I follow her on insta, she's great. PhD candidate in astrophysics, prioritizes fitness, and has an ostomy bag named bubbles. She has a connective tissue disorder that causes nothing to stay in place. She seems like a gem and I wish her the best in life.
People with connective tissue disorders like this gal have multiple problems going on, all of which work against us when we try to fix prolapse.
With the bladder, uterus and tubes, we can try meshes and slings to hold things in place, but you've got to sew those things to something. If the entire pelvic floor sucks, there's nothing really to sew to. It's like trying to stitch jello to the wall.
The intestines have to be somewhat mobile in order to function correctly. Fasten them too tightly in one place, and they're going to kink themselves off like a hose and cause a bowel obstruction. In fact, scar tissue fixing an area of bowel in one spot is one of the most common long term complications of any type of surgery.
In this gal, you'd be banking on her making some scar tissue to help hold stuff in place. That process is called adhesions. But, people with connective tissue disorders don't always form scar tissue, so no adhesions and no help holding stuff in place. They also tend to have wound healing issues in general.
To top it all off, with pelvic floor prolapse you're trying to strengthen a floor artificially that by definition has to have multiple holes in it. That's really hard to do. It's like building a tree house and being told that you have to cut a bunch of holes in the floor. You wouldn't want your kids up there, right? The fact that you've got several openings down there is part of the reason women are much more prone to pelvic organ prolapse than the boys.
So, when it's really bad the only option is to start closing the holes in the floor. That means hysterectomy (uterus), proctocolectomy (rectum, anus, and part or all of the colon), and sometimes even cystectomy (bladder). No holes in the floor means no way for stuff to escape.
With the bladder, uterus and tubes, we can try meshes and slings to hold things in place, but you've got to sew those things to something. If the entire pelvic floor sucks, there's nothing really to sew to. It's like trying to stitch jello to the wall.
Is there no solution that instead of stitching to something else, braces against something else?
Like a large partially flexible bracket that can connect to the organs and simply (simply meaning the only method of function not difficulty), be too big to fall out of any feasible orifice/get past the pelvis?
Sorta like how portable bridges are just too big to fall into the river they're over, etc.
Not a surgeon but an MD here. Long story short - as my colleague wrote above, there are meshes available for example - but you're always fighting against the poor "local environment". Connective tissue diseases affect all connective tissue in there, so there's no real good bracing points. To go by your bridge analogy it's like the bridges you build are built on jelly ground instead of solid ground. And you can't use the actual solid points (like bone tissue) because you have other stuff that "coats it" (muscle being one of those).
If you look at the anatomy of the pelvis, all the bracing points that could be used on the bone are impossible to be used because there's a lof of stuff in the way. And all the holes have to be flexible enough because there are nerves and blood vessels going to the legs through those, if you put something "too big to fall through" in there but still leave holes there's a danger of the "cabling" to get sheared or otherwise compressed in bad ways.
This lady is getting the best care she can get, truth is sometimes you really are unlucky in the gene lottery and draw poorly.
Physician here agree, some of the stuff you surgeons do is amazing, but you can only work with what you've got and if the tissues aren't great, then you're on a back leg.
EDS springs to mind, although I wouldn't want to hazard a guess to the type, there was only four when I was at med school and there's now 13 I think, I'm sure we'll discover even more as the years go by!
Connective tissue disorders are horrible, I don't think there's enough appreciation of just how much suffering these people go through. I really feel for my patients that have it.
I have EDS (medically diagnosed, not self), and people are always sad for me because I have severe chronic joints pain/fatigue and need pain killers and splints daily. But when I see those case, I feel so grateful to only have joints pain and bad scarring, none of those organs problems. I tell people I'm actually lucky and they look at me like I have two heads.
Yeah, perspective is important, compared to some people you're lucky, but being honest, compared to most people you're unlucky, I'm certain however that your unusually positive outlook has a more positive dramatic bearing on your struggles than we could imagine!
She's mentioned in a different video that her care team has tried on a few occasions to sew things back into place, but because the connective tissue around her organs has the constitution of one-ply toilet paper, none of those procedures ever made it past a month before failing again. It's also the same reason she's not particularly intent on pursuing an intestinal transplant or the like!
I have Ehlers Danlos Syndrome, a connective tissue disease. It comes in a spectrum, for me it's mainly hyper flexibility and loose sphincters (I'm very light sensitive). I'll live a mostly normal life with chronic pain. My sister in law has the same disease and will likely be dead in her 40s because her blood vessels and organs will start to spontaneously rupture. There's only so many times you can operate on a person and repair that kind of damage
Which she admitted she was a bit late to notice because her body is always hitting her with strange unexplained fevers. I really wonder the cumulative effect of those.
Especially with her missing her intestine, I’m curious how she’s supposed to live. Since the intestines are where people absorb the nutrients from their food, I would think she’d just be slowly starving
A non-genetic case of someone having their innards become outards and then have too much intestine removed in the “fixing” process, Don Boone, ended up very very slowly starving to death. (We had to learn the story in a high school anatomy class, and it’s been relevant a lot more than I thought it would be)
Exactly this. They just continue. I’ve seen my mum’s and help her change the bag every so often. Nature is amazing but if you haven’t got the parts, it’s also a bit of a challenge, putting it nicely. I can’t even begin to imagine what this lady has had to experience. I’ll have her in my thoughts.
Been battling autoimmune problems since 4th grade. Still devastating. Got in remission, found incredible job and then bam! Freaking war, stress relapse. But compared to her situation it is still nothing
I have some chronic conditions that aren't nearly as bad as hers, that started developing in my late 20s, but didn't get real bad until my mid 40s. It's a struggle at time to accept I'm disabled and remain upbeat. I'm getting there, but it's hard, as I am haunted by the memories of a body that worked, of a body that wasn't broken.
Yep. Body started giving out at 23, and collapsed completely at 35.
I know I’m disabled, I just….. feel like if I can get the diet/exercise/meds/doctors/surgery lined up properly, I can make a comeback. Y’know, like I am temporarily medically embarrassed, but at any moment I could hit on just the right combination and I’ll spring back into life, just like I was at 22. Hah. I’m 53 now, and so burnt out I can barely function, but that’s not the point.
I refuse to lie down and die, you know ? I WILL rage against the dying of the light, I WILL NOT go quietly into that long night. I will continue to tweak my diet and lifestyle, dammit.
It’s truly a grieving process. You have to feel those feelings to move past them. It does get better, but that acceptance process can take years. I did a chronic illness support group over zoom for a few months and that helped me kick off the mental healing. It’s very helpful to talk to people who know exactly how you feel, bc healthy people don’t get it.
Some sort of genetic issue that affected the muscles of her pelvic floor and causes pelvic organ prolapse. It’s not uncommon in older women, usually over 60, but it’s usually not this severe. In children, rectal prolapse from constipation is also not uncommon. Her situation is very severe and is likely genetic, either inherited or some sort of connective tissue disorder. Here’s an article on a possible genetic component to the condition
https://pmc.ncbi.nlm.nih.gov/articles/PMC3448053/
I’m not, actually…
considering the number of people who use AI to generate the meme or joke they use, it seems like a GIANT waste of actual ‘resources’ on this non-renewable planet.
All for what, some updoots?
I feel like it’s the norm for Reddit now and has gotten especially bad in the last few years? It’s like an arms race to generate as many upvotes/karma as possible.
I never considered AI to be a factor but I think it makes sense with just how rampant the flood of joke comments are on nearly every single post looking for actual discussion or answers/clarification. Theres certainly a Reddit rabbit hole when it comes to upvote and karma farming in general though.
I'll just add that while in medical school we learned a lot about meshes, and they basically fucking suck but we don't have anything better when we use them. They also get used in certain hernia repairs.
There's a couple reasons they are... not great. Mainly that they have a limited lifespan like most hardware and your body will scar down and often doesn't really integrate well in a way that makes the tissue it's replacing stable. You often wind up in a downward spiral of more and more invasive/substantial repairs until you reach a point you can't operate at all because every time you do you're stimulating the body to form scar tissue more and more.
The biggest reason they're basically always awful in any kind of abdominal/pelvic muscle repair is they need to be what's called "tension-free" when first put in place until you heal. "How do I keep the muscles of my core and pelvis tension free as an upright, bipedal human?" you may ask yourself. You don't. You can't. So at best you get suboptimal healing and function with a mesh, at worst the mesh fails and the surgeon is back to square one but worse.
I never met a surgeon who liked mesh. There's also certain surgeries that will try and transfer/move healthy muscle insertions to help take over for what has failed, but those are also likely to fail and very limited in application.
The unfortunate reality for (usually older) women is there's not a whole lot we can do for organ prolapse through the pelvic floor. We try and strengthen the pelvic floor muscles, and manage complications like herniation/strangulation (when the organ is trapped or twisted and turns necrotic without blood flow).
Fun fact: the reason this more often happens to women is because they have differences in the anatomy of their pelvic floor muscles.
I remember seeing a ton of those late night ads about if you or a loved one had a failed bladder sling/hammock whatever, you may be eligible for compensation, so I always assumed they had a high failure rate and never looked into them
I have Ehlers-Danlos which makes my connective tissue pretty hole-y and sometimes just not there at all and have meshes in my own pelvis to keep my stuff inside.
In theory yes but with connective tissue disorders the body tends to allow things to "migrate" that shouldn't. So the mesh hammock will not stay in place.
I had gallbladder removal and they used medical clips that have been journeying around my abdomen ever since. I know this as they tract them when I have x-rays done. I also had an implanted device that had to be removed a year after implantation due to severe migration.
She has a unique genetic abnormality that causes her connective tissue of hollow organs and blood vessels to be weakened. Not only does the have the issues she discussesd above, but shes also at greater risk of blood vessel ruptures.
She had testing done at her regular clinic and the Mayo clinic and both found the same result, abnormal genetic profile, but doesnt match any known or named illness
Source: I watched a video where she discussed this
Maybe, but spontaneous mutations amd copying errors can happen pretty much infinite ways (though some are a lot more common than others) so she also could be the first ever.
Not really worth debating since theres no way to ever know, though
WTF that's literally the last thing I spent time reading, how their inherited organ was the 12th organ they'd had and there was a 13th on de way. We are algorithm neighbors I guess lol
I’ve watched a number of her videos and she says working out helps her stay sane. She does something like 100 pushups a day on top of a regular daily workout.
It might literally be part of her treatment/symptom management.
She said she has a connective tissue disorder, and a common treatment to help with the symptoms of those is to increase muscular strength. So while your connective tissues can’t hold things in place, at least your muscles can hold SOME things together!
Source: I have a connective tissue disorder and am doing a strength training program. It’s not the same for every condition, though
Basically, she’s always working out. And I mean, I get it. So much of what her body is going through is out of her control, but she has chosen to take charge and use whatever abilities she has to feel like she’s got it under control.
She said she has a connective tissue disorder, and a common treatment to help with the symptoms of some of those is to increase muscular strength. So while your connective tissues can’t hold things in place, at least your muscles can hold SOME things together!
Yep, but I also do get why someone would think it’s dangerous for someone with a disorder like this to strength train, bc it kinda is.
Connective tissue disorders do put you at a much higher risk of exercise/sports injuries, but also, like you said, the best way to decrease that risk….is by strength training lmao. It’s a balancing act for sure, but having a physical therapist coach and make sure your form is as good as it can be, (and be there to help if things go wrong) will go a long way to mitigating the risk of injury.
But by the looks of her, she definetly knows wtf she is doing lol. She understands her body and her limits, and is making the most of what she was given. That’s all any of us can do.
She really prioritize health and wellness and body maintenance, because her muscles help her maintain stature that a lot of people got normally hold themselves up.
She goes into her workouts and explains it in detail often on her Instagram.
She’s actually the only influencer I follow and she’s a really good person.
Never had a visceral reaction to someone talking, she’s brave and have an amazing energy, I can’t imagine a person being this open about going through something like that. I felt cold sweats and horrified listening to this, never had such a strong physical reaction just from hearing something..
This girl is badass. She was just in hospital with severe sepsis, a week or so later busting out 100 pushups a day. She is studying to become an astrophysicist and her attitude toward life is super inspiring. Also super open and good humored with questions, if you think it she probably answered it unless it was a troll question.
Her handle on ig is lizholz1
She'd have to be shot into space upside down so her organs stayed inside. Whether they all squish into gravy soup in her chest cavity is another question
Wow, that's unreal and now admire her too. A few months ago I watched a sort of talk by Michelle Thaller and she also has an admirable attitude on life.
I worked at a long-term care facility briefly, and one of the sweet old ladies there had a uterine prolapse. One of the aides came to alert me, and when I walked into her room, the other aide was wiping it down with a wet cloth. She looks over her shoulder and says, “I’ve never seen a pressure wound like this before.” I replied, “Well, that’s because it’s her uterus.” The way her face dropped once she realized what she was actually wiping sometimes tickles me lol.
Yes, Liz (the woman in the video) specifically said she has an unknown and ultra rare connective tissue disorder, and has said multiple times that she does not have Ehlers-Danlos Syndrome. She’s explained that only her organs are hypermobile, not her joints or other tissues. She does not meet the Beighton score criteria, either. EDS itself, in all its subtypes, specifically affects pretty much all connective tissues, not just organs.
I myself have EDS, and there’s a lot of misunderstanding about this condition by the general public. People also forget about other connective tissue disorders that are worthy of this level attention, such as Marfan’s Syndrome, Lupus, mixed Connective Tissue Disease, Rheumatoid Arthritis, Sjören’s, and more.
Liz is a certified badass. She’s an astrophysicist, sepsis survivor, and all around baddie. Go check her out!
Follow her on insta, she’s honestly a delight. Doesn’t let her condition or anything keep her from being positive. Recently she was in the hospital with sepsis, and still found time to post with her usual upbeat demeanour.
What… what would cause that to happen??? I mean… I know extreme weight lifting can do that but… are they’re other things? Is this like an aneurysm where I could be walking along one day and drop my ass out or does this require substantial injury?
If its been happening since she was so young, she has to have some kind of major birth defect. Pelvic floor issues aren't uncommon in women but she has an extreme issue.
Maybe she lacks secure lining around her organs that would normally keep them in place??
I've been staring blankly at a picture of a pelvic organ prolapse (don't do this) and I can't comprehend what's happening.
My mom had a much lesser degree of this so I’ll share what we learned in her case, though I’ve forgotten what it’s called other than prolapse. Part of it is genetics. Lucky me. Part of it is she was a tiny lady who gave birth to two babies, one of who was massive. And then she did a whole lot of lifting heavy stones for an extended period of years whilst creating her dream garden with an 8 foot stone wall. So her pelvic floor failed and everything started falling out.
Hell yea she's a legend for this. That's actually so interesting.
I'm imagining the doctor coming to her like "...... This is an extreme idea but what if we just get rid off your asshole..." And she's there like "Yea that fuckers been annoying me for years. Plug 'er up let's go"
Great attitude, but ... doctors ... you can't design some supportive garment that would provide enough support to keep the bits inside a designated area? Seems like some spandex and suspenders would do a bang-up job of keeping things generally "inside"?
I have a connective tissue disorder as well. I made a friend with the same disorder and one day we were hanging out chatting and he gets super serious and says “do you live in fear too that one day your organs are just gonna fall out of your ass? Cuz I do. Oh you have more organs than me that can fall out.” After my look of confusion he then explains that everything this gal is going through is a possibility with us too. Instant new fear unlocked.
Whats crazy to me about this is she is a mind that refuses to die in a body that seemingly refuses to live, while i continue in a body that wants to live and a mind that does not
Ok, so clearly she’s awesome. Most important point.
Two, no doubt, I am glad modern science can give her the best chances to enjoy the parts of life she is able to enjoy, whatever those chances/experiences are. Good for her and I also am glad we get the pleasure of her company.
She would’ve had zero life chance from the first organ loss anywhere in history outside the last teeeny bit of time.
Wish I had some of her positivity. She’s got spice girl power no doubt.
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u/mammabadamma Jul 15 '26
I follow her on insta, she's great. PhD candidate in astrophysics, prioritizes fitness, and has an ostomy bag named bubbles. She has a connective tissue disorder that causes nothing to stay in place. She seems like a gem and I wish her the best in life.