dancer65 Posted June 8, 2021 Report Share Posted June 8, 2021 Hi everyone hope you all having an ok day ! so a while back I posted about bladder issues , so happy Cauda pseudo syndrome ruled out but I do have 3 bulging discs but no nerve damage , phew ! Today I saw the bladder nurse and she was very informed about POTS , I was impressed we live in very rural Wales . Conclusion of all tests is overactive bladder she believes this is a combination of hormone issue due to age (how depressing ! ) and full hysterectomy also the POTS and low BP playing a part. Dr prescribed HRT suppositories which have really help with numbness and now got to work on not visiting bathroom every hour so I have agreed to have a go at CBT to help me we also just invested in an adjustable bed so now I sleep with head raised . Since having the new bed my bathroom visits have gone from 3 x a night to once , so nice not to have to keep getting up ! Quote Link to comment Share on other sites More sharing options...
CJ65 Posted June 8, 2021 Report Share Posted June 8, 2021 @dancer65 it’s so good to hear some good news! What a windfall to have a practitioner who understands POTS and to get some relief from the adjustable bed. Thank you for sharing Quote Link to comment Share on other sites More sharing options...
cmep37 Posted June 9, 2021 Report Share Posted June 9, 2021 Wow - that is good news! 3 times a night to the loo is a good night for me - often it's 5! I've been told it's just overactive or irritable bladder too - I feel like I need to go all the time and when I've been I struggle to get my bladder completely emptied. I suppose the vast amounts of fluid I have to drink doesn't help either! Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 9, 2021 Report Share Posted June 9, 2021 @cmep37 - I do have OAB from POTS, so some of the urgency and frequency is explained by that. But I also experience extreme emptying of the bladder when I have adrenaline surges. For example: when I do anything that stresses me ( positive or negative ) I can pee huge amounts every 10 minutes for hours. The loss of fluid is severe, and I always pee more than I could possibly take in. So an increase in adrenaline can cause you to urinate too much and too often as well. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted June 9, 2021 Author Report Share Posted June 9, 2021 Thanks for all the replies. Pistol we talked at length about stress and the bladder, also the addrellin it was so lovely speaking to a nurse who really understood POTS , she totally understood the bad days have a huge effect on the urgency etc Cmpe37 I was told by my GP to stand up and move when I thought my bladder was empty then sit back down and try again and that way I empty properly. I did this on Tuesday when the nurse scanned my bladder and it showed I had emptied fully ! How sad I was rather pleased with myself 😀 cj 65 yeah it’s nice when things are positive I will enjoy it whilst it lasts ! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted June 10, 2021 Report Share Posted June 10, 2021 Myrbetriq a bladder medication helps with nerve feelings in the bladder but also is a mild vasoconstrictor so I've heard from a lot of IC patients that is raises blood pressure and I personally would recommend this medication. My bladder is awful and nobody ever told me it was connected to dysautonomia so I'm still waiting for autonomic help but I think that will help me be able to empty however I'm in pain all the time b/c of IC. I have to follow a very strict diet. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted June 10, 2021 Report Share Posted June 10, 2021 15 hours ago, dancer65 said: Cmpe37 I was told by my GP to stand up and move when I thought my bladder was empty then sit back down and try again and that way I empty properly. I did this on Tuesday when the nurse scanned my bladder and it showed I had emptied fully ! How sad I was rather pleased with myself 😀 @dancer65I will definitely try this - all I was advised to do was wee bent over with my elbows resting on my knees and whilst this does help I'm still not empty 23 hours ago, Pistol said: when I do anything that stresses me ( positive or negative ) I can pee huge amounts every 10 minutes for hours. @Pistolthis is exactly my experience! My brother has nicknamed me Piddles for this very reason!! I get so irritated sometimes that my brain and body can't distinguish between happy excitement and stressed anxiety - and with hindsight it has bothered me since I was a teenager as during an exam I'd have to go to the loo several times which raised a few questions! My GP believes that the urgency and frequency is coming from POTS and the incomplete emptying from hEDS - because my bladder is very stretchy it doesn't seem to contract properly and last year I was told I have the start of a pelvic prolapse (at 41!!) although not bad enough to treat yet... I do pelvic floor exercises religiously as I don't want my nickname to turn into Puddles!! 9 hours ago, CallieAndToby22 said: Myrbetriq a bladder medication helps with nerve feelings in the bladder but also is a mild vasoconstrictor so I've heard from a lot of IC patients that is raises blood pressure and I personally would recommend this medication. @CallieAndToby22I wonder if I can persuade my GP to let me try this - does it make the bladder nerves less sensitive?? Oddly I have the opposite problem with my bowel - the nerves there are not sensitive enough and I often feel not urge to go even when I definitely do!! My BP this morning was 85/72 (I'm in a flare) and a med that helped my bladder issues that also raised my BP sounds really helpful! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted June 10, 2021 Author Report Share Posted June 10, 2021 Cmpe37. The nurse told me when I stand up I should think I of something else such as planning dinner , apparently that distracts the brain and makes emptying better ! Who knew !! I was knicknamed looy at school as I was permantly visiting the Loo 🤣stress defiantly makes it worse . I feel lucky though I never had accident when fainting, thank goodness as I usually faint in the supermarket . just want to add it nice to have this discussion with you all , it’s always interesting to hear other people experiences. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted June 10, 2021 Report Share Posted June 10, 2021 3 hours ago, dancer65 said: Cmpe37. The nurse told me when I stand up I should think I of something else such as planning dinner , apparently that distracts the brain and makes emptying better ! Who knew !! I have had pretty good success with emptying properly if I sing a nursery rhyme in my head while I'm going - it was a suggestion from a friend of my Granny who is in her 80s with incontinence issues. It probably works on the same principle of distraction! Is it sad that because of my health issues I find I have way more in common with people of that age that people my own age?! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted June 10, 2021 Report Share Posted June 10, 2021 On 6/10/2021 at 8:27 AM, cmep37 said: @dancer65I will definitely try this - all I was advised to do was wee bent over with my elbows resting on my knees and whilst this does help I'm still not empty @Pistolthis is exactly my experience! My brother has nicknamed me Piddles for this very reason!! I get so irritated sometimes that my brain and body can't distinguish between happy excitement and stressed anxiety - and with hindsight it has bothered me since I was a teenager as during an exam I'd have to go to the loo several times which raised a few questions! My GP believes that the urgency and frequency is coming from POTS and the incomplete emptying from hEDS - because my bladder is very stretchy it doesn't seem to contract properly and last year I was told I have the start of a pelvic prolapse (at 41!!) although not bad enough to treat yet... I do pelvic floor exercises religiously as I don't want my nickname to turn into Puddles!! @CallieAndToby22I wonder if I can persuade my GP to let me try this - does it make the bladder nerves less sensitive?? Oddly I have the opposite problem with my bowel - the nerves there are not sensitive enough and I often feel not urge to go even when I definitely do!! My BP this morning was 85/72 (I'm in a flare) and a med that helped my bladder issues that also raised my BP sounds really helpful! Well I never feel empty and feel full with very little urine and it helped with that. But it is known to raise blood pressure if you can handle vasoconstriction. You should look up the official website and read about it. Edit: I know it's indicated for OAB but a lot of IC patients get help from it. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 10, 2021 Report Share Posted June 10, 2021 I have Interstitial cystitis and was just diagnosed with Mast Cell Activation Syndrome. Turns out that MCAS causes Interstitial Cystitis. The meds for MCAS have made my IC much, much better. I started having IC symptoms several years before I had MCAS issues. It is possible IC could be a mild, early symptom, even if the IC itself isn't mild. Not sure if this would be true for anyone else, but wanted to pass this along. Quote Link to comment Share on other sites More sharing options...
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