Scoliosis, Pelvic Pain, and Pudendal Neuralgia

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This is an important message for those on the spectrum with scoliosis, connective tissue disorder, and really any musculoskeletal issues related to hypermobility or otherwise. If you don't have pain, all the more reason to read this in order to possibly prevent future pain from developing.

Just wanted to send out a precaution / PSA / message to all those with scoliosis, functional or anatomic short legs / leg length discrepancies, uneven SI joints, SI joint dysfunction, hip abnormalities (like FAI) and connective tissue disorders such as EDS, BJHS, etc. MS and fibro patients might want to know too.

You could be at risk for chronic pelvic pain (like me).

I know have a home health aide Mon-Fri and live in chronic pain so I wanted to possibly help prevent others from going through this experience.

The best way to treat pelvic pain is to prevent it from starting in the first place.

For milder forms of pelvic pain, pelvic floor physical therapy can be very helpful. (and people with connective tissue disorders are more likely to experience pelvic floor dysfunction at some point in their lives. I say better to see a PT if possible before there's an issue just by virtue of the fact that you're hypermobile.

Also, not all PTs are the same and you may need to try out a few before finding one who's a good fit for you. If it's not a good fit, don't be afraid to look for someone better. Pelvicguru.com and Herman and Wallace PTs can be helpful.

In my experience, chiropractors can be helpful to have a first appointment with because they will take x-rays and measurements of your spine and look much closer than any medical doctor at individual facets and joints. However, hypermobile people can be injured by chiropractic more than people without connective tissue disorders so I personally wouldn't necessarily recommend seeing a chiropractor for adjustments and definitely not the "crack your back" kind.

There are some places (PT and chiropractic) which offer laser therapy, acupuncture, supplements and more conservative treatments which are all generally safe and I would recommend.

Along with chiropractors, I would also be careful of any PTs or osteopaths who practice adjustments because hypermobile people usually can't take high-velocity movements which some practitioners apply to "set" joints in place.

One person who I can recommend is Jerry Hesch, a PT in Aurora, Colorado. He dealt with his own chronic pelvic injury for years and studied movement patterns of the pelvis. He was able to help himself heal through using stretches and adjustments he learned. He discovered that there are 12 movement patterns within the pelvis, most of which are not acknowledged by doctors and physical therapists today.

Because the pelvis is 3D there is more than one way it can become "stuck" or be malaligned. Jerry knows about hypermobility, hypomobility and can tell if there are bony / anatomic abnormalities in your skeleton such as an anatomically smaller left hemipelvis.

He helps people with joint dysfunction and spinal problems using much gentler, slow adjustment movements and stretches to allow the body to return to its personal functional state.

He also won't adjust you if he feels your issue is too complex or he can't find the root cause of your pain.

I write all this because I feel that maybe if I had known about Jerry sooner, he at least could have told me that I have a short left leg and that my left hemipelvis is smaller (which a chiropractor also told me after my pain began).

I had always noticed that my SI joints were uneven and something didn't look right, but I didn't research further. I would encourage anyone with scoliosis to learn more about anatomy so they can partially visualize what is going on in their body. I would give anything to go back in time and see acupuncturists and PTs who could possibly have helped partially undo my scoliosis rather than sitting in high school, at home, then at college and at work for years and years because I do think this inaction solidified some of my issues.

The book The Malalignment Syndrome by Wolff Herschberger is also a good resource for those with malaligned pelvises.

pudendalhope.org is also a good resource for those with pelvic, hip, lower spine, sacral, tailbone and SI joint pain.

Subscribed so I can bike more, thanks.

_________________
"Standing on a well-chilled cinder, we see the fading of the suns, and try to recall the vanished brilliance of the origin of the worlds."
-Georges Lemaitre
"I fly through hyperspace, in my green computer interface"
-Gem Tos

One point I forgot to mention is that scoliosis and pelvic pain can also be connected to Tethered Cord Syndrome. This is very important to know because scoliosis is the first sign of a tethered cord but it doesn't always show on MRI. You can have it and be told that your scoliosis is "nothing to worry about." This is NOT true. Preventative measures should be taken and physical self examinations of your spine and SI joints should be done.

I have had 6 MRIs and none of them show the debilitating twisting that is going on in my musculoskeletal system. SI joint abnormalities also will often not show on MRI. Sacral torsion can be a part of scoliosis / predisposition to pelvic pain. So can pelvic obliquity. It's important to know that the pelvis is 3D so there are multiple different planes where bones can be aligned improperly.

One other point I might add is that if you are someone who is prone to pudendal neuralgia, there are not many preventative measures which can be taken while biking. Often there is no pain/warning one day and BOOM the next day all of a sudden everything hits. I would even go so far as to suggest avoiding biking if you are someone with pelvic malalignment.

I would not wish my life circumstances on even my worst enemy and in my particular case, I believe the only way to have avoided my ailment was to never have done the movement which caused it in the first place. I also had a laparoscopic appendectomy which further twisted my pelvis out of alignment and created abdominal scar tissue causing stomach pain after eating.

I also developed a type of spinal cord injury. I am only 24 but I am now bedridden with intractable pain. If something about your body looks off to you, please persist with doctors and PTs in order to get the treatment you need before pain begins.

I believe I have a conus medullaris syndrome and/or a tethered spinal cord from birth but went undiagnosed for 24 years until my pain began. SSEP and ultrasound will sometimes show evidence of a tethered cord even when MRI does not.

i was assembled on a hung-over monday morning out of irregular left-over parts. [speaking figuratively ] that said, i have had to learn how to work within the limits of my physiology. i swear by medicinal-grade curcumin/piperine and 5-lox inhibitors, in addition to core exercises and lumbar/hip stretches done religiously. your hips and core support the rest of you so it is imperative they be reasonably limber and strong.

Months later, I would like to add a few more details to this post which I have realized only recently. Alongside tethered cord and Ehler's-Danlos syndrome, other types of spinal birth defects also have higher rates in people with autism I believe. Rates are also higher in twins and possibly all multiples, I'm not 100% sure. Unfortunately, doctors are taught that things like spina bifida occulta do not cause pain or symptoms but this is vastly untrue.

You can have spina bifida occulta or other types and not know it or have symptoms. Or you can have symptoms growing up such as bladder issues, chronic constipation, stomach pain/bloating, intermittent back pain, and frequent sprained ankles just to name a few. Or you can have symptoms in adolescence, young adulthood or even middle age after a traumatic event or injury which affects the fragile anatomical make-up of your body.

For example, growing up I would sprain my ankles from running on tennis courts. I thought this was from connective tissue disorder. I had bladder shyness and urinary hesitancy but I thought this was due to social anxiety. I ended up also having pelvic floor dysfunction and in some cases this is caused by connective tissue disorder but in others, it may also be anatomical. There can also be anatomical entrapments of pelvic nerves that you may not realize you have until a triggering event sets off symptoms. I'm just gonna go TMI here and say that many (not all) of the people whose pelvic pain is triggered is caused by sex or masturbation. This is because if the muscles in your hips, pelvis and spine are already crooked, thrusting your hips is a movement which can affect all of these muscle groups. If things are already crooked and malaligned, one movement affecting all these muscle groups will then set off a domino effect. c This malalignment is called "the perfect storm" by PN-aware pelvic PT Stephanie Prendergast.

Other causes of pudendal nerve entrapment include biking, weightlifting, excessive core exercises, falls, nerve damage from surgery, scar tissue entrapment, autoimmune disorders, and even chronic stress or excessive sitting.

I also had chronic constipation and intense stomachaches, but I thought this was due to irritable bowel or gastrointestinal issues related to autism and just self-managed, never really even saw a doctor for it until now. I have come to realize that my frequent ankle sprains, stomach pains, and bladder issues were in fact, all connected to skeletal abnormalities/deformities.

If you have minor issues like indigestion or things that you manage on your own, it never hurts to also see an EDS-aware gastro or urologist or naturopath to see if they can shed more light on the causes of some of your issues. Way easier said than done, of course, but worth a try at least. As I write this, I realize that my stomach pain and constipation was really not minor and affected my daily activities and life, but I became so accustomed to it that it was my normal and felt minor in a way to me.

Maybe anyone who reads this can write a list of their small and large health issues and ask themselves "How much is this affecting my life?" Or just to have a viewable list in front of you which you can then take action on and realize which areas your health is not at the level it should or could be.

There are so many different types of spina bifida and no two presentations are the same, similar to how no to people on the spectrum are the same in a way. Anyway, this is why spina bifida is called a snowflake disorder and must be treated by neurosurgeons who actually have knowledge of these conditions and complications they can cause. This post is getting longer than I meant it to but I will just add add that VACTERL is a good acronym to know about spinal birth defects because it lists different systems which can be affected. For example, A = anal atresia. Or, you could have anal stenosis where externally the parts appear normal, but internally is very very different from typical anatomy. The reproductive and urinary tracts can also be different from the norm. You'll probably need to research more of all this if you suspect it even slightly because it's too much info for me to have the energy to add here.

I would strongly suggest that anyone on this website try everything they can to see a geneticist or a naturopath who can do a genetic panel for connective tissue disorders and also other genetic issues. It is pretty hard to get the first time you ask, though. But, there are groups about conditions like EDS, Marfan's, spina bifida occulta, Bertolotti's Syndrome, EDS and tethered cord, POTs, MCAS, dysautonomia, etc. on facebook. I have found some of these groups invaluable for learning more information and for finding possible doctors who may be able to treat some of these conditions.

I'm not sure what my exact condition is called yet, but I think mine is possibly very rare because my whole skeleton is just so twisted and crooked. It's getting progressively harder to go to the bathroom and have bowel movements and I'm bedridden most of the time but that isn't comfortable either. If I could do it over again and could get any medical care I wanted, I would have done a 3D CT scan of my spine and sacrum to see how the bones formed. I also might go to the Hospital for Special Surgery in New York because they have 3D MRIs there which can detect things like leg length discrepancies, hip impingements or dysplasia, etc.

Most radiologists and even neurologists and neurosurgeons don't know about EDS presentations of tethered cord, spina bifida & other bony deformities. But the facebook groups listed will often have knowledgeable doctors to contact.

It's kind of terrifying because any chronic condition, no matter how severe, usually takes years to diagnose or find appropriate treatment for if there is treatment. This is partly why even if you think you're healthy I'd recommend seeing doctors for minor health issues if possible. That way, if something extreme ever happens, you at least have foundational knowledge about your health issues. I wish I could have took that route.

And I do think maybe facebook and other forums can help shorten the length of the search if you then have specific, knowledgeable contacts to consult and appropriate doctors.

Sorry for the incoherent book, but am too tired to edit and maybe someone can still find useful info if they're able to slog through my post lol.

i prolly have a buncha stuff awry in my innards, but being amuuuurican and bereft of quality health care [unaffordable here unless you have cadillac plan insurance that covers everything], i have not been able to definitively investigate my innards and i've had no choice but to attack just what symptoms i can attack, the major ones.

I have EDS and really should be working on pelvic floor PT exercises. To be honest I've neglected all of my PT once I stopped having appointments. I will really try to make the effort.

I have constant pain in my pelvic joints, but can't get anyone to give a damn. I have compression and bone spurs. I have a very active lifestyle. My pain makes me an excessively restless sleeper.

no more active lifestyle for me.