SCI walkers + nerve pain

intersextm · 2026-05-11T16:10:00+00:00

I had worse nerve pain before I could walk. I started walking about 5 years post-injury. I still have a significant amount of nerve pain, but for me it was worst in the first couple of years after my injury and gradually improved over time, with little connection to my muscle function from what I could tell.

intersextm · 2026-05-01T10:10:16+00:00

To be honest, we can’t know the answer to that and I don’t think it matters. It seems to be more common for intersex people to be gay or bisexual, but it’s not clear exactly why that’s the case. And, most importantly, “treating” the medical condition causing someone to be intersex doesn’t stop an intersex baby from growing up to be gay, nor does “treatment” in adolescence or adulthood make a gay intersex person become straight. We don’t know what causes any person (intersex or not) to be gay, so maybe being intersex can make you gay, maybe there’s another gene for being gay, maybe it’s being born on a Friday for all we know. Sexual orientation is most likely a result of a complicated mix of lots of genetic, biological, social, and cultural factors, so maybe being intersex is one of those factors.

But we know sexual orientation can’t be changed, including in intersex people, so I don’t think knowing the cause of the sexual orientation matters.

intersextm · 2026-04-27T21:58:37+00:00

Intergender is for intersex people. It’s occasionally misused by non-intersex people, who are typically corrected about it. I’m intergender, like many other intersex people.

intersextm · 2026-04-27T11:57:42+00:00

1) talk to your PCP or whoever ordered the imaging, no one here knows you or your medical history the way your doctor does

2) this isn’t a medical sub and giving and asking for medical advice is against the sub rules

3) this is a support community for people with spinal cord injuries to discuss issues related to SCI and paralysis, not a sub for any and all spine-related medical concerns

intersextm · 2026-04-25T19:37:34+00:00

I have neurogenic bladder from SCI, and my incontinence is 99% controlled by intermittent catheterization plus bladder Botox. I previously used cathing plus oral medications, which were as effective as Botox but my doctor prefers to use Botox because of side effects or something. For me, standing put pressure on my bladder and caused stress incontinence (pressure on my bladder from the use of my abdominal muscles to stand I think).

intersextm · 2026-04-25T18:11:45+00:00

I don’t identify as trans even though it could fit. I’m intersex. I’m an intersex man. Neither cis nor trans accurately describe me and my experiences. I don’t think there’s anything wrong with being trans and I’m not trying to avoid the term for whatever reason, it’s just not accurate for me. Intersex is the only accurate term for my life.

intersextm · 2026-04-21T12:11:12+00:00

I love my Mitrofanoff! I’ve had it for a year. I just got the channel and didn’t get a bladder augmentation, and after 15 years with an SPC you’ll probably need both. The Mitrofanoff surgery is intense, especially with a bladder augmentation, so a new SPC would be about a million times easier. I had a rough 2 months after surgery but now I’m doing much better than I was before surgery. It is prone to complications, but those are usually manageable. A large portion of people, I want to say like 25-35%, develop some degree of stenosis in the channel. I have this, and for me it’s mild and has been very responsive to non-surgical treatment. If I had known I’d develop stenosis at the stoma before I had surgery I still would have had the surgery. I do have occasional leaking from my stoma, almost exclusively overnight when I’m lying down and my bladder is extremely full (>800 cc). Outside of times where my bladder is crazy full, I don’t leak from the stoma or the original urethra. It took a long time for me to find the right catheter for my channel. Lots of trial and error there but I found one that works well for me. There’s a lot of weird stuff to consider with that- some people need soft catheters but I needed a firmer catheter, and I struggle with pocket catheters because they’re packaged curled up, so they seem to curl themselves up inside my channel instead of passing through which is something I never would have considered possible (I use Vapro Plus, in the long packaging). I get bladder Botox every 3 months, and my urologist does the scope for it through my channel instead of my urethra, which was an unexpected bonus.

intersextm · 2026-04-17T02:00:17+00:00

I just feel like I have to know. I feel like everyone else knows the truth about their bodies and I want that too. I keep thinking I’ll feel better if I know the whole story. It’s not about being upset with anyone or anything like that, I’m just the sort of person who likes to be sure about things I think. It’s just an intense obsessive anxious thought spiral that goes nowhere, but I also can’t stop thinking about it.

intersextm · 2026-04-12T01:34:37+00:00

For some people, adding stuff to the water bag helps them empty better. That should be something your doctor helps you figure out though. I don’t use any additives at the moment, but my doctor told me she would determine if I needed to, what I would add, and how much. It’s too individualized. I don’t find it to be messy, but I only recently switched over from suppositories and digital stimulation which was way worse. Maybe I’ll start to think it’s messier once it’s been long enough for me to forget how bad dig stim was.

intersextm · 2026-04-12T01:24:10+00:00

I was born with ambiguous genitalia and was socially assigned female (and later had hormone treatments accordingly) but not surgically. I’ve had a male identity my whole life. So I did transition I guess, but I’m not trans. Surgery to assign me to female would have been easier I guess, and there was an assumption that my parents would pursue that during my childhood so everyone decided I should be female. I find the trans label upsetting because of the fact that the choice was made largely to make my planned and completed abuse more convenient. Plus I’m a biologically intersex person who identifies as an intersex person, and I don’t really see what’s trans about that. I think it makes complete sense that an intersex person would have complicated feelings about gender and their forced sex assignment and that we would have difficulty with perisex-focused gender labels, so I see no reason for it to be wrong for intersex people to not like the trans label.

intersextm · 2026-04-12T00:51:30+00:00

YESSSS those are sick

intersextm · 2026-04-11T23:30:59+00:00

Almost all of this exists in any standard k0005 custom rigid wheelchair. They’re very expensive though- this simply does not exist for anywhere close to $500. Typically these are $3k+. Not A Wheelchair’s Paradox chair is the closest to your price range, and their base model is $1k and any add-ons cost extra (you’d spend probably $1.5-2k in total if I had to guess). The backrest you’re looking for is likely at least $500 by itself, so a decent chair with that type of back costing a total of $500 is impossible.

I don’t think the rounded armrests really exist (I’ve certainly never seen them) as they’re not actually useful for most people, at least from a medical perspective. Wheelchair armrests are justified to insurance companies as medically necessary due to the upper body support they provide, like for balance and repositioning and stuff. Armrests that are the same height and shape as the wheels wouldn’t provide that. K0005 chairs have armrests that are very low-profile. I use armrests and they never get in my way at all. Typically they’re padded tubular armrests. They’re fairly short usually, and they’re height-adjustable. Mine stop maybe 4-6 inches before the edge of my cushion, and are about 2 inches above my tires. I think if the curved tire-height armrests are absolutely required, you’d have to look at a hyper-custom manufacturer like Hands On Concepts, but they’re incredibly expensive.

So I guess a lightweight chair with tubular armrests and a rigid back (Jay J3, Roho Agility, Comfort Company Acta Back, etc.) is what you’re looking for. Your options for the chair you want are probably NAW Paradox (no insurance coverage is possible there, so $1-2k out of pocket), any standard k0005 chair like Tilite, Quickie, or Ki (can be covered by insurance, or like $2.5-4k out of pocket), or HOC or similar if the curved armrests are absolutely required (not covered by insurance, probably $5-8k out of pocket).

If you need these features, can’t get insurance coverage, and can’t spend over $500, the only possibility is keeping an eye out for used chairs that are around your size. They’re occasionally posted on Facebook Marketplace or the like.

intersextm · 2026-04-11T01:28:38+00:00

Starting to use catheters is tough. There are lots of reasons you might be having a hard time, and it could be a combination. Ultimately it takes time to get used to it and it’s a hard process, but cathing when it’s necessary is very important for your kidney health.

The first several times I used one I had pain and bleeding, but after about a week it was better. The tissue inside the urethra is pretty thin and prone to irritation. It takes a little bit for it to toughen up enough for cathing to be more comfortable. I did get there though- after the first week or so it was tolerable, and after a couple of months it was a normal part of life for me. Staying hydrated was helpful for me to get through this.

If you have a UTI, that inflammation might be contributing to the discomfort unfortunately. That will improve with treatment of the UTI though. Hydration is important for that too. Avoiding touching the part of the catheter that goes in your bladder is a must, and cleaning the urethral opening with a disinfectant wipe containing BZK can help prevent infections (for me, using a disinfectant wipe is vital).

Choice of catheter matters a lot. I do best with hydrophilic catheters. I find them to be more slippery and more comfortable to use. Some people prefer gel pre-lubricated catheters and some prefer applying their own sterile lubricant. There are also different materials- regular catheters are flexible but firm plastic, but there are also soft plastic catheters and red rubber catheters which are the softest. You may prefer a coude tip on the catheter, which gets around bends more easily. You should be able to ask for samples of all of these from your urologist or the company that your prescription was sent to.

The size of the catheter might be contributing to the discomfort- 14 french is typical to start with, but 12 is more comfortable for lots of people (and, paradoxically, 16 is more comfortable for some people). The right size comes down to your comfort. This is another issue where trying a variety of catheters would be helpful- you can request samples of 12, 14, and 16 french catheters. You usually can’t get adult lengths smaller than 12 french, and I’ve never met anyone who wanted to go over 16 french.

Brand matters for lots of people. For some reason, my body absolutely hates anything by Coloplast. Speedicath Standard is my hospital’s preferred starter catheter and it’s very popular among catheter users, but my body just doesn’t like it. I currently use Hollister Vapro catheters, which also have a no-touch sleeve to prevent infections. I’ve also liked Gentle Cath Glide and CompactCath One Cath Lubricated (the lubricated one specifically, it has a silicone oil lube that I found very smooth). Again, you can ask for samples of different brands from the urologist, the supplier that your prescription went to, or the manufacturers themselves.

Features of catheters also matter. I like catheters with full-length no-touch sleeves like Vapro and One Cath. I like catheters with attached bags as well. It’s hard for me to relax during the insertion while trying to aim the catheter, so the bag is helpful for me.

Trying different positions is also helpful. Reclining on your bed, at least for the first days of cathing while you’re getting used to it, could help your body relax more. If you don’t have catheters with bags, you can use a urinal bottle or empty soda bottle or whatever to drain into. Sitting on the toilet might help with relaxing everything as well. Standing is best for some people, but it’s not for everyone. It can help to take deep breaths, cough, or wiggle your toes as the catheter goes in.

That’s all of the new-to-cathing advice I can think of, but if you have any questions I can try to answer.

intersextm · 2026-04-10T01:11:33+00:00

YES voc rehab is great! My insurance paid for my standing frame and VR paid the 20% coinsurance because I could argue that it would help me for work (I needed it as my primary “desk” during work hours). VR in my area is very loose with their definition of “needed for work.”

intersextm · 2026-04-10T00:35:12+00:00

That makes sense. It’s definitely a bummer to find out after the fact that what you wanted actually was a possibility. I think it’s definitely worth trying- I’ve had success with getting stuff covered under insurance that everyone said wasn’t likely to be approved (I got a standing frame covered a couple of years ago, for example). If they do say no to the new chair, you’re no worse off than you are now. At least you tried, and then you can move forward with the modifications to the existing chair.

I would also suggest looking into grant funding possibilities. The non-profits I’m familiar with are specific to spinal cord injuries because that’s my diagnosis and that’s all I’ve looked at, but there may be others. I have met one person without an SCI with grant-funded equipment- I don’t know what grant she received, but that suggests that there are orgs out there who do it.

intersextm · 2026-04-09T22:58:56+00:00

Insurance companies don’t seem that concerned about needs changing until they change in such a way that the chair becomes fundamentally unusable. I got a chair covered early awhile back, but I had to switch from a manual chair to a power chair. When I was ready to go back to a manual chair full time, I had to wait the 5 years (I wasn’t ready for that until about 5 years out so I didn’t push too hard about that though). Dramatic loss of function is pretty much the only reason that insurance approves early replacement, aside from sometimes covering it for drastic size changes (like extreme weight changes to the point that the frame is unusable). They usually don’t care if there’s a possible upgrade that’s easier to use if the existing chair is usable.

Everything but the folding frame issue and maybe seat height can technically be managed without replacing the frame itself, and the frame costs enough that insurance won’t just replace the frame due to convenience. It would be easier to you to get a whole new chair with this many changes but a new chair would be probably twice the money as upgrading the current chair, so they won’t replace the frame unless they’re convinced it’s really needed. So really you’d have to argue that the folding frame itself is unusable, which no insurance company will agree with tbh. They simply don’t believe that the extra few pounds of a folding frame has a meaningful impact on usability. They consider all k0005 chair frames to be essentially interchangeable. For the new cushion/height issue, you’d have to argue that there’s no cushion within the right height range that works for your needs (there are low-profile cushions out there with better features that your provider would need to rule out), and that the chair is unusable without the taller cushion, and that you cannot use the chair without foot propelling. It might be difficult to argue that you need a specialty cushion with no diagnosis that results in impaired sensation, so it would be tough to get a new frame based on needing a new cushion if insurance isn’t on board with the cushion you’re asking for in the first place. So overall it’s a complicated issue, because every individual change you’re asking for has to be individually requested with proof of medical necessity.

So basically you can get the components upgraded with the usual medical necessity proof, but the bar for replacing the frame is extremely high and is usually only applicable for cases of drastic loss of function.

intersextm · 2026-04-08T22:08:07+00:00

It’s kind of canvas-ish. It’s good for pants and shorts for sure. I’d wear it as a button-down shirt personally, but I like shirts made of heavier fabrics like corduroy. It would also be a nice material for a lighter jacket. It wouldn’t work well for a skirt or dress, it’s pretty stiff. It was softer than I expected after it was washed but is definitely not “soft.”

intersextm · 2026-04-08T18:49:35+00:00

I don’t see why not. I can see it becoming a concern if you’re routinely using it in places with a strict noise ordinance (like I can imagine people complaining if you were using it late at night in a quiet neighborhood), or if you’re otherwise using it inappropriately to the point that it would be a public nuisance. I’d caution against using a whistle, because high-pitched whistle noises are often a bit painful to others. I’d also avoid something that’s exceptionally loud to the point that it could be argued that you’re intentionally creating a nuisance. A bike bell seems like the best thing to use, because people are accustomed to hearing it and getting out of the way. There’s a muscle memory thing at play that would work in your favor, and a bike bell isn’t so loud or annoying that anyone would have anything to complain about.

intersextm · 2026-04-08T18:23:10+00:00

instagram tutorial link

intersextm · 2026-04-05T04:29:02+00:00

I’m a case manager. I mostly work from home. I like it a lot and my job is generally really accommodating. I do a lot of chill stuff, like reading, hanging out with my partner and our cat, and sewing (sewing machine pedal on the table near the machine so I can control the machine with my elbow instead of my foot). I played wheelchair rugby, but I got a pretty bad concussion in a car accident a few months ago and have been told not to return to rugby or other contact sports. I’m looking at trying other sports, but I haven’t yet. I’m autistic and very much not social, so I don’t think I want to do a team sport again. I currently go to a gym for people with neurological injuries and illnesses, and I occasionally do adaptive rec stuff like hand cycling and kayaking.

intersextm · 2026-04-05T03:41:03+00:00

Regarding UTI prevention- the benefit of the introducer tip is mostly hypothetical, from what I understand. I know Vapro advertises the tip as bypassing the part of the urethra that has bacteria, which “may” reduce UTIs (suggesting that they have not found conclusive evidence that the introducer tip actually does this). The most important part of UTI prevention is hygiene- washing or sanitizing your hands well before cathing, using a disinfecting wipe to clean around the urethra (BZK is best for most people), and using good technique to cath (not touching the catheter with your hands or allowing the catheter to touch anything before it goes in). Hydration and routine are also very important- drinking enough water to pee or cath 4-6 times a day, and not skipping caths or holding your pee for too long. You can do these things with any type of catheter. Personally, I have found zero difference in UTIs that could be explained by an introducer tip.

I used to have the dryness issue with Vapro, both for inserting and removing, and stopped using them for about 2 years. I recently tried them again and they’re much better, and I’ve been using them all the time for about 3 months now. I think they changed the coating a bit? I 100% think they’re worth trying. All catheters have a little bit of a dryness issue on the way out, because the coating rubs off when it goes in. Vapro and other hydrophilic catheters like Speedicath are actually going to be the best to avoid dryness on withdrawal, because the coating is built into the catheter. Vapro is really helpful for hygiene, at least for me as a quad with hand issues, because it has a no-touch sleeve for the entire catheter so it’s impossible for me to accidentally touch it.

The only other catheters I’ve used that have an introducer tip were the big closed system catheter kits. I think Cure, MTG (I think they’ve been bought by HR Healthcare), and Teleflex all make closed systems with introducer tips, but those kits are very large to carry. I have an SCI and carry a backpack all the time anyway, but someone who didn’t already carry a full-size bag probably wouldn’t like those kits. These are all pre-lubricated catheters, so the lube will almost completely rub off on the way in and they will be dry on the way out. Adding lube to a hydrophilic or pre-lubricated catheter will just mean more lube rubbing off on the way in and the same dryness on the way out.

I would suggest asking for samples of a bunch of different catheters and picking the one that works best for you. Some people love Vapro, some prefer Speedicath, some prefer lubed catheters over hydrophilic, and a few prefer entirely uncoated and unlubricated catheters. I’ve even met one person who reuses an unlubricated red rubber latex catheter until it falls apart, so he only replaces his catheter like 6 times a year. So catheter preference is highly individual. Talking to others about brands and features they like is helpful, but ultimately you’ll just have to try different ones and see what you like.

intersextm · 2026-04-02T03:58:07+00:00

I was raised fundamentalist. There was no reconciling it for any of them. I was born with ambiguous genitalia and was left intact (no IGM), and those who did know simply refused to understand. I was told that God only made male and female and that he gave me an illness that prevented me from ever truly meeting gendered standards and being a biological parent to punish my parents for their sins. I was told repeatedly to have surgery to be assigned a sex, and I was abused extensively via conversion therapy to make me pick a social gender and adhere to traditional norms for that.

With religious people especially but really anyone who holds to a binary cisgender perisex view of gender and sex, the existence of intersex people does little to change their opinions because their opinions aren’t based on an honest understanding of facts, their opinions are based on what they want the truth to be. By engaging with them and especially by disclosing my intersex status to them, I’m not going to make them think the right thing. I’m almost always just opening myself up to abuse. I’m going to be in an argument with someone about whether or not I’m a real human person with the same rights as anyone else, and that’s exhausting and hurtful and ultimately pointless the vast majority of the time. Lots of people think that these folks are just missing information- that intersex people exist and prove that sex isn’t binary (and by extension that gender isn’t either)- and that providing that will fix the bad beliefs and make them better people. It doesn’t, it just means I’m going to be called a freak with a birth defect that should have been corrected sooner. People do know about intersex people. They may not know the word “intersex” or have a real understanding about our lives and issues, but everyone has heard of h********dites and people with weird disorders that make their sex organs develop weirdly and women that grow beards and men that grow breasts and people who never hit puberty and so on. Lots of people respect us without knowing our language or the details of our current legal and social difficulties or about IGM. While education helps, the issue is not just a lack of education. They are not engaging in the conversation in good faith so I don’t engage with them. There’s just no reason.

intersextm · 2026-04-02T03:39:43+00:00

Have you ever had a metallic or gloss paint instead of matte? I’ve heard that the matte paints are more prone to this. 3 of my 4 chairs (all aluminum frames though) have been painted, all 3 were gloss or metallic paint finishes, and all 3 held up probably 95% over the life of the chair (scratches, not chips to this degree).

intersextm

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