My story, and I have one big question.

[aspiesinger]

PT only works for some people, it depends on underlying pathology. If the nerve is entrapped in tight bands of muscle it can work very well. If it's trapped in scar tissue, or if you have spinal pathology, or any other number of possible issues, it might not be something that would respond to PT.
Don't stress over the idea of permanent damage. I had my initial pelvic injury causing IC in 1985, and then began to develop progressive neuropathy including neurogenic bladder after childbirth in 2004. I didn't have my pelvis straightened out until 2009 and didn't get surgery to correct spinal pathology (to release pressure on the nerve roots) until 2012. But i am getting better. nerves can be pretty resilient.

Thank you for the reassurance. I recall my PT saying I have what seems like minor scoliosis at the base of my spine (practically in my butt) after she looked at/worked on my back after I told her I was having lower back pains (it hurts so bad sometimes my boyfriend can't even put any pressure there when he tries to massage me without my body totally scrunching up in pain and me nearly screaming, it's awful). Could a bend in my spine possibly be causing the problem? I just don't know much about this stuff yet, I don't even know if the bend is new or if I always had it and it was overlooked because it's not very big. I think my parents said if it's a possibility my back is messed up I should have it looked at by an orthopedist.

[HerMajesty]

I was acually told on several occasions that I had "minor scoliosis", when it was actually an illusion created by the twisted pelvis. One of my legs was 1.5 inches longer than the other for 24 years before a PT noticed it (sounds insane, but true!) - not actually longer leg bones, just that one heel extended 1.5 inches past the other if I lay down straight, due to pelvic misalignment - and so the obvious result was that if I stood with my legs together and bent to touch my toes, things would not look symmetrical in the lower back.
A lumbosacral MRI to rule out spinal pathology would seem extremely reasonable in a case of unexplained neurogenic bladder. You really need to have a definitive answer about whether the problem originates in the spine or not. There are some questions about the accuracy / validity of the imaging used to visualize the pudendal nerve; but a spinal MRI is very standard in Radiology, and should give you a definitive answer about whether the problem originates in your back.

[aspiesinger]

I was acually told on several occasions that I had "minor scoliosis", when it was actually an illusion created by the twisted pelvis. One of my legs was 1.5 inches longer than the other for 24 years before a PT noticed it (sounds insane, but true!) - not actually longer leg bones, just that one heel extended 1.5 inches past the other if I lay down straight, due to pelvic misalignment - and so the obvious result was that if I stood with my legs together and bent to touch my toes, things would not look symmetrical in the lower back.
A lumbosacral MRI to rule out spinal pathology would seem extremely reasonable in a case of unexplained neurogenic bladder. You really need to have a definitive answer about whether the problem originates in the spine or not. There are some questions about the accuracy / validity of the imaging used to visualize the pudendal nerve; but a spinal MRI is very standard in Radiology, and should give you a definitive answer about whether the problem originates in your back.

Whoa, that's crazy, and I was also told a few times one of my legs was longer than the other, but they didn't seem to think it was that big of a deal, and I don't remember which leg. I do know it's more comfortable for me to stand if i keep one leg straight and one bent (I also have to sleep in a bizarre position for the most comfort at night, I'd say it's similar to the way I sometimes stand though). They also have all said the right side of my pelvic floor is much worse as far as tightness, and it hurts more when worked on (I do have pain when I'm touched with decent pressure, but never pain during day to day life, just the constant urgency).

I did have an MRI to check for a tethered spinal cord about a year ago, but it was an open MRI and I've been told since that those are useless for spinal cord scans? I'm not sure. Also if they were only looking for one thing, anything else may have been missed I would think.

I wish I had found this forum sooner, I was hanging out a lot on the ic-network due to my PFD diagnosis and I was starting to think maybe I had IC, since my symptoms sort of started after a UTI, but the more I read, the more IC didn't piece together at all as a possibility based on my symptoms and tests I've had done, such as cystoscopy (I also tried some treatments for that just to see, and the diet; absolutely nothing happened). It was a severe UTI and during the time I had it I was straining to pee a lot, because of the feeling of needing to go so much. I wanted to squeeze it all out (I also had no pain with the UTI, weird?), and I wonder if I made my muscles tense doing that and pinched my pudendal nerve up in the process. Would that cause my pelvis to become misaligned though? or maybe it already was and was brought to light by this problem.

[HerMajesty]

All kinds of injuries can lead to pelvic misalignment; Sometimes sports injuries, sometimes falls, sometimes pregnancy and birth related...One thing I was curious about, was whether the "aspie" part of "aspiesinger" is a reference to Asperger's Syndrome; because sometimes people on the autism spectrum have "low tone" of the muscles, and weak core muscles make one more prone to pelvic injury. But maybe I am misreading the intent of the screen name (?) Personally I injured my pelvis on a backpacking trip, carrying a very heavy pack off-trail over rough terrain - left healthy and came home with what I thought was a bladder infection and turned out to be IC. At the time they thought IC was an autoimmune disorder so I didn't actually learn about the underlying pelvic injury until going into PT to treat PN in 2009.
It's easy enough to check about the leg length: Lie against a straight edge reference point such as on a table aligned with the edge, or on the floor aligned with a yardstick, so that you know your body is in a straight line. Put your feet together and have somebody check whether they are even at the heels.
I don't know the answer about open vs. closed MRI; but if the quality of the image turns out to be equivalent, you can address your other concern by having the films re-read by another Radiologist as opposed to getting a whole new MRI.
BTW, pelvic joint injury will almost never show up on any type of imaging. Occasionally there might be a hint of a more complex injury on a set of films, and that hint is usually a slightly bent coccyx or slightly widened pubic symphysis. but usually nothing. It's a hands-on diagnosis by a PT trained in Manual Therapy. The reason for this, is because films show still pictures of anatomy (structure), but pelvic joint dysfunction is a problem of a joint that is "stuck" (hypomobile), and/or a joint that has too much play in it (hypermobile). So it is a problem of movement or function (physiology). Still images won't catch it. A Manual Therapy PT is trained in hands-on tests of joint mobility.

[aspiesinger]

All kinds of injuries can lead to pelvic misalignment; Sometimes sports injuries, sometimes falls, sometimes pregnancy and birth related...One thing I was curious about, was whether the "aspie" part of "aspiesinger" is a reference to Asperger's Syndrome; because sometimes people on the autism spectrum have "low tone" of the muscles, and weak core muscles make one more prone to pelvic injury. But maybe I am misreading the intent of the screen name (?) Personally I injured my pelvis on a backpacking trip, carrying a very heavy pack off-trail over rough terrain - left healthy and came home with what I thought was a bladder infection and turned out to be IC. At the time they thought IC was an autoimmune disorder so I didn't actually learn about the underlying pelvic injury until going into PT to treat PN in 2009.
It's easy enough to check about the leg length: Lie against a straight edge reference point such as on a table aligned with the edge, or on the floor aligned with a yardstick, so that you know your body is in a straight line. Put your feet together and have somebody check whether they are even at the heels.
I don't know the answer about open vs. closed MRI; but if the quality of the image turns out to be equivalent, you can address your other concern by having the films re-read by another Radiologist as opposed to getting a whole new MRI.
BTW, pelvic joint injury will almost never show up on any type of imaging. Occasionally there might be a hint of a more complex injury on a set of films, and that hint is usually a slightly bent coccyx or slightly widened pubic symphysis. but usually nothing. It's a hands-on diagnosis by a PT trained in Manual Therapy. The reason for this, is because films show still pictures of anatomy (structure), but pelvic joint dysfunction is a problem of a joint that is "stuck" (hypomobile), and/or a joint that has too much play in it (hypermobile). So it is a problem of movement or function (physiology). Still images won't catch it. A Manual Therapy PT is trained in hands-on tests of joint mobility.

Yeah I am autistic, no one ever told me my core would be weaker and such. I do have terrible balance and can't ride a bike or skate though. I didn't get to PT today but I will talk to get on Tuesday about all the info you've given me. Thanks. I will attempt to check my heel alignment soon too.

[HerMajesty]

Low tone, really called hypotonia, is common but not universal in autism. Not to mention a lot of people without hypotonia manage to injure their pelvis. If you search the term "hypotonia" maybe you can identify whether it is something you have experienced. I get the impression that hypotonia is most pronounced in childhood for some people, and reduces with age - just personal observation of autistic family and friends, I do not have any data to back that one up.

[aspiesinger]

Low tone, really called hypotonia, is common but not universal in autism. Not to mention a lot of people without hypotonia manage to injure their pelvis. If you search the term "hypotonia" maybe you can identify whether it is something you have experienced. I get the impression that hypotonia is most pronounced in childhood for some people, and reduces with age - just personal observation of autistic family and friends, I do not have any data to back that one up.

I looked it up briefly, well, I can't get anywhere close to touching my toes without having to bend my knees a lot, would that be the result of this? I'm just generally inflexible. I didn't miss any developmental milestones though.

[HerMajesty]

Low tone, really called hypotonia, is common but not universal in autism. Not to mention a lot of people without hypotonia manage to injure their pelvis. If you search the term "hypotonia" maybe you can identify whether it is something you have experienced. I get the impression that hypotonia is most pronounced in childhood for some people, and reduces with age - just personal observation of autistic family and friends, I do not have any data to back that one up.

I looked it up briefly, well, I can't get anywhere close to touching my toes without having to bend my knees a lot, would that be the result of this? I'm just generally inflexible. I didn't miss any developmental milestones though.

I don't think hypotonia would cause problems with flexibility, just with strength and coordination. If your pelvis is out of wack, you might not be able to touch your toes due to joint restriction. Hypotonia is more something you would maybe notice during gym class or, if they still do it these days, that yearly national physical fitness test they used to subject all the kids to at school (I'm twice as old as you, so not sure if they still do that). But you would have probably noticed less strength and athletic ability in comparison to the average girl your age. If this doesn't seem familiar to you, then you are probably not even hypotonic - it is not universal in autism, and many people who are not hypotonic wind up with SIJD. I was just speculating.

[aspiesinger]

I don't think hypotonia would cause problems with flexibility, just with strength and coordination. If your pelvis is out of wack, you might not be able to touch your toes due to joint restriction. Hypotonia is more something you would maybe notice during gym class or, if they still do it these days, that yearly national physical fitness test they used to subject all the kids to at school (I'm twice as old as you, so not sure if they still do that). But you would have probably noticed less strength and athletic ability in comparison to the average girl your age. If this doesn't seem familiar to you, then you are probably not even hypotonic - it is not universal in autism, and many people who are not hypotonic wind up with SIJD. I was just speculating.

Sorry this was so delayed, I've been trying to fix my computer's audio the past few days and been going out in between. Yes, they still do those national fitness tests, at least they did when I graduated high school (2010). I always did awful on them haha, I hated it. I did do worse than my peers, and I've always been generally weaker, so maybe I am hypotonic. Maybe not severely, but noticeably. The joint restriction thing probably is the issue then, I don't know a lot about anatomy to figure these things out, just I know I can barely bend forward in that fashion. My PT thought it was being caused by my back, but maybe it's my pelvis causing it (although maybe that could be making my back stiff as a result?).

[HerMajesty]

The pelvis is the kinetic center of the body so a problem there will usually result in a compensation further up. We were just discussing this in another thread regarding the jaw, but it effected my neck the most; and might affect any part of the back.
The mechanism is that your primary reflex is to keep your eyes on a level plane and keep you walking forward in a straight line. If the pelvis is twisted, you are not going to lean sideways or walk diagonally as a result. Instead you are going to compensate someplace else in the body. So, if for example the pelvic twists right, a vertebral facet or some other structure will twist left further up to compensate. As I said in my case, my neck locked up, and once a chriopractor looked at it and said i must have been born with forceps or been in a car wreck (neither one of those things actually happened), and he did a couple of adjustments which made my neck more flexible. That week I began to get low back pain i had never had before. So i stopped seeing the chiro, and gradually the neck stiffened up, which I was used to, and the back got better. Point being, when my body was denied the option to compensate in the neck, it just picked another spot which I liked even less. When I got my pelvis fixed, the neck loosened up spontaneously without manipulation.
The speacialty that deals with this is PT Manual Therapy, and PT's in various fields pursue Manual Therapy training in regards to the pelvis; but if you don't have a local pelvic floor PT who knows how to correct SIJD, in my experience Sports PT's are the #1 specialty that pursues pelvic Manual Therapy training. There are actually a limited number of practitioners who are really good at this. So if your own PT can't fix it, you might have some detective work ahead of you to locate somebody who can.