Pelvic Floor, Deficient Versatile Innervation

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I started Myrbetriq earlier this year when my OAB, which was previously managed by Oxybutynin, went into hyperdrive. After sever months with zero improvement I decided to schedule an appointment with my Urologist. But I ended up booking with a different doctor in the same practice, who I’d never seen, because my regular one wasn’t available.

After listening to my concerns the doctor started the routine exam (abdomen, penis, backside), but then it departed from the norm... He paid extremely close attention to my feet and toes. He tapped my backside, perineum, and thighs with sticks and asked me to identify how many he’d used [one or two]. At the end of the unorthodox exam he said my prior diagnosis was wrong...

He said my pelvic floor muscles had “deficient versatile innervation”, that the nerves at the end of my spinal cord were too thin.

He went on to explain my toes, which are slightly asymmetrical, were his first clue. Apparently the nerves that feed the toes sit higher in the spinal cord than those that feed the pelvic floor. Thus “thin” toe nerves equal even thinner pelvic floor nerves. The second clue, or nail in the coffin, was my inability to accurately report one tap or two...

The result of my thin nerves are bowels that don’t empty normally and occupy space reserved for the bladder.

I’m relieved to know why this is happening but somewhat frustrated by the prescribed solution which includes radical odd dietary changes (like avoiding ice and anything cold). I’m curious if anyone else has experienced this and even more curious what their treatment was like.

 

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I have no diagnosis like that but what you just said about bowel occupying space reserved for bladder seems the same or similar to what I feel is going on with me. I have both fecal and urinary incontinence and there seems to be some confusion going on inside me in that area. Also I've used those meds and also silodosin with no change or slight worsening. There are times I have to go and can't tell right away if it's bowel or urinary.

I am curious, do you have any unusual sensations in your legs or feet? I do. A burning sensation running down the backs of my thighs and numbness and pain in the soles of my feet around the toes. I am not presently seeking any medical intervention.

Also curious about how cold is cold that you have to avoid etc.

Would like to hear how your treatment goes.

Glad to see this post. Hope you have some success in your treatment.

 

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Funny you should mention a burning sensation running down the legs. My doctor asked about it specifically.

I do periodically experience this sensation (but not in my feet), more so when I pack on a few too many pounds. But I’ve always thought it was sciatic nerve trouble; which it probably is. However the doctor said there is a known, but not well understood, link.

As for cold, and the avoidance of it. The vagus nerve, which runs along the esophagus, is one of the gut’s signaling devices. According to my doctor cold food/beverages tell it to send “slow-down” signals to the gut. And a slow moving gut exacerbates my bladder issues.

 

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That is something I've never heard of. You might want to consider getting another opinion before radically changing the direction of your treatment.

That said, dietary changes are generally not harmful (within reason, anyway), so it seems like there is little to lose in trying the dietary changes, at least to see how they do.

 

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Thanks for sharing Itapilot.

I am considering getting a second opinion even though I’m inclined to believe the diagnosis is correct or near to it.

My original post didn’t mention my life long IBS-D issues, but perhaps it should have. Its never caused bowel incontinence but its just short of Kryptonite for me. This particular pelvic floor issue is known [according to the doctor] to cause or coincide with IBS (D & C).

The doctor also noticed, during the abdominal exam, that my lower bowel felt full when I had zero urge to have a movement. Which was inline with the diagnosis and anecdotally seems to explain a lot of my other bowel complaints.

The sudden worsening of symptoms also seems to be in line. Nerve density, in everyone, begins to decrease in the 20s and continues throughout life (albeit at different, unique rates). People who start out with normal density are less likely to notice the change. While others with lower density may have sudden symptom onset when they “fall off the cliff,” and some may have problems most of their life that get worse with age (like me).

In my search for understanding I found a book by a Urologist that explains the issue from an evolutionary perspective (“Seeking Symmetry” by Dr. Nial Galloway available on Amazon). It’s actually a pretty fascinating read. It explains, among many things, the idea of the mammalian tail as an insurance policy for the spinal cord during gestation. Apparently certain cells serve a specific purpose during gestation and die when that purpose has been achieved. However the body uses an imperfect death signaling mechanism and collateral damage is common. Humans lacking a tail don’t have this insurance policy and because nature values the head more than the bottom the nerves at the bottom of the spinal cord are the first and hardest hit if something goes wrong.

That said, I came to this forum hoping someone had heard of this. For confirmation I wasn’t a crackpot for entertaining the diagnosis...

I like to think I’m not a drug-seeking patient but I think I would have accepted this diagnosis more readily if a prescription were the star of the show.

I, like everyone here, just want to be in control of my own body...