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Embarrassing continence problem (only ladies please!)

In the past I have taken oxybutinin and solifenacin but these were stopped by my continence nurse as she wanted to see what was going wrong. I’ve had 3 bladder scans; the 1st one said 625ml, the 2nd 145ml and then I went to my 3rd appointment expecting to be taught how to self catheterise but my scan only said 12ml so she didn’t want to show me and said she needed a 4th reading to decide what to do - so I’m left waitiing for another appointment.

In the meantime, I am having small accidents so am using pads in case I embarrass myself but worst of all I’ve started leaking during sex. My husband is great about it but it’s not exactly romantic is it?

Can anyone offer any words of wisdom please. We’re due to go on holiday soon and were hoping to have a very active time!

Have you tried pelvic floor exercises? they might help a bit

I was told not to do them while they sorted out whether I was emptying my bladder properly! So I feel as if I am in a worse state than before I started going to the continence clinic!

Hi, regarding the residue of urine in the baldder after emptying it…my continence advisor said that as I have less than 50ml in mine, that is nothing to be concerned about.

I am on oxybutynin, which gives me about 90% relief from accidents.

I do sometimes leak as i stand up…I call that gravity!

Cant advise on the sex/leaking problem, as we dont do that anymore!

I would think a continence nurse could advise.

luv Polllx

Hi.

I think you need to push for urodynamics tests which show the real problems with your bladder and stress the point that MS makes your bladder behave differently all the time so no wonder your results are so varied. I’ve had botox and it’s fantastic and I’ve self catheterised for 4 years and it’s easy once you’ve practised enough. My bladder is so bizarre that even the urologist thought it was the most crazy thing he had ever seen on the results. I feel so sad for you as I’m sure the sex is pushing on your bladder and then anything in it just wants to escape. I’ve not had it happen but have worried about it so I always catheterise before sex, when I’m lucky to get any-small childrens stop that!!! It’s not fair you have to wait for anther appointment, life’s easy for those who don’t have these problems. I hope you get it sorted soon and PM me if you have any questions you think I can help with.

Take care.

BFx

Oxybutynin and Solifencin are both anti muscarinic medications used for the treatment of OAB (pardon spelling) prescribed together they may contraindicate each other. Without a clear diagnosis (by me) it’s impossible to say what the drugs are doing to your bladder. TWO THINGS…anticholinergics/muscarinic can inhibit bladder output (aka encourage retention due to MS/neurogenic bladder) in that it can lead to atonic bladder. The SECOND thing, MS to me (as advised by my MS clients) can be transient, we equate it to a radio frequency tuning in and out…some days are better than others. When I scan my MS clients I monitor their PVR, discuss lethargy etc and try to establish an overall picture. With disease progressive I do teach ISC or most importantly I familiarise with the ISC procedure so it’s not a huge shock

For the 2nd problem, leaking during sex is common even with non MS people. Trying going before you go (so to speak). Make sure you are relaxed. He could help there. Put a towel on the bed. He understands and sounds like he’s fine with the real you!

Its not surprising, because, most times you are in fact squashing your bladder. Try some new positions maybe?

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My urologist told me that with MS like symptoms bladder issues can come and go so you may be having a really rough few months with leaking, then have a quiet time. I used to get like 10 UTI in a year at one point it was exhausting. I dont know really what turned that tide. I couldnt even be driven 5 miles up the road to car boot without wetting myself.

Hum the only thing i changed was i take an antibiotic now every night, and i take a high dose cranberry tablet. I always go to the toilet when i need too if i dont well its usually leaking for me and a rush. When i go i am there ages. I have gotten up off the loo and realised i was still going, couldn’t even feel that thought i had finished. (i have had scans do hold but not enough to catheterise although to be honest i havent one for several years now).

I cant remember now who told me but i lean forward to pee now, and when i think i have finished i do a gentle rock and roll lol, and believe it or not i nearly always manage to get more out.

I found if i dont do that i end up having to go back to the loo again quicker. My urologist said i had I think its called a nuerogenic bladder. Its very very slow to empty, i remember doing a test i had to pee on a sensor and he said the results was i was way too slow to empty lol. I found i spent more time in the loo so put some cartoons on the inside of my door to have a giggle.

Hum i still pee suddenly it comes from no where but its not as bad, and when i do go to the loo for a number 2 as we call it delicately i find i have to lean backwards. Now i eat so much fruit i should poo through an eye of a needle but oh no not me lol.

My first worse symptoms for me way back were bladder i was so fed up with it, spending so much time in loo, and i would think where on earth does all this urine come from. At night i have to have a commode as i can get up 2 or 3 times a night and its not safe for me to walk to toilet as i have fallen too often. My husband would empty it for me but sadly now he has died i have to try and do it myself and i remember last week it was really full jeez i couldn’t believe it where did it all come from, i was gong in the day. I left it for my PA when she came and she did it for me, as i had this awful feeling i would loose balance and cover my carpets with about 2 pints of my body fluids lol.

That is something though where does all the urine come from at night lol. I dont drink much at night (water), i have one coffee when i wake up and in 2 hours i can visit the potty 3 times, but i started getting fed up and hold it a bit which is disastrous as when i do get up i really have to pee lol.

I drink water in the day, and occasionally i have a ginger beer when i feel sick.

I used to hate going away i remember when we went to the IOW i had to map all the petrol stations as i knew darn well i would need to visit them lol.

I find the bladder fascinating and its been the bane of my life. One little thing grrrrrrrrrrrrrrrr lol.

First thing they said to me was go caffeine free. So coffee (being a diuretic) is out. Don’t even have it when out now and if I do, its wierd cuz I am SO used to not drinking it!!

Quite agree with the going twice thing! and the rocking back and forth! I go before I set off on a journey, find the loos when I’m there…I too have had the “o i’ve finished - left the room and 5 mins later, need to go again” so it ain’t only you!!

I try to drink less in the evenings - use smaller cups - but oxybutin gives you a dry mouth ironically, so I need a bottle of water at night cuz I wake with a mouth feeling like the sahara.

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