Please pray for me. Terrified.
Posted: Wed Nov 18, 2020 6:05 am
Hi,
I've only been having symptoms for two years now but the level of severity and debilitation which came with them has been unfathomable.
I was trying my best to do some type of PT despite the dysfunction but COVID severely set me back and I haven't been able to go to the pool since March. I was going once a week.
I could only shower twice a week, then once a week, and now I've deteriorated so much that I've been having my aides give me bed baths with diaper wipes.
It's only become more and more difficult to urinate and have BMs.
Originally, hesitancy, frequency. Now, those issues plus retention for hours until I go extremely large amounts.
At first, whole bowels emptied out. Was extremely painful & took 1-2 hours but at least it all came out. Now, no matter how many supplements or laxatives I take or what I eat, I can feel my bowels full of months' worth of poop. My anal opening is significantly smaller than it was two years ago and feels like it's somehow slowly becoming smaller and smaller every time I go. I've also become weaker so it's harder to push. There is pelvic bone sticking straight up, not out, blocking my stool from exiting also. When I pass gass, can feel that anus very very small.
It feels like my pelvis is tearing and twisting apart and too small for my body. My spine is also too rigid and both my pelvis and spine are compressed yet pulled/stretched at the same time.
When I try to stand, it feels as if my pelvis is suspended above the normal place for a pelvis but really it is twisted into and under itself in inhuman, abnormal ways.
I also have abdominal adhesions on the exact same side as the smaller left hemipelvis adding to digestion and defecation issues.
I've always had some type of underlying issues because I subconsciously noticed my body wasn't really normal at a young age, but I never really looked into it. Honestly, I kick myself every day for not having done some kind of research sooner.
I realized I had some kind of connective tissue disorder in college after reading an article about it and I believe that's partly the explanation for how my musculature could be so twisted. But, I am also certain I have some type of rare spinal birth defect and tethered spinal cord.
The state I live in has almost no resources as far as pelvic-literate doctors.
A home-health nurse who visited today to take my vitals literally said to me, as I lay contorted in the bed, "The pelvis is a very simple bone. You don't need to travel to another state to see a certain neurosurgeon because doctors can contact other doctors in other states or countries anytime." .....Um....First of all, the pelvis isn't one freakin' bone!!!!!!!!!! This all was in response to me saying how the pelvis is a very complex and underresearched area in medicine and that there are specific providers in different states who people must travel to in order to be heard and helped.
Now, I have just discovered that neurosurgeon I am seeing on Monday has been involved in some very questionable practices likely motivated by financial interest. These practices resulted in deaths and lawsuits.
Every time I talk to my pain doctor for my measly 20-minute appointment slots, he asks "What can I do to help?" yet does almost nothing on his own time to research or look into my case. What would help is if people were more invested in researching if not my diagnosis, at least my symptoms and the areas they are in. I even asked two appointments ago about seeing a surgeon and was told "surgery can't treat x suspected diagnosis."
Now, after a nightmare hell hospital trip where I had an extreme reaction to the supposed "treatment" for x diagnosis, that neurologist has referred me to the neurosurgery unit.
Why the hell did I have to ask multiple times after two YEARS of unending torture to even see a surgeon here?!!!!
The one I tried to see before that through my PCP refused to schedule an appointment with me because my MRIs are not revealing almost any of my issues.
Everyone I try to tell about my extreme issues with bowel movements EVEN WITH soft poop just tells me how "that's why I was supposed to see x doctor to create a bowel regimen." The problem isn't necessarily the bowel regimen, it's my actual anatomy and also adhesions! I think I may need some type of colostomy bag but there's already so many musculoskeletal and neurological issues in that area that I'm not sure how the surgery might affect me.
I'm just treated like a snobby and irritating patient most of the time.
As I continue to be ignored and pushed aside by doctors who don't believe the severity of my case, my body continues to decline and I am honestly terrified that one day I won't be able to pee or poop anymore because that's how twisted I am. None of my reproductive or digestive anatomy feels like it's located in a "normal spot." My stomach sticks out way too far and my scoliotic spine feels unbelievably twisted and likely tethered.
I also keep having odd nervelike sensations in my anal and pelvic area which are like a popping or thousands of strings poking and blocking parts of my rectum and it's as if each side of my pelvis is shortened and twisted and deformed.
And if it comes to regular intermittent cathing, the process is extremely involved and painful so if I eventually end up in the hospital needing to do this, my life will be even worse than it is now.
I have pored through all the possible treatments on here but nothing feels appropriate for my case. I strongly believe some type of birth defect is at play and I have read that if not caught when very young, like an infant, there can be irreversible neurological damage and bowel and bladder issues. It really feels like my spine was twisted and very odd but no one noticed or treated it so my bones and body formed incorrectly because the back left side of my pelvis sticks up above my spine where it shouldn't and wedges diagonally out and upwards at the same time. I'm not sure what, short of a miracle, can make a significant difference in my quality of life now.
I try to eat very small parts of meals throughout the day to help the food digest. But I am never hungry and always bloated full of poop. It feels like parts of my anatomy never fully formed.
I'm tired of clueless doctor after clueless doctor. My nerve involvement wasn't even taken seriously until the second year in. Now, I feel like a guinea pig for a newly practicing neurologist who is trying to help but with all the wrong treatments.
I saw one time that a now retired and beloved Doctor, Dr. Jeremy Weiss, said that his mentor told him one of the most important things to do was to "listen to the patient." If only more doctors could implement this strategy into their practice, how much more helpful might they be.
If you are someone who feels well enough, please please keep me in your prayers.
If you are someone who doesn't, just know that I stand (and lie) in solidarity with all of you. <3
I've only been having symptoms for two years now but the level of severity and debilitation which came with them has been unfathomable.
I was trying my best to do some type of PT despite the dysfunction but COVID severely set me back and I haven't been able to go to the pool since March. I was going once a week.
I could only shower twice a week, then once a week, and now I've deteriorated so much that I've been having my aides give me bed baths with diaper wipes.
It's only become more and more difficult to urinate and have BMs.
Originally, hesitancy, frequency. Now, those issues plus retention for hours until I go extremely large amounts.
At first, whole bowels emptied out. Was extremely painful & took 1-2 hours but at least it all came out. Now, no matter how many supplements or laxatives I take or what I eat, I can feel my bowels full of months' worth of poop. My anal opening is significantly smaller than it was two years ago and feels like it's somehow slowly becoming smaller and smaller every time I go. I've also become weaker so it's harder to push. There is pelvic bone sticking straight up, not out, blocking my stool from exiting also. When I pass gass, can feel that anus very very small.
It feels like my pelvis is tearing and twisting apart and too small for my body. My spine is also too rigid and both my pelvis and spine are compressed yet pulled/stretched at the same time.
When I try to stand, it feels as if my pelvis is suspended above the normal place for a pelvis but really it is twisted into and under itself in inhuman, abnormal ways.
I also have abdominal adhesions on the exact same side as the smaller left hemipelvis adding to digestion and defecation issues.
I've always had some type of underlying issues because I subconsciously noticed my body wasn't really normal at a young age, but I never really looked into it. Honestly, I kick myself every day for not having done some kind of research sooner.
I realized I had some kind of connective tissue disorder in college after reading an article about it and I believe that's partly the explanation for how my musculature could be so twisted. But, I am also certain I have some type of rare spinal birth defect and tethered spinal cord.
The state I live in has almost no resources as far as pelvic-literate doctors.
A home-health nurse who visited today to take my vitals literally said to me, as I lay contorted in the bed, "The pelvis is a very simple bone. You don't need to travel to another state to see a certain neurosurgeon because doctors can contact other doctors in other states or countries anytime." .....Um....First of all, the pelvis isn't one freakin' bone!!!!!!!!!! This all was in response to me saying how the pelvis is a very complex and underresearched area in medicine and that there are specific providers in different states who people must travel to in order to be heard and helped.
Now, I have just discovered that neurosurgeon I am seeing on Monday has been involved in some very questionable practices likely motivated by financial interest. These practices resulted in deaths and lawsuits.
Every time I talk to my pain doctor for my measly 20-minute appointment slots, he asks "What can I do to help?" yet does almost nothing on his own time to research or look into my case. What would help is if people were more invested in researching if not my diagnosis, at least my symptoms and the areas they are in. I even asked two appointments ago about seeing a surgeon and was told "surgery can't treat x suspected diagnosis."
Now, after a nightmare hell hospital trip where I had an extreme reaction to the supposed "treatment" for x diagnosis, that neurologist has referred me to the neurosurgery unit.
Why the hell did I have to ask multiple times after two YEARS of unending torture to even see a surgeon here?!!!!
The one I tried to see before that through my PCP refused to schedule an appointment with me because my MRIs are not revealing almost any of my issues.
Everyone I try to tell about my extreme issues with bowel movements EVEN WITH soft poop just tells me how "that's why I was supposed to see x doctor to create a bowel regimen." The problem isn't necessarily the bowel regimen, it's my actual anatomy and also adhesions! I think I may need some type of colostomy bag but there's already so many musculoskeletal and neurological issues in that area that I'm not sure how the surgery might affect me.
I'm just treated like a snobby and irritating patient most of the time.
As I continue to be ignored and pushed aside by doctors who don't believe the severity of my case, my body continues to decline and I am honestly terrified that one day I won't be able to pee or poop anymore because that's how twisted I am. None of my reproductive or digestive anatomy feels like it's located in a "normal spot." My stomach sticks out way too far and my scoliotic spine feels unbelievably twisted and likely tethered.
I also keep having odd nervelike sensations in my anal and pelvic area which are like a popping or thousands of strings poking and blocking parts of my rectum and it's as if each side of my pelvis is shortened and twisted and deformed.
And if it comes to regular intermittent cathing, the process is extremely involved and painful so if I eventually end up in the hospital needing to do this, my life will be even worse than it is now.
I have pored through all the possible treatments on here but nothing feels appropriate for my case. I strongly believe some type of birth defect is at play and I have read that if not caught when very young, like an infant, there can be irreversible neurological damage and bowel and bladder issues. It really feels like my spine was twisted and very odd but no one noticed or treated it so my bones and body formed incorrectly because the back left side of my pelvis sticks up above my spine where it shouldn't and wedges diagonally out and upwards at the same time. I'm not sure what, short of a miracle, can make a significant difference in my quality of life now.
I try to eat very small parts of meals throughout the day to help the food digest. But I am never hungry and always bloated full of poop. It feels like parts of my anatomy never fully formed.
I'm tired of clueless doctor after clueless doctor. My nerve involvement wasn't even taken seriously until the second year in. Now, I feel like a guinea pig for a newly practicing neurologist who is trying to help but with all the wrong treatments.
I saw one time that a now retired and beloved Doctor, Dr. Jeremy Weiss, said that his mentor told him one of the most important things to do was to "listen to the patient." If only more doctors could implement this strategy into their practice, how much more helpful might they be.
If you are someone who feels well enough, please please keep me in your prayers.
If you are someone who doesn't, just know that I stand (and lie) in solidarity with all of you. <3