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Hi, Meghan and thanks for your post. :)

I had an MRI of my thoracic and cervical spines in early January but do not know the results still and am still waiting to see a spine surgeon as the one I was seeing left me without telling me so I am not sure if I will ever really know the results as they told me that I could be waiting forever as they had a huge backlog of a hundred or so patients that that spine surgeon was once caring for but has now left behind.

I would have certainly have preferred to practice on a model first before actually doing it on myself as I am just not confident or happy about it at all.

I do not know what that other so-called continence nurse was thinking either and that is why I decided I did not want to see her again as I did not think she was any help or even competent to do it and that my practice nurse at least tries rather than just telling me to go and guess how to do it. I am scared of doing much more harm than good and know this happens to people that do not have the correct care because they too probably be put under the care of these so-called continence nurses that are supposed to show you how to do it properly instead of just sending people away to guess at their own peril. It just does not make sense why they are called continence nurses as they do not do that anyway.

I have heard of a cream that can be applied like a local anaesthetic gel or lubricant that makes it a little more bearable at least. I have heard of pyridium but have never even been offered any kind of numbing, just told that "it will not hurt. You will be fine." I do not know how many times I have been told this by so many so-called health professionals, including this continence nurse but I now never bother listening to them as I just do not trust them as they keep telling me that and when they do it it does hurt! Your doctor sounds so much better than mine. Mine just tell me that I do not need numbing stuff and that it will not hurt and to get on with it!

Just would like to ask this - my urogynaecologist did not internally examine me, only outside. Do urogynaecologists actually internally examine or only externally as he never did anything, except look at me externally?

Does it sting and feel like pressure when you push past the sphincter as I felt this sort of sensation when the practice nurse was doing it and wondered if that was the sort of sensation that it felt like when pushing past the sphincter. What sort of sensation or pain does it feel like when pushing past the sphincter? Is it more like a stinging sensation?

It does seem like perhaps this self cathing is not really the appropriate treatment for me as if it does not give me all night to sleep than really perhaps I should ask to have a proper catheter put on as I would at least get some proper sleep. I just cannot really be bothered to keep getting up just to cath myself as really I would like a good sleep. I too have avoided caffeine and have tried to cut down generally on fluids as I have found it makes it worse for me.

I am not sure if I have endometriosis but have considered I may have it as my mom's sister had it and also apparently the spine surgeon said there is nothing wrong with my back apart from some degeneration and have heard that endometriosis does cause back pain like I get and also sciatica like I also am getting, particularly when I am on my period and it gets so severe that I just am woken up by it and cannot get back to sleep. I would like it investigated just in case as it could well be endometriosis. I too have heard it can cause bladder and bowel problems which does sound like my problem. I have thought about seeing a GI and will ask about it if my urogynaecologist does tests for endometriosis and does not find it.

I have read that any antibiotic that does not enter the stomache itself should be ok and not cause as many problems as oral antibiotics. I was given the antibiotic called MacroBid Nitrofurantoin.

I have not tried to cath myself yet as I am still not confident in doing it and am scared of doing it because it hurts me. I kind of felt the resistance, I think, when the practice nurse did it which is when my mother said that she heard the catheter make a gurgling sound as if like a plug as she describes it. The practice nurse has booked me in to see her again and will do it on a full bladder to then see if it is in the right place. I would think after showing my mother where it goes, she will also show me how to do it and perhaps have me practice in front of her. Though my practice nurse did actually say that to begin with, my mother could maybe do it for me rather than me just do it all on my own as she thought it was a bit much to do just on my own which I totally agree with. My mother does not seem to want to help me with this though. She said I have got to do it on my own which to me feels like I am on my own with this and I do not think I will manage it without the support.

I have been told to measure the output that I do when I go on my own and then also the output from when I cath. I think I would prefer a "hat" to put on the toilet to first measure the output that I do when I go on my own and then measure the output I cath in a jug on my bed. Though I do have a collection bag on the end to make sure it does not go all over the bed.

I found that after the practice nurse had done the cathing, I had a bit of soreness after and also felt like I had to go but it wore off after a day. I was given a medication called Vesicare (Sollifenacin Succinate) which was given to me before my problem was actually diagnosed! Apparently because I had retention I should not have taken this as it warns on the leaflet that it should not be taken if you have retention. I did find that while taking this medication that when I went I could not release it so I decided myself to stop taking them as it made me kind of unable to go even though I still had the urges/full bladder feeling. I will talk to my urogynaecologist about the retention pill and see what he says. When I spoke to his colleague registrar he said that he could not give me any pills or medication as it would make my situation worse and the only main simple first line solution was to self cath or try an electronic stimulator that they implant into you or other options which he would not discuss there and then. I drink mostly water and milk and other similar things. I will ask for the numbing cream that is applied externally as it will probably have less side effects than oral.

I have read that sometimes the ingredients in the cold and flu remedies can make bladder problems worse or start them anew. I have also heard that antihistamines can too. I used to take a migrain prevention tablet called Sanomigran (Pizotifen) which contained antihistamine and often wonder if that had something to do wih it so came off them and my symptoms are still the same.

I have read that if spine issues are left for more than a few months the damage to the nerves can be permanent which is why I am worried about mine too as I have remained waiting to actually get some answer for 3 years and a half now for my spine but still do not have an answer that I actually trust. I am extremely dissappointed in that spine surgeon that left as he did not even bother to note it and shrugged it off even though I have read that a back problem and bladder problem together is a red flag warning and is a medical emergency. He could not be bothered to even tell me why I had it which I think in my opinion is appalling which is probably why he left. I am not exactly confident this problem will be resolved more quicker or permanently as he (urogynaecologist registrar) is not sure on the exact cause and has admitted that. I, in my opinion, think I need more tests to diagnose the exact cause rather than like they have where they have literally guessed after one test and prescribed a treatment which may or may not work. They are only trialling it on me. Though because I am not getting the appropriate care and support from all these people I do not think I will do very well and feel it should not be me that has to treat myself as I do not see the point in that if they are the ones that are supposed to be looking after me. I am not a doctor or a nurse. I do not know how to perform clinical procedures such as cathing and refuse to do so unless adequetly trained professionally. They are the ones that should be helping me to get better, not sending me away to treat myself. That is one of the most dangerous things they could ask!

I did not find that any of the medical people I saw seemed very sympathetic though. The only sympathetic medical person I have seen was the practice nurse. Perhaps this is because they have to be? I really do not know. I much prefer her to any of the others I have seen.

I cannot do the things I used to when I was younger due to my bladder problem and this does get me down and does certainly depress me a lot at times but I just keep it in as there is nothing I can do about it. Sorry to hear about your son's health problems.

It feels better just to have someone that is there when you need to ask something or want to talk about it in general.

I thank you once again for your support. :)

Many thanks

P.S: I think them smileys must have somehow got a glitch! :)

Kind regards

Niad





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