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Hi All,
I just had an appt with Matia earlier today, and I brought up that I experience significant urethral burning in the a.m. if I don't wake up in the night and drink water throughout the night. Occasionally I sleep through the night now, but my bladder is never happy in the a.m. if I do that.
She said there is the type of IC in which people's tissues are really not holding any moisture and so we have to compensate by drinking a LOT of water until our tissues are able to sustain themselves on their own. This has always been my issue, even when my IC was in remission for about 10 years, sometimes if I got dehydrated I'd have a little IC attack that would pass if I drank a big amount of h2o.
Matia also said there's another variation of IC in which people find themselves in a lot more discomfort if they DO drink a lot of water and are happier with as little water as possible. This is fascinating to me! I was wondering where other people fall on the water spectrum.
Also wondering, I have been drinking Evian for about 2.5 years now- it's breaking my wallet but I'm afraid to try another kind because I found a lot of relief when I started using it. Is there anyone with urethral burning like me who drinks poland spring or whole foods 365 and does OK with those? Those are the only choices I can find in Maine besides evian.
Thanks! Claire
Sounds like...
Sounds like you and me are the same.... I have to drink at least 1 gallon of water per day... If I don't, I get sooooo dehydrated, my mouth gets dry, like cottonmouth dry, and my urethra will start burining. I need to have water to urinate out, if I don't my bladder becomes very uncomfortable. Everyone thinks I'm so weird because I'm always carrying aroung huge water bottler where ever I go...
As soon as I wake up in the morning I have to drink water. In order for me to go to sleep I drink like 3 bottles of water the 3 hours leading up to bedtime. Which means urinating every 30 min before goin to bed... Even after I get in bed, I lay down for 30 min then get up and go urinate one more time, then I can finally go to sleep. I don't wake up in the middle of the night anymore, but at 7 a.m. I am woken up by my bladder. So at least I sleep for a good 8-9 hours before I have to pee again...
You said you burn in the morning. My time of burning is usually at night, and I am more thirsty in the evening so I drink more water from 5:00 p.m. and on. The morning burns a little, but I burn way more at night. At least this month anyway. Every month has been changing for me now.
But I am definitely one of the extremely dehydrated ones.
Wow, mine is completely
Wow, mine is completely opposite. The more water I drink the more symptoms I have. I do drink a lot because I like drinking water and with my flying I get dehydrated quickly. But I have a strict rule of NO liquids within 2 hours of bedtime. This week I broke my rule and peed 2-3 times before bed, then was up 2 times in the night to pee. I have so much trouble falling back to sleep it's not worth it. Ruins my entire next day. Matia says I hold my water in the wrong places. For example, I have no libido and very little enjoyment from sex because everything is so DRY. But if I drink a glass of water, I have to pee within 20 minutes and feel very uncomfortable until I void. M burning is worst in the early morning after I haven't had anything to eat or drink for several hours. My time correlates to the large intestine in Chinese medicine she says, so it's indicative of a bacterial imbalance there STILL. So frustrating.
I need to drink a lot too...
When I was in remisson fo the past few years, I got into the habit of drinking LOTS of green tea (weak) and water.. and I mean lots. My bladder is huge so I was only going about two/three times er day. It felt much better though if I was constantly sipping my tea/water throughout the day, although I did not realise that that is why I felt ok. I definitely need a alot of liquid. I never even imagined that this was a 'type' of IC. Fascinating.
This fascinates me, I'm not
This fascinates me, I'm not sure if I should be drinking more water..? if I drink alot then I wee more often and the fluid is completely clear - this would tell me I'm drinking too much?? But at the same time, I feel permanently dehydrated.. There seems to be a right amount of water which for me is around 1.5 litres per day, having my last drink before 7pm to prevent too many urinations throughout the night. I'm envious of anyone who does not have to get up in the night, I go after 3 hours and then after 2 and then again after another 2 hours but have to top up with water between my 2nd and 3rd urination to prevent urethra burning - this does not help my insomnia!! I found Evian too strong for me and drink either Buxton or Carrick Glen (which is only 25p a bottle!!) I really feel that my body is unable to contain fluids - it's apparant in my skin ..
I forgot to add, I do worse
I forgot to add, I do worse on Evian and Fiji and better on Poland Spring or Deer Park (I live in NY)....of course at the airports, where I work, you can usually only find crap, or Evian or Fiji these days, which is how I know that those two bother me :-(
Water
I feel better if I drink a lot of water. Usually I drink about 3 liters or more per day. It keeps the urine from becoming concentrated and eases some of the burning. I used to drink Evian and it helped, but in the past two years I have found that Evian is more alkaline than when I first started drinking it. They used to claim that it had a 7.2 pH, but they don't say that on the bottle anymore. I tested it with pH strips and found it to be quite alkaline. Matia switched me to Poland Spring water, and I seem to be doing okay on it. Evian was very expensive, so I was glad to give it up.
Claire, go to this
Claire, go to this site:
www.findaspring.com
They have quite a few in Maine. I go to one about an hr. from me in GA. Matia thought it was a VERY GOOD idea. It is a long drive but she thought the water would be so much better for me then the Deer Park I was drinking. I just reuse the old water bottles I have and store them in a cool, dry place.