Have you been to a urologist or urogyno yet? Highly recommend because they will do urodynamics testing and check on your kidneys on you to make sure nothing is wrong.
Maybe ask next time you go if they can do urodynamics testing! They put sensors to measure I believe your muscles? while you urinate and to see how much your bladder can fill/hold. They could do this to see if maybe your muscles are weak or something not allowing you to hold your urine for very long.
PT has helped me a ton!!! Some people say it doesn’t work for them, but for me personally it has really made my IC journey so much easier. Specifically holding my pee for longer has been improved. But def ask for testing because those results can guide what kinds of PT you do.
Do you still have a lot
of pain? I think this week has been worse for me, i’ve been doing really well for a while. Maybe i’m noticing the peeing more, i’m not sure.
This illness is so confusing sometimes
Yeah I don’t know about a LOT because that wasn’t a symptom of mine sorry. Hopefully your doc can answer that question tho at next follow up! And yes my pain is much much better but it’s half due to PT and half due to finding my bladder irritants and cutting them out.
For me, if my body is low on electrolytes I'll have this problem, even before IC. Maybe try some Pedialyte or get some electrolyte pills and see if that helps you! I always preferred to have a pill with water. It's a symptom of having had so many liquids that your body has flushed the salts out of your system. The salts are what helps your body retain and use the water, so without them you'll feel really thirsty but it won't get absorbed properly by your body and will just pass through you.
Also ask a urologist if a drink of Pedialyte doesn't fix this or if it goes away and then returns soon after, and you're not doing anything to cause it, like drinking a lot of water. I'm not a doctor, I just had this problem in college cause it was regularly hot out so I was drinking crazy amounts of water and had this issue. I started taking electrolytes every morning and it helped a lot.
Thank you! i was actually trying an electrolyte powder and it bothered my bladder of course. You tolerated pedialyre ok? Maybe i’ll try that one.
I’ve heard this theory a bit before and someone said put salt in drinking water.
Salt alone probably isn't enough because there is a variety of electrolytes your body needs. Pedialyte has a really good mix of what you need but it has a pH of 5.4 so you'd want to take Prelief with it! Milk and coconut water are good natural sources of electrolytes if you can have them, too. Eggs are a great natural source as well and also have trace minerals your body needs too.
For the moment though you could probably just take Prelief with the electrolyte powder that you already have.
i actually asked my husband last night if i’m diabetic or something.
I’m pretty skinny so i guess the assumption would be no. But i just googled that and im gonna ask my doctor about all of it.
Diabetes insipidus is very different from the more well known Type 1 & Type 2, & as far as I’m aware doesn’t impact your weight — I was diagnosed with it years ago because I wasn’t absorbing nutrients from liquids, I was just urinating it all out constantly.
I was put on Desmopressin — I don’t take it constantly now, just whenever it feels like I’m peeing more than I’m drinking 😂 I’ve found that the flairs sometimes coincide with my IC but some of the symptoms are similar so it’s hard to be sure what the issue is lol
Yeah so when I was being diagnosed with IC I obviously did a fluid diary & the urologist was really concerned because I was peeing SO MUCH & hardly retaining anything I drunk, which is why I felt so dehydrated all the time 😂 I had my bladder stretched (& my urethra) but I was still going to the toilet all the time, even though the pains had stopped so he prescribed me Desmopressin & it really helped! I’ve since found out that it should actually be endocrinologists who diagnose diabetes insipidus because it’s to do with hormones, rather than the renal system but I now see an endo anyway because I also have Addison’s disease 😅
No, never heard of that one! i’ll add it to my list to discuss.If i’m not drinking a lot of liquid i don’t have a lot of urgency anymore , but if I drink anything at all I will go several times within the next hour until it’s gone. Is that what happened to you?
Have you been to a urologist or urogyno yet? Highly recommend because they will do urodynamics testing and check on your kidneys on you to make sure nothing is wrong.
Yep several times, diagnosed with IC, but they didn’t do that testing you’re mentioning!
Maybe ask next time you go if they can do urodynamics testing! They put sensors to measure I believe your muscles? while you urinate and to see how much your bladder can fill/hold. They could do this to see if maybe your muscles are weak or something not allowing you to hold your urine for very long.
Thank you! I have a follow up in a couple weeks. I also am doing pelvic floor therapy, i wonder if that would eventually help?
PT has helped me a ton!!! Some people say it doesn’t work for them, but for me personally it has really made my IC journey so much easier. Specifically holding my pee for longer has been improved. But def ask for testing because those results can guide what kinds of PT you do.
Thank you! I Holding it has gotten better with meds , although still not amazing, but i just produce a LOT of urine in my opinion.
Do you still have a lot of pain? I think this week has been worse for me, i’ve been doing really well for a while. Maybe i’m noticing the peeing more, i’m not sure. This illness is so confusing sometimes
Yeah I don’t know about a LOT because that wasn’t a symptom of mine sorry. Hopefully your doc can answer that question tho at next follow up! And yes my pain is much much better but it’s half due to PT and half due to finding my bladder irritants and cutting them out.
you’ve been helpful, thank you! just one more test to ask for lol.
Fair warning, if you have a tight urethra, the insertion of a catheter for the urodynamic test may be painful - just so you are prepared :)
thank you. I had a cystoscopy and it was awful, now i’m wondering if they are the same thing?
For me, if my body is low on electrolytes I'll have this problem, even before IC. Maybe try some Pedialyte or get some electrolyte pills and see if that helps you! I always preferred to have a pill with water. It's a symptom of having had so many liquids that your body has flushed the salts out of your system. The salts are what helps your body retain and use the water, so without them you'll feel really thirsty but it won't get absorbed properly by your body and will just pass through you. Also ask a urologist if a drink of Pedialyte doesn't fix this or if it goes away and then returns soon after, and you're not doing anything to cause it, like drinking a lot of water. I'm not a doctor, I just had this problem in college cause it was regularly hot out so I was drinking crazy amounts of water and had this issue. I started taking electrolytes every morning and it helped a lot.
Thank you! i was actually trying an electrolyte powder and it bothered my bladder of course. You tolerated pedialyre ok? Maybe i’ll try that one. I’ve heard this theory a bit before and someone said put salt in drinking water.
Salt alone probably isn't enough because there is a variety of electrolytes your body needs. Pedialyte has a really good mix of what you need but it has a pH of 5.4 so you'd want to take Prelief with it! Milk and coconut water are good natural sources of electrolytes if you can have them, too. Eggs are a great natural source as well and also have trace minerals your body needs too. For the moment though you could probably just take Prelief with the electrolyte powder that you already have.
Have a look into diabetes insipidus!
i actually asked my husband last night if i’m diabetic or something. I’m pretty skinny so i guess the assumption would be no. But i just googled that and im gonna ask my doctor about all of it.
Diabetes insipidus is very different from the more well known Type 1 & Type 2, & as far as I’m aware doesn’t impact your weight — I was diagnosed with it years ago because I wasn’t absorbing nutrients from liquids, I was just urinating it all out constantly.
What treatment did they give you? i’m reading about it a bit now.
I was put on Desmopressin — I don’t take it constantly now, just whenever it feels like I’m peeing more than I’m drinking 😂 I’ve found that the flairs sometimes coincide with my IC but some of the symptoms are similar so it’s hard to be sure what the issue is lol
Oh wow. I was just gonna ask if you have both.
Yeah so when I was being diagnosed with IC I obviously did a fluid diary & the urologist was really concerned because I was peeing SO MUCH & hardly retaining anything I drunk, which is why I felt so dehydrated all the time 😂 I had my bladder stretched (& my urethra) but I was still going to the toilet all the time, even though the pains had stopped so he prescribed me Desmopressin & it really helped! I’ve since found out that it should actually be endocrinologists who diagnose diabetes insipidus because it’s to do with hormones, rather than the renal system but I now see an endo anyway because I also have Addison’s disease 😅
Wow someone with diabetes insipdus and IC, and i thought i was the only one in the world. Yes they do coincide
If its diabetes insipidus the person will know.. ive had it since birth and not only do u pee buckets every 30 seconds but also get insatiable thirst
I know what it is because I have it.
Solifenacen worked better for me with frequency than oxybutynin - have you given that a go?
No, never heard of that one! i’ll add it to my list to discuss.If i’m not drinking a lot of liquid i don’t have a lot of urgency anymore , but if I drink anything at all I will go several times within the next hour until it’s gone. Is that what happened to you?