it doesn't entirely add up...

[Violet M]

What else in my history could matter? I had an SI joint injury at the gym about 13 months prior to the onset of my symptoms. I do know that SI joint problems can irritate the pudendal nerve, but I had PT for the injury with no change to the symptoms. Also, my pelvic PT checked the area and didn't find any pudendal irritation around the joint. Lastly, when trying to teach myself reverse kegels (thinking I had a pelvic floor problem), I strained a bit, felt something tighten again, and my main symptoms suddenly worsened. I had to spread my legs wider apart to pee, and erections stayed harder even longer before subsiding after sex. This suggests some kind of muscle problem...but no one can find any tight muscles.

The only objective findings are trigger points and tension in my lower abdomen, around my bladder. My PT is convinced they're an effect, not the cause, of my symptoms. However, I want abdomen to be the cause: I do have the personality type of a "mind-body syndrome" sufferer, so I could have been storing tension in the abdomen for all these years. Further, it took 15 years for me to even learn I had any lower abdominal issues, which could have compounded things. But...could trigger points around my bladder truly be causing all this? Difficult urination, sure, but the sexual symptoms?

Maybe some kind of muscle problem, although it sounds more to me like a nerve problem if erections take longer to subside. And what nerve causes erections -- well, primarily the pudendal. But you also have the autonomic nerve pathways including the hypogastric plexus involved in erection. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1351051/ I don't know if that would have anything to do with the abdominal muscle tension. Has anyone suggested a hypogastric plexus block?
I don't know how pudendal irritation around the SI joint would conclude whether or not you have a nerve entrapment. If you had an SI joint injury it could affect your ligaments and your pelvic alignment causing symptoms lower down, not just the SI joint itself. Ligaments are notorious for not healing no matter how much PT you do. Pelvic misalignment can cause impingement on nerves. But, I'm assuming they must have checked your pelvic alignment?
If there is some kind of nerve impingement, I can see how your position/stance while peeing (spreading your legs apart) could relieve the impingement. So, I don't think that the fact that you have to spread your legs apart leads to the conclusion that this could only be a muscular issue and not a nerve issue.
Do you still exercise a lot?

I was doing 300 kegals a day due to pelvic floor prolapse when I was hit with pudendal neuralgia. I think the kegals made it worse but they weren't the underlying problem. So, possibly the reverse kegals you were doing that caused you to tighten up were just a trigger for increasing your symptoms but not necessarily the underlying problem.

Regarding mindbody syndrome, I had some sexual dysfunction when I had pudendal nerve entrapment, and I read some of Dr. Sarno's writings and tried the mindbody approach but it didn't do anything for me. There are people who used to be on the forum who have tried it and swear by it. You can read some of Ezer's posts on the forum about mindbody therapy -- just go to the search bar in the upper right.

As usual, I'm just brainstorming here. Sorry to be all over the map. Just hoping something here will spark something in your head that will lead you in the right direction.

Violet