I am suffering from extreme bladder pain and self catheterising

Thanks for your message Lin. You are so right in every thing you say. I am under a urologist but sadly he is not a lot of help! I am in constant pain due to inflammation diagnosed by cystoscope , but also keep getting some confirmed infections and some when sent to the lab, come back normal, which is always a surprise. I am suffering so badly at present with terrible pain and catheterising is torture. Do you know how they diagnose ic at all?

One of typical problems for those who get diagnosed with ic is having infection type chronic pain and frequency and urine samples showing no infection, though you can get bacterial infection at times along with it, reason why so many can take years even to get diagnosis. Usually when having cystascope, does show inflammation and also can show abnormalities in skin layers, sometimes scarring caused by inflammtion, as your skin heals, but dont think its an exact thing, and some dr,s are not that clued on it.  l guess the urologist got you to catheterise, is that because you cant pass urine normally, did they give you a reason. lve read about self catheterisation, but only had catheters in a couple of times short term, day or so, and l found them so irritating and uncomfortable and got infection after out, it was after csection and thats whens my ic symptoms started, but might have been to do with the op.

There is a c.o.b site with info and advice about bladder probs, l joined them on urologists advice on being diagnosed, luckily meds helped 90percent of symptoms, l,d a pen pal friend and nothing helped her, and she actually battled to find urologist who,d remove her bladder, radical and last resort, some urologists will only do it for cancer, but her quality of life had been very bad a long time, so l and most are lucky meds do help.  Kimmy knows reality of catheterising, and meds to dull pain sound as if that might help,  so hope it does for you, bladder urethra pain is terrible. l was lucky also in getting a good urologist, not just compatent but approachable, helpful, If your isnt helping you could ask for a second opinion, think your allowed that. Anyway hope all the advice helps, and you could check out forum on c.o.b, l think you can even ring for advice and they do have experts for advice, good luck with it.    

Thank you so much Lin, all your comments are most helpful. My bladder went into retention nearly two years ago and have been self catheterising ever since. I suffer from fibromyalgia too. My GPs are great, but my urologist just shrugs his shoulders and says sorry that he can't give me any answers. I feel at my whitts end. It's so distressing!!

Thank you again for all your help. Much appreciated.

hi, When l started with ic symptoms many years ago, there was no net for info advice, and l had a useless gp who kept fobbing me off for years with post op, gyny, hormonal, phycalogical, despite fairly obvious symptoms, he didnt even refer me for many years, yet once l had cystascope it took all of ten minutes, all the years of suffering pain and poor health and affect on lifestyle, affect on partner, young sons, l couldnt get those years back, luckily the gp retired, good job. The cob site, `wee ray of hope` at that time, gave info advice pen pals, as l wasnt unique in waiting years for diagnosis, many gps knew little of ic, so now l always suggest possability of it to those who have symptoms when no bacteria found in sample, might be other reasons but its worth checking

out. Incidentally quite a few with ic also have fibromyalgia, sjorgens, thankfully l havent, but also most have allergy probs, l do have them. 

l can remember the feeling of being at end of tether with it, but did finally

get diagnosis and treatment that helped, hope you do and all. 

Hi Kimmy,

Thank you for replying to my post. I am female and under a urologist as it was two years ago that my bladder just decided not to work anymore. Do you mind me asking what a supra pubic catheter is and if there is less chance of infection? It's so awful suffering this bladder/uretha pain isn't it.

I feel very sorry for you with constant pain in your urethra. It's so debilitating. Have you tried lidocaine cream at all? The instilagel is so stingy and not helpful. There must be some sort of herbal cream that could numb the pain. When my urethra gives me pain, I sit in a hot bath for a while and it helps.

Hi Sam I'm sorry you've had these problems for years now I know how horrible it is going into retention. Can you pass any urine yourself or do you have to isc all the time?

I couldn't isc anymore as it was agony to put in and I just couldn't find the spot. My district nurse then tried to put a long term catheter in which lasted a week with constant pain before I made them take it out, this is when I got my supra pubic catheter in the start of August.

A supra pubic catheter is where it goes directly into the bladder from a whole they create just down from your belly button. I've only had 1 urine infection which is now since I've had this. Because nothing is going in from down below there is no bacteria travleling up the catheter into your urethra. You just need to keep the stoma site clean which is easier as you can see it yourself. I have to say I far prefer having this than isc or long term one. Even though I still get pain down there it's such a relief on my urethra and it can get to heal with nothing being inserted.

I know what you mean with the instilagel being nippy! I'll give that cream a try though as I would try anything to see if it works. Have you had any tests on your bladder or muscles? And do you have a diagnosis? I recently got told I have fowlers syndrome after experiencing some of your symptoms as well. I hope you can get something done as I really do no the pain you are going through and it is hard. Xx

Hi Kimmy,

Thank you so much for the info. I may end up going down that route in the future as I am allergic to most oral antibiotics. It's very stressful isn't it. I am able to wee about 100 mls naturally sometimes, but mainly have to catheterise. It's not nice and very debilitating. Hope your symptoms improve and the cream works for you

Hi Sam

Your very welcome I know it would mean having a constant catheter in but I really would recommend an spc. You can use a valve on it where you can try pee yourself, if you couldn't the you just open the valve it's that simple. I found the operation a bit sore as had a uti at same time but the pain doesn't last long. It might be better for you with getting less antibiotics.

Thank you very much, waiting on a specialist which seems to be taking for ever haha. If you need any more information on anything feel free to ask or private mail me xx