I try to keep this a purely ostomy-related blog--you know, not updating you on my breakfast or minute-by-minute thoughts or whatever inane shit pops into my shattered skull--but I thought I should be honest about my other medical problems so you know where I proverbially "sit" on the scale of normalcy.
I can't remember how much I've talked about having a past UTI and as I'm packing to move my entire life to Canada in three days, don't have the time to look it up, but a year an a half ago, I acquired my first UTi that due to our shittastic health care in the USA, wasn't treated correctly for a long enough period of time with antibiotics. Because of this, it cropped up again a few days after the last measly dose of meds, and I was treated again, in the same paltry unforgivably near-sighted way.
Since then, I have had persistent urethra pain that is akin to have a hot meat-knife stabbed UP into your urethra... that little button you don't even usually notice on top of your Vag.
Out of all my surgeries, out of my accidents and jaw-breaking and even the funny stupid post on ripping our your vag hair... out of every recovery and every pain in my life, out of being crushed by a couple-ton horse even... genitalia pain like this... this kind of pain i live with every day is the absolute worst pain in my life. Nothing has driven me so close to the edge of suicide, has lead me to forget my dreams and consider there was no happiness left for me in my life than this kind of pain. Every waking moment. Even while I try to sleep... there is no medications that can quell this persistent pain. Not gabbapentin/neurontin, not detrol la, not even Tylenol 2/codeine or Oxycontin. Not even alcohol, although out of everything, at least alcohol sort of works better. No... i have left behind my dreams of having children or a job or even having a partially normal life. Every single day for most hours of the day, I am in a "sitz" bath, trying to soothe the damaged section of my body. This makes sex super painful, obviously, and I've never had a sex-related orgasm (I don't fake it with him, but I still don't ever want my husband to necessarily know that. I just don't talk about it) and I've been to every specialist out there. Everyone in the United States. Every Dr who knows about pelvic floor disorder, everyone who has worked with gynecology, every urologist, everyone.. .at the end of my long sessions of testing has shrugged at me.
"Don't know. Could be this or this but doesn't look like it."
Likely not IC.
Likely not paraurethral gland infection.
Likely not anything.
And NOT spasms from your pelvic floor.
Persistant acute chronic pain from damaged nerves maybe?
great. fuck you all .
I had my first Cudal-nerve injection at the clinic for pain management last fall. They put you tummy down on a narrow bed in a surgical suite, and using an x-ray live-time guided imagery above the base of your spine, jam a foot long needle into your Coccyx. I had that done many times over the course of months, but it never worked. I also went into physical therapist after another telling me there was nothing they could do for me.
Then I began having surgeries for my ileostomy.
Yesterday, i had my first pudental injection.
And now Imma tell you all about it.
After a wait of 4 hours for a 2 pm appointment, they finally took me back into the surgical suite at nearly 6 pm, when all the nurses kept bantering to me about was how "overworked" and "tired" they were, and how they wanted to go home for the weekend. The doctor came in, surprised that my hair was red despite it being so since about my fourth year of life when it changed from baby-blond, and snapped at one of his nurses to "get out of (his) damn way."
Oh, did I mention I lay face-down on the table for 45 minutes before he finally entered the room? yeah. fuck you doctor.
With that same foot-long needle, he went in on "exploratory" injection sites, jamming that needle in through my ass-cheeks into this place here:
And he proceeded to jam it in through my ass cheek to inject my nerve! But oops--wrong nerve. So he did it five more times! FUN!
Then they proceed onto the other ass cheek and repeat... as in above photo.
It's better than in the past were they went through the perineum or through the rectum, but it still hurts like those without spinal nerve pain can imagine.
BUT THE BEST PART ABOUT ALL OF THIS!???
It didn't work. The moment we rolled off the lot, after all that time waiting, after all that pain of injections, after all the hopes, I was in excruciating pain... urethrally.
Today I am back to my sitz bath, because I don't know what else to do. This has crippled my life like nothing else, and i still consider my self lucky as I don't have a giant facial tumor ripping apart my skull, and I don't have necrotising fasciitis, or a whole bunch of other horrible tragic and WHY GOD WHY things of that nature...
Trying to keep life in perspective, but if having an ileostomy was my only problem, even with not being able to truely "eat".... I would still count myself the luckiest...
I can't remember how much I've talked about having a past UTI and as I'm packing to move my entire life to Canada in three days, don't have the time to look it up, but a year an a half ago, I acquired my first UTi that due to our shittastic health care in the USA, wasn't treated correctly for a long enough period of time with antibiotics. Because of this, it cropped up again a few days after the last measly dose of meds, and I was treated again, in the same paltry unforgivably near-sighted way.
Since then, I have had persistent urethra pain that is akin to have a hot meat-knife stabbed UP into your urethra... that little button you don't even usually notice on top of your Vag.
Out of all my surgeries, out of my accidents and jaw-breaking and even the funny stupid post on ripping our your vag hair... out of every recovery and every pain in my life, out of being crushed by a couple-ton horse even... genitalia pain like this... this kind of pain i live with every day is the absolute worst pain in my life. Nothing has driven me so close to the edge of suicide, has lead me to forget my dreams and consider there was no happiness left for me in my life than this kind of pain. Every waking moment. Even while I try to sleep... there is no medications that can quell this persistent pain. Not gabbapentin/neurontin, not detrol la, not even Tylenol 2/codeine or Oxycontin. Not even alcohol, although out of everything, at least alcohol sort of works better. No... i have left behind my dreams of having children or a job or even having a partially normal life. Every single day for most hours of the day, I am in a "sitz" bath, trying to soothe the damaged section of my body. This makes sex super painful, obviously, and I've never had a sex-related orgasm (I don't fake it with him, but I still don't ever want my husband to necessarily know that. I just don't talk about it) and I've been to every specialist out there. Everyone in the United States. Every Dr who knows about pelvic floor disorder, everyone who has worked with gynecology, every urologist, everyone.. .at the end of my long sessions of testing has shrugged at me.
"Don't know. Could be this or this but doesn't look like it."
Likely not IC.
Likely not paraurethral gland infection.
Likely not anything.
And NOT spasms from your pelvic floor.
Persistant acute chronic pain from damaged nerves maybe?
great. fuck you all .
I had my first Cudal-nerve injection at the clinic for pain management last fall. They put you tummy down on a narrow bed in a surgical suite, and using an x-ray live-time guided imagery above the base of your spine, jam a foot long needle into your Coccyx. I had that done many times over the course of months, but it never worked. I also went into physical therapist after another telling me there was nothing they could do for me.
Then I began having surgeries for my ileostomy.
Yesterday, i had my first pudental injection.
And now Imma tell you all about it.
After a wait of 4 hours for a 2 pm appointment, they finally took me back into the surgical suite at nearly 6 pm, when all the nurses kept bantering to me about was how "overworked" and "tired" they were, and how they wanted to go home for the weekend. The doctor came in, surprised that my hair was red despite it being so since about my fourth year of life when it changed from baby-blond, and snapped at one of his nurses to "get out of (his) damn way."
Oh, did I mention I lay face-down on the table for 45 minutes before he finally entered the room? yeah. fuck you doctor.
Here are your ass cheeks.
With that same foot-long needle, he went in on "exploratory" injection sites, jamming that needle in through my ass-cheeks into this place here:
Then they proceed onto the other ass cheek and repeat... as in above photo.
It's better than in the past were they went through the perineum or through the rectum, but it still hurts like those without spinal nerve pain can imagine.
BUT THE BEST PART ABOUT ALL OF THIS!???
It didn't work. The moment we rolled off the lot, after all that time waiting, after all that pain of injections, after all the hopes, I was in excruciating pain... urethrally.
Today I am back to my sitz bath, because I don't know what else to do. This has crippled my life like nothing else, and i still consider my self lucky as I don't have a giant facial tumor ripping apart my skull, and I don't have necrotising fasciitis, or a whole bunch of other horrible tragic and WHY GOD WHY things of that nature...
Trying to keep life in perspective, but if having an ileostomy was my only problem, even with not being able to truely "eat".... I would still count myself the luckiest...
Nice Blog, Thanks for sharing. People who find it really difficult to live life normally after Ostomy may also take help from the Ostomy bag that you can wear inside your cloths so that you can wear the dresses of your own choice without any tension.
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