Hi all, I have had problems with my bladder for about the past 5 or 6 years. My symptoms are loss of sensation to urinate from my bladder (I get the sensation to urinate from my urethra). This hasn't caused any incontinence and I've had tests etc and no problems with pelvic floor muscles etc! Even though bladder sensation doesn't seem to be working, I get a feeling of urgency from my urethra and I never fully empty my bladder so I tend to have to go frequently. I also have an extremely irritating night time routine where I go to the toilet before bed, lie down to go to sleep, and then have to go back to the toilet after about 10 mins to pass a very small amount of urine...I also keep getting urethral inflammation and UTIs. It is such a horrible symptom and it is really weird that I will feel an urgency or sensitivity to urinate and then only be able to pass a very small amount. My bladder has also become quite 'shy' and doesn't work very well if there are other people around and it's very quiet (such as in a public toilet and people are waiting). I have seen two urologists (prior to lupus diagnosis) who both just offered botox injections in my bladder or to self catheterize regularly (no thanks)! They said I've got a spastic bladder. I just wondered if anyone else has these symptoms as I have felt as though I'm the only one for years!
Help with urinary problems: Hi all, I have had... - LUPUS UK
Help with urinary problems
I have same as u. I have to self catheterise. I thought no way I'd rather shoot myself. But I hardly do it at all it's only wen I feel like my bladder is acting up then I only do it once in that day. It's easier than I thought. U just get a pack of throw away tube things that come in their own packets. All u need to do is put it in ur ureathra and slowly pull it out. It drains all of ur bladder and it's so much more comfy. My email if I'm allowed is. Jacnk2103@btinternet.com. I can show u a pic of what they look like. I do mine in my house no one else eg friends need to know. U don't need to take them with u anywhere and there is no bag it is like u are wee in loo extra that's all. If I'm not allowed to give u my email. Reply to this and I will c if I can put a pic up on here or if admin can secretly give u my email. Hope this helps. It doesn't affect my life in slightest and as I said I just sit on loo like u having wee.
Hi jacclaire ,
We would generally not recommend posting your email address on this site because it is a public forum with a lot of personal medical information. In future, if you wish to send your email address to somebody else on this site, I recommend that you do so through the secure private messaging system. If Sheepcoat now has your email address, would you like me to edit it out of your comment?
Hi lock your post as your limiting your replies!
Hi I have not been diagnosed with lupus but I have a neurogenic bladder and suffer with chronic pain. I have abdominal nerve damage and do not get the feeling when my bladder is full the same as you. I self catheterise 4 times a day now. Don't worry about learning how to do it. Your nurse at the hospital should teach you. Hope this helps. It does stop UTI s
Hi Nannynese,
Wow you self catheterize 4 times a day? You must be an expert! I will ask the nurse on my next appointment then in April, thanks so much for your reply and advice. I still haven't got any answers as to why I can't feel my bladder any more. The urologist said I've got a spastic, underactive bladder, but no one has ever said I've got nerve damage and the inside of my bladder and capacity for urine is normal although it is very painful and uncomfortable when I hold my urine for too long. It's so frustrating not knowing why it's like it. What caused your neurogenic bladder and why is there abdominal nerve damage?
I had a laparotomy to remove my ovaries but my left one was embedded in my bowel and adhesions had formed around it after my hysterectomy I had 8 years before., which was causing a lot of pelvic pain and I still suffer with now. The operation went wrong and the surgeon had to call for the bowel surgeons because I was loosing a lot of blood on the operating table. They managed to release all the adhesions and remove my both ovaries but I ended up being in hospital for 10 days with bowel obstructions and bad pain. 2 years later I was diagnosed with post operative chronic pain with nerve damage by the pain clinic.
My word, that sounds awful what you went through, and I suppose it's no wonder you have nerve damage after all that poking about inside and the adhesions, not to mention the operation going wrong and removing your ovaries!! 
It's very strange that I can't feel any sensation in my bladder any more and that the only sensation I get is in my urethra and the neck of the bladder. I never really had any answers from the urologist apart from having a spastic bladder that doesn't work properly but they don't really know why! I was offered botox in my bladder and also the option of self catheterizing but I said no to both, although I think I will do the self catheterizing now as I've had enough.
I have a neurogenic bladder found when had chronic utis acute 3 weekly investigated in my 20's in 1969 .Now 70. Spina bifida was noticed ?
I can't self catherterise because of the pain suspect "congental' cellulitus as also have with the dental .I now have lipo-lymphoedema for which there is no provision caused by after the MI from heart failure symptons ignored ? So need antibiotics if don't want PYURIA/sepsis .I have already had spinal spasicity spasms related but nobody's remit & suspect my IBS [ liquid bowel since 20's has the same origin.
Do they[NHS] want to know? They cut us[ access] first as there is no final diagnosis & no objective research as it is directing the Doctors on statistics.
Getting them to continue established plans for antibiotics is like getting blood out of a stone as the GPs do not stand up to be counted as not observing their hippocratic oath .They blame you & allow their admins to maladministrate the tests causing extreme anxiety as we know the consequences .Even the hospitals block with the dreaded Registrar .
I have even had Doctors/GPs [ teachers] say most Middle aged women get bugs & they don't cause problems.Eh? Is that why all recognised Specialists [ have a directory ] are in the Male Sector.
The structure & function of the NHS leaves a lot to be desired & doesn't make sense as apparently I am costing too much money watching them give the run around [ via admin] to point of MI. ? Is the NHS still not teaching about disability as GPs used to tell me reason needed further Research? If they have Policies of no referrals, No antibiotics No discretion ? What is going on? Are we of a certain age being exterminated ?
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