Flare versus everyday life

[amanda.d]

Ok I am new to all this and trying to figure it all out. My doc did the hydrodistention thing and said my bladder held way more than what a i.c. bladder would hold, and was still uncertain I had i.c. at that time. (I bled but apparently normal bladders can when stretched?) So when my biopsy came back it showed inflamation and from there he says he is going to treat me for i.c. He started me on Elavil 20mg at night not quite a week ago.
Most days I expierience some sort of pain/uncomfortableness. Just feel bothered and kinda inflamed. Is this normal? Or am I still flaring? I have urgency/frequency that is controlled now for the most part by oxybutnin 5mg 1x day sometimes 2. I take predso about once a day. I know since all this started when i go to class my uretha area feels so bothered afterward. I messed up wed in my 3 hour class and ate too many halls breezers (seems I had been able to tolerate a few and I knew I went overboard).And felt way bothered last night with pain etc. I took a towl to sit on to help, am getting a cushion soon. I am eating the i.c. diet pretty closley if not 100%. Yet, everyday I feel the uncomfortableness. Is this something I should get used to everyday?
I am also terrified to have sex. I am afraid it will be back like first weeks I didn't know what this was....I am so grateful i found this site. I am trying to read as much as possible.
thanks

[KarenAnne]

Amanda, Hi. I just want to say welcome & you found a great website. I don't know how long ago your cysto/hydro was. You may have a UTI from it. I got one, it's common. So that may be contributing to the way you are feeling. I take the generic of elavil & it helped me so much. Different patients need different doses. If the 20mg. doesn't help, your doctor may increase it at some point. I hope you feel better soon. Hang in there!

[amanda.d]

My hydro was just over two weeks ago. The doc tested my urine last time I was there (a week ago) so I would think I would not have a u.t.i
I dont think sitting in a hard school chair for 3 hours helped. Wondering if it takes a while to "come out of a flare." or if this is going to be my normal day to day symptoms, just some uncomfortable than others.

[amanda.d]

Oh, plus he put me on 2 days worth of cipro after my proceedure.

[Mothergoose]

Everyone bladders hold different amounts of urine or fluid. Different amount if you are awake or sedated.

I was tested and re tested for years for IC and was told repeatedly it was not IC my bladder holds way too much, well after many uros, I now know I have 2 problems one being IC, the other being severe urinary retention, the retention has streached my bladder out so much from constantly not being able to empyty it, so it hold lots of urine, but I constantly feel the urge to go but can not empty.

Why nobody thought to think I might have more than one bladder condition I will never know.

Just glad to have a good uro now.

MG

[NatalieF]

Hi Amanda,

I have been diagnosed with IC for about 8 months now.

My main symptoms are urgency and frequency.

I constanty feel 'bothered' by my bladder and am never sure if i have a UTI of if it's just an increase in symptoms and rarely is there a time when i don't feel 'bothered', but the good news is this feeling has reduced over the past few months thanks to sticking to the IC diet 100% and keeping a food diary to see if there is a particular thing bothering me, and the course of medication i am currently on (Amatriptaline 30g in the evening to help me sleep and Elmiron)
I have only been on Elmiron for about three months so i'm hoping i will see an even bigger improvemet in the coming months.

So hopeully you will see an improvment too, but it may take a bit of time.

Take Care

[roofann]

Hi Amanda!

You've come to the right place!
First of all, I'm glad he is treating you for IC, because I don't think IC bladders hold less than a "normal" bladder. With my cystoscopy, my urologist told me that my bladder could hold just as much as any other. She printed out a picture of my bladder before it was full and then after so that I could see the difference. It was fascinating to me. I was under the impression that the inflammation and redness that occurs after the bladder is filled is what indicates IC, not how much the bladder can hold.

If you haven't already done so, tell your urologist that sitting for extended periods of time is uncomfortable. On the survey I filled out before starting pelvic floor physical therapy that was something I was asked about. So check out some sites on the pelvic floor muscles.

You could be flaring, but there could be some symptoms you are experiencing that you might just have to deal with everyday. That urethral burning- thats something that I have almost everyday, while the bladder burning I only get if I'm flaring or if I've had one of my problem foods.

My suggestions are:
drink a lot of water to keep your bladder at a normal pH,
keep with your IC diet and maybe try taking prelief before you eat (takes out acidity in foods),
watch out for your cough drops,
and start icing!

I use a frozen water bottle and basically put it in my crotch for at least 10 minutes. If anything it'll give you temporary relief.

I hope I didn't sound like too much of a know it all! I really hope it helps you. I'm sorry you're having all of those symptoms and I hope they will go away soon!


As for sex, if its possible, explain what's going on. Ice afterwards, take pain meds beforehand and above all, make sure you're relaxed! Use lubricant that doesn't have PEG in it. My physical therapist suggested that it could be irritating the tissue.

Sorry for the length!
Rachel

[roofann]

BTW, think about trying something like cystoprotek (talk to uro first!) It takes a few months until you start noticing that its working so the sooner you start the better!

And nice work coming up with the cushion idea!

[amanda.d]

Wow...thanks for that info. It's what I am looking for. I am thinking of getting a second opinion. Just for reasons that my doc doesn't seem to have many patients with I.C. and he doesn't know anything about the foods I can or can't have. I had gastric bypass about 2 years ago and I have a kidney stone according to my uro. I read somewher that prelief might aid to the growth of the stone? I dont know I just would feel better maybe if he was more familiar with the condition. He told me a the last appt. that because my biopsy showed inflamation he was going with i.c. even though my hydrodistention had him on the fence....he didn't use those exact words of course. Would ya'll go with a second opinion or another doc altogether. ONce again thanks for all your replies. I dont feel so alienated when I come here.

[roofann]

I'm so happy to help!

Do you have a family medicine doctor, or a general doctor that you see on a regular basis? Or maybe your gyno could refer you to a different urologist. Maybe even just calling different urologists and asking if they see patients with IC would do it. My doctor referred me to the urologist I see because she specializes in IC and female urology. Check for doctors at big universities because I feel like they may be more connected with the most recent studies, too. For people with IC its really important to have urologists that are always staying updated with the newest treatments.

[amanda.d]

At this point I am not even sure if my current urologist doc knows what cystoprotek is....like i said he was unaware of some of the foods on the i.c. list. I THINK it was tomatoes in pizza and he was like, "Is that on the list?" He even told me to continue my reg. diet until we got to the bottom of it. I was like oh no i am not eating any of that unless I am told I dont have i.c.
What do you think of the cystoprotek?
What the heck is PEG? I will have to dig out the bottle from the "special drawer" and check out the astroglide.... lol...
My cushion too by the way was great tonight! Tomorrow though I have a 3 hour class, kinda excited to see if it helps! I think it will just not sure how much.
Today i did call some urologist and ask but some of the receptionist are kinda duh... Hopefully the one office will call me to schedule an apt. tomorrow.

[roofann]

Glad you're calling other urologists! If they give you the "duh," tell them that you are seeing a urologist now that seems to lack the expertise you need and you want the best care for you!!!! Yikes, seriously man? Tomatoes? (haha!)

This list was a lifesaver in case you haven't checked it out yet:
http://www.ic-network.com/diet/2009icdietlist.pdf


Have you checked out the section in the forum where it talks about different meds people have been trying? I wanted to try the more natural stuff first (cystoprotek) because by the time I got diagnosed I had been on so many different medications that I just didn't want any more! It does contain shellfish just in case you are allergic. It takes a few months to start taking effect, but now that it is working I can tell when I miss a dose! Another thing that I rely on is taking my birth control at the same exact time every day. I flare up right before and during my period so my doctor suggested taking BC for 6 months. Once my body stops break through bleeding I'll only have to deal with those flares twice a year. (Yet another thing to think about...)

PEG- couldn't even tell you the long name! I couldn't understand exactly why it may be an irritant, I think its because it is actually a drying agent. My PT said its in most rubbing alcohols. I'd suggest "Slippery Stuff." My boyfriend and I don't have sex often because of my IC, but we've used it enough for me to know that it is okay for my body.

[Mothergoose]

I will jump in here too my pt recommended slippery stuff, it is a little more runny than other stuff but works well for me.

As for finding a uro I got a list of Dr.s who had registered themselves as treating IC from I think the Canadain IC Ass. I assume you can get a list from this site too for the US. I started at the top with a list of ?, for example do you treat IC, how long is your wait list, if I have problems how soon can I get into see you, often you wait for the first consultation, and then after that you don't wait so long, do you do phone consults in a pinch,do you get to see the uro or his nurse at app, if they don't live where you live will they book app and procedures together so you don't have to make multiple trips, well you get the idea decided on what is important to you.

It took a few try's before I found a fit for me, the one I wanted to go to had a years wait list so I booked an appointment with him, and in the mean time I saw a uro who is supposed to be the best in my area, I did go see him, he did some tests said he couldn't help me he referred me to another uro, who also did more tests, she specialized in women with prolapsed urteruses(sp)
She was a waste of time and money. I assume the first guy pasted me off because he didn't want to deal with all my issues, he just wanted to deal with the IC which he said I had and then said I didn't have, that I had retention issues, which is true I do but it did not mean I didn't have IC too.

Luckly my gp was will to try meds I had read about here and I followed the diet, my quality of life improved a lot.

When i finally did get into see the guy I wanted to see he is a charm, listens well, doesn't just try to change everything you are doing, offered suggestions, he wanted to do DMSO which I had read mixed things about, he didn't push it just said he had very good response from it, i agreed to give it a try, it was a real B**** for the first week and then symptoms calmed down for about 3 weeks and then came back. He said i could call him any time i want too, he did not expect me to drive all the way to his office for every little thing, he is 200 miles from my house, he said he would book treatments, or tests when i need them, I would not have to come and be assessed by him first, he said i knew my body well enough to know if I needed any help.

So this took me a long time but I do believe there is a Dr. out there that will fit with you too, just be proactive and get a second opinion.

Hope you find a Dr. who knows about IC it is so important, or is at least open minded enough to learn about it.

Just as a side note the Dr. i used to go to I just loved, he did try to help me but in reality he was not much help. I tried to discuss with him one day how much intercourse hurt and how much the spasms after wards hurt. He told me he had gone to a medical conference and had gone to a lecturer on IC and it's treatments because of me. They told him at the conference that IC did not cause pain with intercourse it must be something else. I knew my body better than that, I knew it was the problem for me. i didn't argue with him i just went home and down loaded a bunch of info about IC and painful intercourse and put it all in a file for him, at my next app I gave it to him and said it was just a bit of light reading for him. It was not too long afterward I changed Dr.'s so I never got to discuss this with him again.

In contrast my new Dr. called me into his office one day and showed me an article he had read on this subject, the article said that there was good response from people using Valium vaginally, and asked me if I wanted to try it.

In my book this is a good Dr. doesn't forget about you the minute you walk out his door.

It has taken a really long time and many Dr.'s but now I have a good uro and gp who are willing to work together, and know what IC is all about.

Sorry I got so long winded but help is out there and if you don't get what you need from the first Dr. try another one.

MG