Bladder issues - are they likely to be autonomic?

[Womble]

I have been having increasing problems with bladder emptying.  I've had what seemed to be hormonal/cycle related problems with emptying for quite a while, but now I'm finding I'm having problems throughout the month.   The thing is, I don't know whether the problems are likely to be autonomic or simply down to my advancing age (46) and having had three babies.

I find that when I go to the toilet, I pass urine, feel like it's stopped, then when I stand up more floods out and I don't feel it happening.  It's usually a reasonably small amount, but for the past few days it's been considerably more.  I have tried double voiding (leaning forward, etc) to try and make sure I completely void and that worked for a while, but doesn't seem to help at the moment.  

Didn't help that it happened just as an enormous spider showed up in the room this morning.  I stood up, thinking I was done, and flooded my underwear and jeans and didn't even realise until I went to pull them up.  Then had to try and extricate myself from my clothes and remove the spider whilst trying my hardest not to flash the neighbours!  That was the final straw and I decided I need to talk to someone about this.

Does this sound like an autonomic/neuropathy like issue or do you think it's more likely typical female/childbirth related incontinence.  (If it helps I have never had any bladder problems, not even minor leaking or urgency, even postnatally and had my last baby almost 8 years ago.  Historically I have always been able to go a long time between toilet trips, even when drinking a lot.  These days I don't have any urgency, never get caught short and am not a overly-frequent toilet visitor, I just have this problem, after I've voided.)

Any thoughts?

 

[MomtoGiuliana]

I had problems with urine retention (I guess opposite problem) when my POTS was severe.  Urologist told me it was due to loss of bladder tone from being so inactive (due to being sick).  I don't know if that explained it or not.  In any case, it did eventually resolve, as my POTS symptoms improved, and I did become more active.  Have you seen a urologist?

[Womble]

I haven't seen a urologist yet, no.  This is the first time I've mentioned it to anyone and it will take a while to get to see one under the UK system.

The problem has actually got worse since I've been more active (after starting Ivabradine).  I'm not sure if that's coincidence or if that means it's more likely to be something structural, rather than neurological.  

I haven't been completely inactive for quite a while.  The bare minimum I do is two 15 minute school runs with my daughter, plus light housework/pottering.  It's been some considerable time since I've been completely bedridden and I didn't have bladder issues then.

[TCP]

Yes, i feel it's an autonomic issue, as the bowel/GI tract, heart-rate, lungs etc are also involved. I have had the same problem. I now double-pee, in so much that I have a wee, then then I have finished, I wait, then lean forward and empty again. I sit there until I feel empty and then it seems to be fine. 

[Rgaff]

Hello Womble. I knew immediately you had to be in the UK when I saw Womble ! I just got back from there visiting  my sister.

I am just turned 47 on Sept 27 so am close to you in age. I too have developed the same. I am someone who sleeps all night and never goes to the toilet. I can drive for hours etc and not feel the need to pee. Until lately. I too have found that I go, then stand up and start again. Just the other day, I went, then got in the shower and it started streaming down my leg. I have a good friend who is also a cardiac surgeon and he has explained that the ANS (Autonomic Nervous System) controls heart rate, blinking, bladder control, digestion etc

I am going for extensive testing in November to the Cleveland Clinic as everything in my world is changing and I hate it. I will report any accurate facts I discover once my visit is over.  Give my best to uncle Bulgaria !!!

[momandmore]

I'm 47, too, and have four kids, and have similar problems develop for the first time over the last year. I also now have the issue of suddenly having to go, completely out of the blue, which can be scary. I'm not sure if that is what people mean by urgency. I don't know if it's hormonal changes or dysautonomia.

My biggest problem which seems dysautonomia related is that I have to go a lot, especially in the morning when my heart rate is highest. It makes me nervous about making plans to go places that require long car rides. I also have to get up at least once or twice before falling asleep and once during the night. It would be really nice to sleep through the night without having to get up to pee.

[shan1212]

My problem is different -- a little trouble with incontinence when I sneeze or do plyometric squats with a full bladder. I discovered something called kegel balls that strengthen your pelvic floor muscles. I am no longer getting up several times a night to pee and I don't have any issues with exercise or sneezes. It also helps in the bedroom.  

I've also read up on pelvic floor health and have discovered that squatting is really good for getting all of your muscles lengthened and strong (squatting down like a small child would playing or people in other parts of the world who use squatting toilets). It's also nice with POTS because it keeps everything close to your heart but you're not reclined so your body is still engaged. I got a "squatty potty" for the bathroom in addition to just dropping down into a squat throughout the day.

Just thought I'd throw these out there because I'd never heard of either when I decided to see if there was anything to be done for my little pee problem! 

[Valleyanne]

I've had dysautonomia all my life. I just didn't realize the 2" thick doc's file was all related stuff until 9 years ago. Every system is affected except respiratory. 

A relatively new issue is not getting a signal from my bladder stretch receptors. The deal is that I don't know I have a full bladder until it's heavy when I stand up. Sometimes my stream is like turning on a faucet; more often lately it's more like draining a pipe.  I can see how that could become retention but so far it hasn't. Damp panties occasionally are the biggest problem. 

[htberg]

My bladder and bowel issues are related to my diagnosis of dysautonomia.  For the last 9 years I've had to self-cath and use multiple means to defecate.  I tried bladder physical therapy and it was not related to pelvic floor muscles for me, although i have retention, not incontinence.

[Womble]

I am so sorry I didn't come back to this thread.  Life had been pretty frantic, as my middle son, who has always had JHS (Joint Hypermobility Syndrome) symptoms, first starting having 'funny turns and collapses' (sound familiar?)  then his joint problems ramped up a notch, before ending up with two dislocated shoulders and an ankle impingement with synovitis all at the same time.  So, all my energy has gone into looking after him, whilst fighting to get him seen, assessed and treated and making sure school send work home.  We're now on track, I think, with a private ortho appointment next week, a referral to Rheums at the local Children's Hospital (who I'm told are pretty good with EDS) in the pipeline and a geneticist appointment at the start of December to hopefully get a proper EDS diagnosis and potentially identify which type (there is some question over classic vs type III/HEDS).  

Thank you all so much for sharing and for all the advice.  I am still having the same problems, no urgency or needing to go more frequently than normal - except overnight, which is new, no stress incontinence or leaking. The longer it has gone on, the more I do think it's probably autonomic.  My pelvic floor isn't in bad shape, I do my kegels regularly with no problems.  For now I'm managing it with double-voiding and patience, as I haven't managed to find five minutes to get myself so much as a GP appointment to discuss it.

With all the appointments and meetings for my son going on and a new round of SEN paperwork and assessments for my eldest at the same time, both mine and my husband's parents are away for a over month, leaving us with no childcare and my husband's job is frankly ridiculous with lots of overnights and working away.  I've also been really struggling with my more usual autonomic symptoms, I think from all the stress and am having to be really careful how I pace myself, because I really can't afford to crash right now.  I was doing so well on the Ivabradine and I suppose I am still functioning, which is unusual for this time of year, but truthfully, I'm really struggling even with it at the moment and a crash is inevitable if things don't calm down soon.  The worst to deal with, practically speaking, is hyperhydrosis of my scalp and two patches on my face, which means I can go from freshly washed hair to lank and greasy in minutes, which is a bit of a problem when I have to be looking smart and capable for all the meetings and appointments for my son. That and constantly ending up in waiting rooms that don't have enough seats, which then means I get dirty looks for not giving my seat up to people who assume there's nothing wrong with me.   I came so close to passing out in the waiting room for xray that my son made me take his chair while he sat on the floor, even though it was him that was having the xray on his ankle. 

[Katybug]

Hang in there, Womble! I'm sorry to hear your son and you are struggling just now.

[Womble]

Thank you.  I keep telling myself, 'one foot in front of the other' and  'onwards and upwards', after all the alternative isn't exactly an attractive option!