Very distressed and feeling I have no options left
Posted: Thu Jul 25, 2019 6:45 pm
Hello everyone, I hope y'all are doing well and your pesky pudendal isn't giving you too much grief today!
I'm reaching out because I'm at the lowest point I've been in a long while. I don't want to (at this stage) go into too much detail about past treatments etc, but I trust it's alright to vent and ask a few questions. I'm just having a really rough time of it lately.
My latest episode landed me in hot water, I was catheterised for a long period of time because my bladder became distended. The urologist I saw was rude, and was angered with me because he didn't have all my previous notes/treatments to hand. He should have this information on the system, so I recalled in detail everything. The hospital, where I saw him, was where I'd had a botched procedure performed previously and one of the consultants that did the procedure still works there, as his senior. I didn't really have a choice in the matter (as to which hospital I was seen in) as I was admitted through A&E and then given a follow-up apt pretty soon after. I wasn't in any state to make choices, read anything or do any research.
I've now received a rather smarmy letter from the urological consultant getting past dates, procedures etc wrong. I mentioned several times that I'd had a pudendal nerve block done in the past, that the nerve can and does impact the bladder function. He wasn't interested. He didn't even include it in his notes. He simply wrote out an incorrect timeline, incorrect results of investigations and said I should be better prepared for my next apt. I'm lost. I'm seeing him again very soon, I don't want to.
I've also seen a neurologist, and the point was to ask for another pudendal block and maybe look at some other options available. Again, this guy wasn't interested and instead told me to get use to being this way forever. And, yes, this is more or less how he put it to me. He said some other really dismissive comments, when I asked questions he skirted around answering them. He's only willing to give me a generalised lidocaine iv, once - not direct to the pudendal nerve. He's said that if I don't make a near full recovery he'll be discharging me.
I feel I'm losing grip. I can't keep going back to my GP and saying 'nope, that guy wasn't helpful at all'. I can tell he's getting fed up. I also don't want to turn down the lidocaine iv, just incase it works even just a bit and even though it's not a direct injection. The neurologist could refer me to have a pudendal nerve block again, even a lidocaine injection into the pudendal nerve, but he won't. Regarding my bladder, I just don't know anymore. I have a follow up apt with this uro consultant soon and I'm really nervous and don't feel confident enough to advocate for myself.
I feel alone. I feel like I've run out of options. I feel like I'm not taken seriously. This has ruined my life.
Does anyone have any practical advice for me, how to proceed with my care or these upcoming apts?
Has anyone else here found a way out?
Has anyone else had to battle with their GP or other consultants to receive treatments?
How do you find the inner-strength to do so?
Has anyone else here had problems with bladder distention and constipation triggering the pudendal nerve?
Has anyone here found a physio that's good on the NHS for PN?
Apparently there are physios who have trained under Ruth Jones who are available on the NHS, is anyone familiar with them or how I could go about finding one?
There's so much more to say and to ask. Right now, this is all from me.
Wishing everyone who is reading this health and happiness. Thanks for taking the time to read.
PS I made some edits, one that was clearly a mistake - I used the wrong terminology 'lidocaine injection' should be generalised lidocaine iv not targeted treatment of the nerve.
I'm reaching out because I'm at the lowest point I've been in a long while. I don't want to (at this stage) go into too much detail about past treatments etc, but I trust it's alright to vent and ask a few questions. I'm just having a really rough time of it lately.
My latest episode landed me in hot water, I was catheterised for a long period of time because my bladder became distended. The urologist I saw was rude, and was angered with me because he didn't have all my previous notes/treatments to hand. He should have this information on the system, so I recalled in detail everything. The hospital, where I saw him, was where I'd had a botched procedure performed previously and one of the consultants that did the procedure still works there, as his senior. I didn't really have a choice in the matter (as to which hospital I was seen in) as I was admitted through A&E and then given a follow-up apt pretty soon after. I wasn't in any state to make choices, read anything or do any research.
I've now received a rather smarmy letter from the urological consultant getting past dates, procedures etc wrong. I mentioned several times that I'd had a pudendal nerve block done in the past, that the nerve can and does impact the bladder function. He wasn't interested. He didn't even include it in his notes. He simply wrote out an incorrect timeline, incorrect results of investigations and said I should be better prepared for my next apt. I'm lost. I'm seeing him again very soon, I don't want to.
I've also seen a neurologist, and the point was to ask for another pudendal block and maybe look at some other options available. Again, this guy wasn't interested and instead told me to get use to being this way forever. And, yes, this is more or less how he put it to me. He said some other really dismissive comments, when I asked questions he skirted around answering them. He's only willing to give me a generalised lidocaine iv, once - not direct to the pudendal nerve. He's said that if I don't make a near full recovery he'll be discharging me.
I feel I'm losing grip. I can't keep going back to my GP and saying 'nope, that guy wasn't helpful at all'. I can tell he's getting fed up. I also don't want to turn down the lidocaine iv, just incase it works even just a bit and even though it's not a direct injection. The neurologist could refer me to have a pudendal nerve block again, even a lidocaine injection into the pudendal nerve, but he won't. Regarding my bladder, I just don't know anymore. I have a follow up apt with this uro consultant soon and I'm really nervous and don't feel confident enough to advocate for myself.
I feel alone. I feel like I've run out of options. I feel like I'm not taken seriously. This has ruined my life.
Does anyone have any practical advice for me, how to proceed with my care or these upcoming apts?
Has anyone else here found a way out?
Has anyone else had to battle with their GP or other consultants to receive treatments?
How do you find the inner-strength to do so?
Has anyone else here had problems with bladder distention and constipation triggering the pudendal nerve?
Has anyone here found a physio that's good on the NHS for PN?
Apparently there are physios who have trained under Ruth Jones who are available on the NHS, is anyone familiar with them or how I could go about finding one?
There's so much more to say and to ask. Right now, this is all from me.
Wishing everyone who is reading this health and happiness. Thanks for taking the time to read.
PS I made some edits, one that was clearly a mistake - I used the wrong terminology 'lidocaine injection' should be generalised lidocaine iv not targeted treatment of the nerve.