Am feeling like I am never going to be pain-free.

[Mainemom]

Hello,
I am feeling very depressed and like I may never be pain free. I was diagnosed about 18 months ago. I have been in some sort of pain for years but it seems to me that the pain that I am in is just getting worse. I don't remember the last pain free day I have had. I have spoken to the doctor and they say that i just need to keep taking my meds and drink plenty of water tha is really all they can do at this poiint.
I have tried self cathing-didn't work
e-stim- hurt more than i thought possible
and when i was disgnosed they performed a hydrodistention
after hat I was pain free for 6 months.
They won't talk about doing that again......I just feel like I am at the end of my rope and am going to hurt for the rest of my life.
Any advice would be great.
Kirsten

[MelissaJ]

Hey. Hang in there, things will get better. It's frustrating I know. I have been dealing with IC for years and I still have issues getting painkillers (I am only 23 and because I am just starting my career and moving around a lot it means a new doctor practically every year). BUt every once and a while you will find wsomeone who is understanding.
I know this website has some great resources. One of those is the IC diet. While I personally don't find my IC affected by diet and can eat a lot of foods I shouldn't be able to, lots of people with IC find following the diet decreases their symptoms.
Also, everyone on this forum is really really super nice and understanding.
Here are a few things that help me when I don't have access to or don't want to take painkillers:
stretch. sit on teh floor with your legs stiking straight out and then bend your waist and reach as far as you can to your toes. I'm not sure why this helps me, but it does. I also spend about 10 or 15 minutes stretching because I think it helps me to relax when I am flaring.
Try a hot bath or you can use a heating pad/ water bottle.
some people find cold works too.
If you have urethral burn, drink a ton of water (just not dusani). It flushes out your system orsomething and dilutes your urine.
Have a nap. that is if you can. Sometimes your body is just telling you that you have done too much and likes to remind you that you have IC.
I hope this helps and that you can figure out what is right for you.

[traceann]

I am sooo sorry to hear that you are feeling horrible and frustrated! :( Have you talked to the docs about what meds you're on and maybe if there's a different combo, etc... I dont really have much advice, and I don't know what all they have had you on, and so forth, but just wanted to send some warm fuzzies your way and tell ya not to give up hope!!!!

Hugs,
Tracey :)

[hoping4acure]

Hi. I wanted to send some warm thoughts your way also :) .

Please, Please, don't give up.....there is hope. I agree with melissaJ. I'm 43 and I was diagnosed 2-1/2 years ago. Read the IC handbook and the IC diet. I found that the diet plays a HUGE roll in my IC. IC can be very frustrating :headbang: and sometimes you do feel like giving up...but don't.

You have to do most of the research (LOTS of RESEARCH!) Don't always rely on the doctors tell you. Find a doctor who is sympathatic I did the hydro's 3 times before they worked for me. My last one was in November. . This site is wonderful...use it OFTEN. You have to believe that you can heal yourself, I feel that makes a big difference, the brain is very powerful, along with lots of prayer.

Try some natural remedies also. I am on Colostrum and I am finding it has really boosted my immune system.

Sending warm thoughts and hugs your way....

:grouphug:

[vm]

If if it were me and a hydrodistension worked in the past, but my uro refused to do one again - I might seek out a second opinion.... ICNDonna has had many, many hydros over the years - so it is a viable option as continued treatment for ICers. If it is something that gave you 6 good months before I would sure pursue it again.

[vm]

Also, do they prescribe you pain meds????

[Mainemom]

My uro won't presecibe pain meds. When talked with them today about the pain I said I really feel like the pain is never going to stop. The doctor said well not everything works for everyone, drink alot of water, and follow the diet. Nothing about the pain but when they talk about pain they tell me to take ibuprofin for the pain .
They also told me that the job i just got done at shouldn't have bothered my IC, because I was up on my feet, it is the sitting jobs that bother IC patients.
So again, I am at a very low point and just feel like there is no light at the end of the tunnel.

[jeanababy]

Was any reason given for not repeating the hydrodistention? I had mine in September and have been totally pain and symptom free until a few weeks ago. My doctor said that some people need them every six months to remain pain free and he will do them every six months if necessary until they don't work anymore. He does wait a full six months between each one. I agree that you might want to find another uro even though I know that can be difficult.
Jean

[vm]

Sounds like you have a uro who is out of touch with how bad IC can be. I would check out your options in terms of other urologists or pain clinics or something. If this guy won't deal with your pain - well, you deserve someone who will. Your pain is real and you deserve relief from it. If your uro doesn't believe that then it's probably time to begin the search for someone who does.

Sounds like there may well not be a light at the end of this particular tunnel leading to your current uro ----- but there is a light out there. I think maybe another tunnel may be the answer - you just have to find it. It's out there. :kissing:

[Mainemom]

Hey,
I am seeing the only doctor in the area that even thinks IC is a really problem. My fear is that I may have to go all the way to Boston to See someone and I am not even sure is that is an option.I guess just am going tohave to deal for a while.
Thank you guys for all your responses.
Kirsten

[Romans8:28]

I know how you feel! I have days where i wonder if I'm ever going to be pain free ! I long to not have to think about my bladder etc. !!! Then I read a lot of your post and see that so many are struggling and I'm not alone! I have a crazy private way of dealing with the pain.., I carry balloons, yes balloons, so anytime I want to have a pity party I can! It may not take the pain away but at least makes me smile!
I am sorry your DR is so not understanding! I am very blessed in that area! Hope somehow you can find a DR that is! Maybe one will move there!~We can pray!

[coopsmom]

I take 2 ditropans a day for the frequency. They make me so Dry I drink and drink and drink and then it is bathroom trip one after another. I have been taking the Elmiron at night so I don't have to put up w/ the sick stomach. I have the urge to go all the time even w/ the ditropan. I cough I urinate on myself, I laugh the same thing and so on. Does anyone have any good advice for me. Plus today I have been in an enormous amount of pain, I have never experienced any pain before as bad as today. Please Help!!! Give me some advice!!!! Thanks

Coopsmom

[Dixiefireball]

i'm so sorry your in so much pain.
I wish you could find another doctor that deals with I.C that will give you pain medicine or maybe get into a pain clinic until you find the right meds to help you remember as we are pain pat. we do have rights!! we have the right to have our pain treated i have posted this before a pain list if you wish i will look it up again and copy it for you. its no big deal. to find it for you again.
i had it saved on my old computer but when we got our taxes this year i got me a new one i felt i was owed one since i had to sale my good one last year and down grade.
but now i got a faster and better one again.
please let me know if you would like a copy of the pain pat. bill of rights all doctor are supposeto go by it or at least treat your pain until they can get you to someone who can.
sending you hugs and prayers
Rhonda
p.s
sometimes a doctor has to know you know your rights remember you hire him he didn't hire you.
you have the right to demand pain mag. care.

[kadi]

HI Kirsten,
A couple of thoughts, just from my own experience...

I don't know how much distance there is between your house & a research hosp or IC specialist, but I can tell you I drive an hour & a half (midday, when traffic is light!) to see my doctor at Stanford! I figure, if I'm seeing someone who really knows IC, I'll be healthier & maybe need to go to the doctor a lot less in general! BUT, I have a local urologist 2 blocks from my house who has agreed to support my treatment at Stanford. He gives me the instills using the formula from Stanford, also checks me for infection & provides immediate help if I'm in a flare. Perhaps you can get some sort of collaboration with an IC specialist (at a research hosp if needed) & a local urologist?

Another thought, ibuprofen flares me up pretty badly. I do better with Tylenol, but even then I need Prelief to be able to tolerate it. If you're taking a lot of ibuprofen & your pain is not improving or getting worse, you might want to see if that's part of the problem...

Also want you to know that it took a long time for me to feel good again. I don't think I had a single day last year without pain, but recently I've been feeling good. I still have IC, but I'm able to do most of the things I'd lost. (Wearing pants, drinking low acid decaf coffee, exercising, driving a couple of hours, travelling by plane, work a full day & have energy to be able to go to the gym afterwards). I have had hours recently where I've suddenly realized I wasn't noticing my bladder at all. And I hope to continue improving even more...

Thinking of you & wishing you better days soon!!!

[Princess of I.C]

Hello,
I am feeling very depressed and like I may never be pain free. I was diagnosed about 18 months ago. I have been in some sort of pain for years but it seems to me that the pain that I am in is just getting worse. I don't remember the last pain free day I have had. I have spoken to the doctor and they say that i just need to keep taking my meds and drink plenty of water tha is really all they can do at this poiint.
I have tried self cathing-didn't work
e-stim- hurt more than i thought possible
and when i was disgnosed they performed a hydrodistention
after hat I was pain free for 6 months.
They won't talk about doing that again......I just feel like I am at the end of my rope and am going to hurt for the rest of my life.
Any advice would be great.
Kirstenwhy won't the doctors consider another hydrodistention? I would push for it if I was you

[ICNDonna]

I honestly think it's second opinion time. There must be another urologist you can see. If you had relief for six months following a hydro, it surely is worth a try to have another. Hydrodistention has been a major treatment for me for all of my 30 years with IC --- I have had more than thirty now --- and each and every time I have had relief for months.

If your current doctor is not willing to work with you to help make you comfortable, it definitely may be time to find someone who will.

Sending warm hugs,
Donna

[coopsmom]

I don't like to take pain meds. I have tried the percocet before and it makes me sick so i don't like taking it. I do though take a 800mg ibpro. every once in a while and it helps some. I have a little boy and if I take a high power med. I can't tend to him. So I guess I will try a heating pad etc... for some releif for now. I can't stand the feeling that I have to go all the time that is what is the worst for me. But, I am putting myself back on my Elmiron someone told me that if I put it in water the powder and take it, it would not make me so sick, I was also told to take it w/ food. So I don't know I think I will try the water method first and then if that doesn't work I will try taking it w/ food. Thank you for the reply!! May God Bless US all!!

[traceann]

coopsmom,
The heating pad I know will help me sometimes when I feel that "gotta go every 5 minute" feeling, and if that ain't cutting it sometimes the 800 mg Motrin will help me, and if that don't do it, lol, I move on to AZO Standard's or Uristat's and that will usually do the trick for me. (Sometimes drinking 1 tsp of baking soda in a big glass of water or a couple Tums help, don't know why, usually that is my burning trick, lol, but it's proven useful for that too, and when my urethra is acting up!)

Hugs!
Tracey :)

[sandyhurdle]

:grouphug: Hello MAINEMOM I have been in pain for about three years. And I remember just recently comming out of denial. I don't like this ic stuff ethier but I can tell you somethings that did seem to releive my pain somewhat. I call it crisis mode because I am in pain every day but some days are really intolerable. This is when I drink lots of water and farina ,jello sherbert, chicken, broth, popsiclces sort of like a bland soft diet. If I do this for about 3 to 4 day I notice my crisis go away. Also if it got really bad I would jump in the tub of hot water you know how much heat feels good to you.And I use a heating pad. It's like I spend those day really nursing my pain. The pain is always there but I believe it can be lifted for good. I know that if I try really really hard to eat from the ic diet and learn all that I can about pain management. Something just will have to give. I believe that we can and will have a life with out the pain of ic. So you hang in there ok. If you are in pain it doesn't matter what time it is I find getting in a hot shower or bath and making my self a cup of weak tea with honey makes me to be able to hold on longer. Also walking or running on the treadmill or any kind of excersize has helped me not to go into a nasty pain flare up. I can feel when it is getting ready to go there espeacially during PMS. I know to make sure I fill up on a lot of fiber. I can't stand being in a flare up with constipated. Hope this message was of some help. Hope you feel better real soon ok.

[rubjen]

hey,just a reminder when taking pain pills ,eat acracker or abit of something so you won't be sick at your tummy. i know you can't eat with the elmiron,try it out of the capsule. we are with you all the way. everyone has different things that help out. you just keep trying until you hit the right stuff.i still have days of pain. at one time i told my hubby i don,t want to live like this anymore he called the uro an low an behold he ordered me a prn pain med.i wonder was it because he is a man?