ToriTamsin Posted August 30, 2018 Share Posted August 30, 2018 Hi, I have a genetic kidney disease called Cystinuria. It means my kidneys don't put the amino acids back into my bloodstream and cystine isn't water soluble. To make sure it all gets flushed out and doesn't turn into big stones I have to drink 3.5 litres of water per day. My control when I'm awake is fine...though I practically live on the toilet. But ever since the second of two pcnl surgeries I've been wetting the bed. I wear incontinence pads to bed, but for some reason my sheets still get wet. Maybe the pad is to wide and bunches or I move too much... My urologist refuses to even see me. He describes that and ongoing chronic pain as 'unfortunate'. It's really starting to get me down and I'm always exhausted. Although I enjoy reading abdl stories I never imagined this would happen to me. It's all just another reason to be too shy about finding a guy. Link to comment
beallucanb Posted August 30, 2018 Share Posted August 30, 2018 Find a real pain management clinic, every hospital campus has one. They will work with you, unlike family doctors who are looking to rush you out the door in 15 minutes or less. Link to comment
AbabeBill Posted August 30, 2018 Share Posted August 30, 2018 That’s unfortunate. And maybe this is easier said, then done, but you should endeavor to find a new doctor. He should not take such a flip attitude, in regard to your pain. Doctors are sworn to ease pain and suffering, and should not be telling you it’s just, “unfortunate”. I’d do whatever I could to get with some new. Link to comment
ToriTamsin Posted August 31, 2018 Author Share Posted August 31, 2018 I live in New Zealand so accessing certain areas gets tricky. I'm waiting for a referral to go through for a 2nd opinion. Link to comment
BuildaBearBaby Posted August 31, 2018 Share Posted August 31, 2018 I have sort of the same issue, but it's different too. I have what is called nocturnal enuresis. During the day I am fine. I can hold my pee and go to the bathroom normally. But when I am asleep, my body doesn't know how to hold the pee and I pee. I wear diapers at night because of it, so I can kind gather were you're coming from. Sent from my SM-N950U using Tapatalk Link to comment
Guest Posted September 2, 2018 Share Posted September 2, 2018 pads don't have enough protection and don't absorbs enough try using actual adult diapers that have better absorbency and offer more protection and find an adult diaper that has leak guard's and heavy or severe absorbency. Link to comment
Rob110 Posted September 2, 2018 Share Posted September 2, 2018 Try Betterdry diapers they work great for both my day and night time incontinence, I am a side sleeper and I rarely have a leak and if I do my washable bed pad catch’s the leak Link to comment
oldwetter66 Posted November 15, 2018 Share Posted November 15, 2018 Try cloth diapers and plastic pants they keep my bed dry.they last A few years too Link to comment
stevewet Posted November 16, 2018 Share Posted November 16, 2018 I wet the bed due to having diabetic neuropathy. Although I see the continence nurse periodically. I was given several tests and attended several follow up appointments at the local urology clinic. They refered me back to my Doctor and the continence service for help in managing my problem as there is no current cure for my problem. I wear tena maxi slips and plastic pants at night and as I am now pretty much incontinent most of the time I wear tena comfort extra pads and net fixing pants during the day. Link to comment
Baby Girl Sarah Posted November 16, 2018 Share Posted November 16, 2018 On 8/30/2018 at 11:04 PM, ToriTamsin said: Hi, I have a genetic kidney disease called Cystinuria. It means my kidneys don't put the amino acids back into my bloodstream and cystine isn't water soluble. To make sure it all gets flushed out and doesn't turn into big stones I have to drink 3.5 litres of water per day. My control when I'm awake is fine...though I practically live on the toilet. But ever since the second of two pcnl surgeries I've been wetting the bed. I wear incontinence pads to bed, but for some reason my sheets still get wet. Maybe the pad is to wide and bunches or I move too much... My urologist refuses to even see me. He describes that and ongoing chronic pain as 'unfortunate'. It's really starting to get me down and I'm always exhausted. Although I enjoy reading abdl stories I never imagined this would happen to me. It's all just another reason to be too shy about finding a guy. First im so sorry to read about youe problems dear . Sadly with youre particular problems with youre Kidney problems im sad to say Nocturnal Enuresis (bed wetting ) is to be expected dear ?, reg youre still leaking even with protection you need to get better diapers hon. You need better Absorbance ,and i would also ad some PVC /PUL pants over that AND i would also ad IC bed wear and IC mattress cover im afraid Change urologist dear nothing more to say reg this ? Being A AB (As i can only speek for what i am ) is NOT only getting to wear nappies and wet or Poo in them dear its so mush more its a part of who YOU feel like inside and that you would like to go back to the previous life as a baby and the security and easy life from back then. The diapers are just a part of sed package so to say (for those NOT IC that is as sadly i am as well ). You CANT let this stop you from finding guy dear if he loves you he will ACCEPT youre medical condition. Link to comment
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