Why do some IC patients stop trying?

[icnmgrjill]

I want to take a moment and share a phone call I received yesterday from an IC patient. She called to find out if there were any new treatments on the horizon... saying that she was very depressed and tired of being in pain. :help: But as we talked, I was stunned to discover that she had only tried one treatment (i.e. Elmiron). It worked for her for three years.... but then she had some side effects and had to stop. But, from that moment on, it appears that she hasn't tried any of the new therapies... including something as simple as hydroxyzine.

I had several points that I tried to make with her but the biggest was "Why are you worried about future treatments when you haven't even begun to try all of the new therapies that have emerged in the past five years. From antihistamines to rescue instillations, there are so many things that should try that research shows can help." :hmm:

Her answer focused on her fears. Her fear of pain. Her fear of failure.... an overwhelming fear of trying anything. Yes, there's always some degree of risk.. which is why we have research studies. But there is also GREAT HOPE, especially when we those same studies that PROVE that these therapies can reduce pain. I can't imagine what my life would be like today if I hadn't tried Vistaril, which eliminated most of my symptoms and gave me my life back. It would be so much sadder.

One thing that she and I shared are struggles with anxiety. Back in those early days for me, I also was very afraid to go to the doctor and, more so, was afraid of the pain. But, I finally looked at myself in the mirror and said "I suck at this. I have no skills to handle the pain and I don't want to live in fear anymore." Just days later, I found an anxiety management class at my local hospital that changed my life for the better and helped me find my courage again... including the courage to try new therapies. I also talked with a counselor! I really needed help and finally admitted it to myself and made that phone call... embarrassed but grateful none the less to finally share my struggles with someone who would listen to me and care for me.

So, if your IC is out of control and you are suffering, don't sit in silence at home alone. You can ... and you must .... keep trying. Believe in a good future for yourself! At a minimum, make sure you've tried the basics (bladder coatings, antihistamine, antdepressants). Remember, if one coating for worked for you but you can't keep taking it... there are other coatings that may also work for you. Lots of other coatings!

Have a pelvic floor evaluation to make sure that your muscles aren't causing some of your symptoms. If you're still not happy with your progress, consider the newest therapies... such as rescue instillations or botox. Patients who can't afford those can still try the over the counter supplements of Cystoprotek, etc.

Remember, too, that pain is a two way street. It's not just about using medication. It's about you honestly assessing your abilities. If you SUCK at stress management, then go take a class to give you better skills. If tension is an issue, then a relaxation class can help! Relaxation tapes, used daily, can help keep muscle tension from building and adding to your pain. Meditation, hypnosis, heat, resting.... there are so many things that are worth trying!

Please don't let fear control your life and your future. Have faith that you can live normally and that you will live normally. You're just on a journey... and it's up to you to do the work now to learn about what your treatment options are... to have the courage to call your doctors.... to have the courage to commit to a therapy for a reasonable amount of time (i.e. this means... don't quit week after a week unless, of course, you're having problems with side effects)...... and, hopefully, find relief as thousands of IC patients have done in the past!

Jill

ps.. I won't even harp on diet. If you're drinking one cup of coffee or soda each day, then you're part of the problem! Stop irritating the bladder, would ya?? :cussing: Your job is to soothe and protect the bladder instead! Treat it kindly! :kissing:

[purpleviolet]

I think IC is scary. Not only the pain from the disease itself, but the potential pain from procedures and just fear of the unknown. Also its confusing and discouraging. How many trials have we've seen that basically disproved the study substance? I know, because I participated in one myself (RTX) and underwent a lot of pain, only to see it fail. There are many many remedies, that work only somewhat, and some of these remedies have side effects. Are we supposed to take them the rest of our lives? No one answers that question. So sometimes, I can understand if someone is just a bit paralyzed and doesn't know what to do next.
I like reading the posts because it is comforting to see others like myself. However, I think we all are looking for concise information on what works. How do we find it on your website? We all can't read through hundreds of posts or search for something that we don't yet know the name of! I've mentioned remedyfind.com as a good site that lets the public rate remedies, and I believe you are listed on their side bar but why don't you mention them? On that site,it's so easy to see what's working/not working for people and the more input they have the more accurate will be the results. I even told my doctor about it.When one is looking for something to try first wouldn't someone want to try something that seems to be helping the most people? Wouldn't that help someone who is "paralyzed". So about your site, which is wonderful in its own way - why not
add a few more categories of remedies (and take out the old ones like RTX!) and establish some guidelines as to where info goes. For instance, I am taking Singulair and it seems to be helping but where do I enter the post? Under anti-histamines? Under pain management? Under success stories? Under alternative treatments? Under flare coping stategies? And if it or anything else is so successful couldn't that good info be buried after a few days of posts? Especially, how would someone new to the site find out what works? You have thousands of posts! So if you are not willing to create a rating system on your site then please mention remedyfind.com on a sidebar. Note: I have nothing to do with them and I don't know why the site exists so I'm not pushing anything except a way for us to help each other. Thanks for taking the time to read this long message and I hope you understand where I am coming from.

[Portia17]

Well in my experience and some of my friends as well, we have tried bladder treatments, meds, diets and etc and still unable to work or even care for own house or self sometimes.

So, we stay on the meds, do the diets, and go for treatments and I still want to know why I even bothered.

Just my opinion

[Dixiefireball]

Very good post Jill

I tried elimron for i believe it was almost two years i had many side effect and showed little improvement so i had to give it up. crazy me went without anything coating my bladder for about six mths i was afraid to try the heparin treatments or an dmso because the first few gave me so much pain.

i finally also looked at myself in the mirror and said what am i more afraid of pain forever or trying new things toget better.

that is when i said YES i will try the home heparin treatments and boy i'm glad I did i had a great 18 mths of remission and know i will get it back again. its very important with an ic bladder that the bladder has something to coat it.
sorry to say not one thing works well for everyone but there is something out there that will coat the bladder (which an ic bladder has to be coated) I'm so greatful i started these treatments at home. don't get me wrong i still have pain and have to take a pain medicine to help it but i was in a lot more pain when i didn't have something coating the bladder.

Thanks for a great post Jill
Rhonda

[kelly McC]

I just wanted to say for me learning to advocate and educate myself all I could is what finally helped me.
I wanted so many times to just give in thinking this was how my life was going be. Crying depressed and constantly in pain.
I would think this cant be right or normal why me and finally I started to search the internet read books on IC found I was not alone and there was alternatives.
I found some treatments to help others didn't it took awhile and alot of faith
but my treatment plan now is helping. I still have bad days but far fewer.
I often read about other treatments or new things I hear about and discuss it with my doctors I figure together we can decide whats best.
I know we are all different but in so many ways the same . Not all treatments help everyone and we all have different symptoms but were all in it together hoping for a cure someday soon .We have the support of eachother offering hope, and help . I learned so much from this wonderful place had I not found it I may still be curled up on my couch who knows but I am thankful for this place and somewhat excited that I can be apart of helping others in the years to come. Hopefully others will not have to go through what we did. Quicker diagnose,knowledge for doctors,nurses,and hospitals and hopefully a cure.I share my story with everyone I meet and spread the word of IC . I know its not easy but dont give up hope and advocate for yourself. You know yourself best.
Kelly

[gwynnie]

great post jill..
you have a great point there..
now i do feel i have a lot to reflect on myself..
i have not tried all the treatments and i am always complaining
and i even feel like giving up..

my condition is terrible now, i have pain 24/7 n i cant sleep more
than 1.5hrs at a go.. its really affecting my life so much ..
i know there are many thing i could do n should do but did
not try yet.. and your post did make me wake up..

BUT, i have to say that its really very tedious as i am from singapore,
i came to new york in search for treatments and drs , i have been here for a yr,
all alone, using up almost all my money and without much advancement..
its really upsetting and its not that i dont want to try but WHO wants to
help.. i cant ven find a good dr and all the medical expenses are so
expensive and i am in so much pain i cant think straight,,,
opps better stop...this is beginning to sound negative again.. hee

[sarah2109]

hello jill,
i was really upset when i read your post, i thought of that poor lady if she was to read what you have said, if it was me i would feel hurt. Not very one has the same opitunities, i live in the UK and we have to wait 18 months to be seen by a Uro, and some times more. i have had |IC for 2 years and only been offered DMSO, which i refused due to my own reserch and knowing how sensitive my bladder and body is.

many days i get up wanting answers even now and we all get bad days and just want someone to talk to, i am sure you have been there yourself. i would love to beable to come over to the states and get better treatment but i cant afford it plus i have 2 small children. i have done lots of reserch over the last few years and my dr said i know more about IC than him lol... i know all the treatments there is to try but unfortunatly all i have been offered is DMSO even though i have told them about other treatments.
i have been to three Uro's and had all the tests and biopes i have pin point bleeding a very small bladder and lots of blood in my urine some days better than others. people may think i am just sitting here not doing anything about my IC well they are wrong i have written letters to everyone important and no replies i have given lots of articles to my Uro but no other treatments, i chat on here try and help others but still i am ill.

i am sorry if i have offended you but the post i thought wasnt very nice.
also i am sorry about the spelling i am not very good at it .
also isnt the phone calls confidentail?, as after reading that i wouldnt want to call for help!!!!!
best wishes
sarah

[yvette]

Dear Sarah: Jill never gave out specifics about the caller, so no privacy issues were violated. Second, I've spoken to Jill many times and by now I know what her voice sounds like (her tone and manner)...reading it may seem like she's scolding....really she isn't. :)
She is however being firm and being honestabout what a person can do to empower themselves and not let fear chain you down. God knows I've been there...I was afraid to do anything, or try anything...the fear it may make it worse is CRIPPLING...and that was one point Jill was trying to make: you can't make anything better without trying.


On another point you've made I've heard in the UK and other countries it is difficult (to say the least) to get help with your IC. I truly feel for you and I personally don't know what might be available to you...but there are a few others here from the UK, hopefully they may see your post and might offer something you didn't know of. I wish you the best...

[icnmgrjill]

Hi Sarah,

Thanks for your reply. First of all, I changed her name and didn't disclose a location. My goal was to show that sometimes patients stop trying... even when they have lots of resources that they could try. In her case, she had a urologist but she just wouldn't go. She was afraid to try anything... and that was very sad. It's very different from your situation where you don't have access to therapies. She did.... she just wouldn't try them.

I will say that I spent more than an hour with her on the phone, took her from crying to laughing and gave her real, concrete suggestions on things that she could do. It was a very satisfying moment for me because I think that I did show her that there were many opportunities for her. Honestly, I wish I could do the same for you too.

Jill's Journal is a place where I can share my thoughts and experiences in this very diverse IC world. But, ultimately, it's a place where I hope that I can help patients think differently about their IC... to get out of old patterns... to consider new options... which will hopefully lead to progress in their IC. If this article helps motivate someone to try again, then I've done my job! We can thank her for helping me to make this point!

Jill O.

[applebetty]

For me I lost hope after having the cloropactin done the first time. (Had it done 3 times). I’ve tried all the pills with only they hydroxyzine helping but that is only at night. I can’t take it during the day unless I want to sleep 24 hours. It seems I get most of the side effects from pills. I do have the heparin done, which I am thankful it helps some with the peeing and pain when really bad, but I just don’t want to be doing that forever. Plus some day my Uro doc will retire or leave and then what? I won’t start over with another one. He has been really great and understanding when no other doc would. Plus I know all the nurses. It’s my second home there. In the beginning I thought if all failed I could just have the bladder taken out. No big deal but then I read about it and that left me with nothing. I will complain to my uro doc at times (yes while crying) but what can you do???? I’m old and lost 10 years of my life I can’t get back. Friends, family…..I try to keep busy doing some of the things I still can do that I like. Sorry for being a downer but that’s why I gave up hope. Someone told me I could have a life through the internet so I bought this computer. Never had a computer before but I can say you can't find a life through the internet.

[poetgirl]

Thank you Jill for your post. I don't know what it's like to have a more severe form of IC, so I can't say for sure why someone would lose hope and not consider any and all medical treatment options. I wonder if fear, depression and anxiety become so overwhelming that it becomes difficult to get your hopes up about something that might not work. Everyone has their breaking point and for some people, it doesn't take as much before they feel like the situation is out of their control. Also, some people don't have a good support network, which makes it harder to get a boost when they need it.

I know that when my IC and VV were at their worst, I struggled with those feelings of despair too. But I kept doing research, kept going to my urologist and gynecologist and collaborated with them until we found a solution that has worked for me. Believe it or not, what gave me the most hope was when I went into my gynecologist because the VV was really bad. I was very upset, thinking I'd never feel normal again, and never have a decent sex life again. He looked me straight in the eye and said very compassionately, "I am going to do everything I can to help you get better." I had tried a bunch of things with minimal success, but eventually hit on the treatments that have kept my symptoms under control nearly all of the time (aside from ocassional urethral burning and vulvar irritation.) But I do remember how frustrating it was to fill a prescription, try it for a while only to not have it work. Or experience debilitating side effects from another medication. Or even do something that usually did work (like taking baking soda sitz baths) that one time actually made the symptoms worse! So many days I wanted to crawl out of my skin. I was so uncomfortable in my body that even a close friend of mine noticed the change in the way I held myself. It's a tough thing to go through psychologically. It helped so much to have people who cared and kept me going when I was convinced I would never really get any better.

[gwynnie]

hi there were times when i was really trying my best and everything just dont turn out well , i am in pain and i feel sooo depressed and want to just forget it and give it.. i was away from the boards for a few months, i was not in remission, i was in depression!!!!! i could not get any help and i was so depressed i just wanted to hide myself up and forget all abt it and live in my own misery until i found a md who was wiling to ohelp me and that gave me hope,,and now i am back at the message boards so even though it wasreally difficult for me,never stop trying is true...

[DebbieD]

Very Good Jill. Plus the Treatments are better now than they were When I Had mY Urostomy 20 years ago

DebieD

[VickiB]

I'd given up hope a number of times during my struggle with IC. Mainly due to the cost of medical care. I have insurance with a very high deductable that I've never yet reached, so all costs come out of my pocket. Don't get me wrong, I don't mind paying if it leads me forward. But there's only so many times I could stand to hear I'm fine, it's all in my head - seek therapy, etc, and have to hand them a couple hundred dollars for the privilege of hearing this drivel. And even the treatments available today are no guarantee. Thankfully, Elmiron seems to have worked for me. But the prospect of $230.00 a month for something that after six or so months of investment 'might' help (I was told 68% success rate) does make you think twice. The reality that the financial cost of my IC takes away from my family is never far from my mind.

Still, after giving up for years at a time, the pain would get so bad and my quality of life so low that I'd try again. Eventually I found a Uro who could help me. I have hopes that the ever increasing knowledge about IC will continue to lead us to quicker diagnosis and better treatments with each passing day. I pray for a total cure for all of us.

Vicki

[ICAmy]

Hi everyone!
I am realllly new to the ICN and am learning lots of great stuff already. For me it hasn't been so much that I've given up, but that it is really hard to find anyone who either takes me serious or actually wants to treat/help me. All the different meds are so confusing and there seems to be so much research I have to do myself instead of having a dr who already knows. I see the drs throwing their hands up saying they don't know what to do with me. Which is very discouraging. Until I come here (to the ICN) I knew there were things out there I hadn't tried yet , but didn't know just how many!!! The more knowledge we have the more impowered we are (and more willing to fight for ourselves and our right to be healthy again).
Thank you Jill for bringing up this issue! Has given me the courage to go to my Dr appt Tues and tell my Dr what I need (not just accept what she's going to give me).
Thanks,
Amy

[marye]

Maybe what we need are some suggestions on how to have successful interaction with a uro and get him to consider some of the options we discuss here. My experience has been that each one has his own treatment of choice and I simply do not know which one to trust! I went to a very good uro who said augmentation is next. Then I went for a second opinion and he looked at me like I was crazy to consider it. I think it's more than understandable that people proceed with caution.

I do think, though, that this site is an excellent resource. I only wish it had been here 30 years ago when I started this. Learning about all the options and especially hearing of someone's success gives you the hope and the strength to keep on trying.

[DebbieD]

With me we tried all things possible at frist then when tried other other Surgeries but having my Bladder Removed was my Last resort.I know that is very Tireing and Just drives people Crazy. I have a Great Doctor at Duke.We communicated very well.

I know alot of women want there Bladder out cause of IC. But Please try everything first Okay. Cause once you have an ostomy , you cannot go back and Change your mind.

I wish everyone the Best. I will keep everyone that has had IC and the Ones that trying to Make some decesions, About Sugery and what there next Option is in my Prayers.


Have a Nice Day

debbieD

[mallenajolie]

Thanks Jill for the post. I guess I am sorry to admit, but I can relate to this woman. I see a pretty well known urologist (mentioned on this site), but I am afraid to do anything like bladder coatings (dmso, other cocktails) because I know people who have had bad luck. I also tend to have bad luck when I try medical procedures. My last hydro / piggy backed with a d&c was horrible. I ended up in the hospital over night, and my pain was aggravated for months after that. The pain drove me over the edge...I spoke to you after it, and you were kind. My pain is somewhat handled but my frequency is out of control some days greater than 40 times a day. Today is a better day, Saturday was horrible, I found myself on that edge again. Sometimes we don't do anything because we don't want to risk getting worse. I don't think anyone mentioned that. thanks.

[patricia1]

Hello everyone. I can totally understand about giving up hope, but not from lack of trying all the treatments I could. I spent years just trying to find a dr who would even listen to me and sometimes this can get very irrating. Then when I find out I have this disease I have really tried to educate myself and learn for myself what I could do. By the time I got my diagnose my case was consider severe and because I went years without any treatments at all most current treatments did not work. I am one who tried every possible thing there was even the Interstim (another story in it self). But I will continue to try things as they become available. I believe that educating myself is what helps me, knowing myself as much as I can, cause believe me there are not alot of people out there (including drs) who can even help us because they know nothing of our disease.

I feel for this woman, because basically she has given up hope for her self. Givien up hope without even trying every thing she can to help her self. I will pray that she will try other things that are available now and hopefully this will help her.

[mayray518]

I know how it is to give up hope. About six years into it I was actually hoping I would die in my sleep somehow. I was always willing to try anything, however, no matter what the side effects. I felt nothing could be worse than the IC pain. The side effects of elavil were not nice but it was so nice to get relief. I think I worried about my future more than anything else. I lost my job of 18 years and my condo and that really concerned me. I have been pain free for 6 years now but the 18 years of hard work and the condo are gone and I still resent that. Health is everything, it comes over riches, good looks, etc. If you dont have that then everything else means nothing.

[ICNDonna]

One thing I have learned spending time on the internet is that for every possible treatment, there is at least one what I call "horror story" out there. With any treatment/medication, there can be some risk of side effects; however, in almost 100% of instances, when the treatment is stopped, the side effects disappear.

In some ways I was fortunate that the internet was not available to me while I was exploring treatment options. My uro told me that he thought he could help me, but that it would take time.

Jill, I think your message is excellent --- we have to keep trying until we find what works best for us.

Donna

[icnmgrjill]

Wow... this has been an interesting journey and discussion. Ultimately, I think it's centered around anxiety. Remember, I was afraid to go to the doctor too! But, we can't let anxiety control our future. IF there's a chance that that one therapy can help... and give you back your life... then it's worth considering if not trying.

In the anxiety class I attended, I was taught that people with anxiety have very creative minds. In fact, many of the best authors, scientists, artisans all struggled with anxiety too. One thing we share is creative thoughts.... and, for us, those thoughts are usually more negative than positive. That is almost habitual. So, when I have a negative thought about the future (i.e. I can't fly.. the plane will crash... I can't go to the doctor, maybe they'll find cancer... )... I have to remind myself that I am not GOD. I cannot predict the future. I also say "Wow, my imagination is very creative today.. but it is JUST imagination and it has no power or place."

It's part of that whole... Visualize a stop sign, take a deep breath, then minimize the thought by debunking it. I am NOT God. I cannot predict the future. How arrogant can I be to assume that I do know what will happen. Instead... it's my imagination ... and imagination has no power.

Makes me think of the husband who called my office, agonizing over his wife in pain. You see, she had many Hunner's Ulcers... and refused all therapies. All she wanted to do was drink coffee and take Morphine. When I got her on the phone after the third or fourth conversation over a period of six months, I stopped playing the good guy and started being tough. I said "How dare you condemn your family to living with this level of pain?" She didn't care. She liked her coffee.... she liked her pain meds... and that was that. Those are the cases that drive me bananas because it's so unnecessary. If she was willing to stop drinking 6+ cups of coffee a day... there was a chance... a real chance... that her bladder would start to improve. :::sigh::: Makes me wonder what she was afraid of.

Jill :(

[PikkuMyy]

I came back to visit after being gone for a long time. Thank God I had PFD and not IC. However, I did wait a long time to get the treatment I needed for it. And I even had the ICN. For me it was two factors:

1) I finally got it together to go to a uro who totally dismissed what I had to say and tried to claim it was honeymoon cystitis despite my cultures turning up negative every time. I waited a long time to see him and since he'd be recommended by a Dr. I really liked, I was very discouraged.

2)Since I'm the type of person who shuts down when she is feeling sick and doesn't talk about it too much (mostly due to my mother's doing that and teaching me to do it), I often kept feeling sick to myself. This creates a cycle of no self-determination.

I finally went to an acupuncturist (who sadly has retired and moved back to China :() who freed me of the pain cycle. When I moved and after a while the pain began to come back, I finally went to see a uro-gynecologist who is a woman and from there to the physical therapist. Now my PFD's been in remission for 7 months and I know what to do if it flares up.

But it took emotional and mental changes on my part with a lot of support from my husband for me to cross the barrier that I was causing myself by not talking about my feelings and about my pain and not standing up for myself. And I think that many people are not there yet, especially if they don't have family support.

[emilyrose197377]

I think some people give up on treatments because of frustration and lack of hope of finding something that will work for you.

[melanie626]

It is hard...the disease is so tiring sometimes fighting the system just seems so daunting. My therapist made an anppt for me to see my MD the other day as I was sobbing in frustraion in her offic. I did, and got what I needed, but taking the the step to make that call just seemed like something that wasn't going to produce much...It is easy to feel like we won't be listened to. I think we need to remember that the squeeky wheel gets the oil...This is an especially weird thing for me because I am a health care provider too, but being on the other side is really hard.

Melanie

[Car99gc]

I can certainly believe why people give up. I am in that state right now. I was diagnosed with IC in August 2004.(I have had severe back pain, which is my biggest complaint, and "peeing " problems since I was in my teens, I am 44) Back in August, I was soooo happy, I had a name for my pain. Thinking I would soon get relief, I was put on Elmiron, and soon, Elavil. The Elavil helped me to sleep for about 2 weeks, then just made me fat. I quit that in about 3 months. I am now on Atarax, which isn't even helping me sleep. My dr. reccomeded pelvic floor therapy, but can't seem to get a call back from drs. office about codes to give to insurance company. Along with the pain, I don't want to start therapy without knowing if it is covered. I don't want to add the stress of money to my problems. (already have enough money problems.) I do have insurance, but of course, does not cover all costs. Thank God I have decent prescription coverage , as I had no idea of the cost of Elmiron. So, here I am, with frequency down, I have started with diahrria,(sp)
for the last month or so. I can now feel free to move around without having to pee, but NOW, I can't leave the house because I'm afraid of pooping myself. My biggest complaint is, and always has been, the constant pain in my back. Mornings are always the worst. I get up to pee every night around 3 or 4, and when I awaken, not having to pee, my back is just screaming.
No one has EVER prescribed pain medication for me, not even sure that would help.
Here I sit, in pain, as usual, and very down about continuing any kind of treatment. I basically live on hamburgers, tuna, (which I just found out could be a problem, by reading the posts), noodles, rice, and water. No one in my family understands my pain, acually, most of them think I'm "cured".
I am not a compainer, I guess that is most of my problem. It just gets so depressing, and most, if not all, the drs. I see, think the pain is "all in my head."
Just SO sick of trying.

May you all have pain free days.
Thanks for listening, and God bless...........

Carol

[mayray518]

I can sure understand why people give up. I was at that point after 4 years of being bedridden, losing my job and everything I had worked for. We don't even get the sympathy that people who are "really sick" get. I finally found something to put me in remission but I can honestly say I do not know what I would have done had I not. I was at the point of not wanting to live anymore. All I know is that we are all brave people.

[Grams]

Finding Jill's cyberspace oasis for healing helps years ago was truly a gift from Above! What a comfort to know that there were others who were experiencing the same misery! (The four years of ic before a diagnosis was a very lonely tme.)
And what a delight to hear of the many healing helps shared by icers on the same journey. What Grams has learned along the way is that finding that special someone in the medical field who is ic literate is truly a challenge. (Although 16 years later, they are more knowledgeable);
Having gone the route of meds and alternative treatments such as supplements, acupuncture, a tens unit, and having consultations with a multitude of uros, (including one at Cleveland Clinic), dos, mds. chiropractors, massotherapists, nutritionists, ob gyns and even a college prof who hooked Grams up to a computer, has been a facinating, frustrating and costly adventure.
The greatest discovery was to find that the pH (saliva and urine) was 5.5, which is extremely acidic. After taking some new supplements, the pH went up to 7.5, thus creating an alkaline-friendly urine to flow through the diseased bladder. Not once in 15 years was pH ever mentioned by any one of those many professionals Grams had consulted, although an acidic pH seems to be a common thread among icers.
November 04, Gram's primary caregiver, Dr. Tamburro, compared the pH levels in the past two uti's. After seeing that there was a 'marked elevation' in the last uti, his only comment was "very interesting. I'd like some more information."
However, here at the icn website, there has been much info concerning alkaline foods and fluids. Prelief has been a real help, though with that low of of pH, it seemed that taking Prelief and a careful diet and antacids simply weren't enough.
Though the nerves are still damaged and the bladder diseased, the results have been remarkable, as there is no longer an acidic 'lemon juice' type fluid flowing through this poor little organ, causing constant irritation.
The pelvic migraines are gone, and am not getting 5 day headaches every month. The spasms, painful urgency and pain are also 90% improved. Have been on the supplements since March 04, and can't explain why these particular ones have been effective...(and frankly don't care.) Just am so thankful that there has been such remarkable relief. Hope this helps. You can email Grams at tellagrams8@netscape.com.

[jeanniebug]

The times I have felt like giving up, it is always from sheer exhaustion and pain. I have tried many many treatments, with no long term luck so far. The next one I'm going to try is Botox. I take many meds. For me, whenever I am about to embark on a new treatment, try as I might to not do it, I still get my hopes up that this will be the Holy Grail. When it doesn't work, I get very depressed and yes wonder if life is worth living like this. But I do see a psychiatrist for depression due to chronic pain, take my pain meds and go to church every Sunday. I'm in the appeal stages of applying for disability. I try to meet up with friends if even for a movie even if I feel like crap. IC has totally changed my life. I can totally relate to everything you all have posted. I have a question for Jill or anyone else who may be able to answer it. My urologist only does silver nitrate and DMSO instillations. I live in a smallish town. I tried the DMSO instillations and it was hellish for me. It hurt REALLY BAD and put me in a flare for 6 weeks that kept me from leaving my home, it was hard to walk from the pain. I also tried the Elmiron for 1 1/2 years with no improvement at all. My question is....what are the other many bladder coatings you all are talking about? I am aware of the Elmiron instillations, DMSO, heparin...but could someone list all of the bladder coatings available or point me as to where to find them all on the website? :help: I would have to get referred to the bigger city an hour away for anything other than DMSO. But I can tell you this, the DMSO hurt me so bad I'm terrified to try any other instillations. And to make it worse, I have chronic urethra pain and cannot tolerate catheters. So I would be particularly interested in bladder coatings that are taken orally besides Elmiron. I've been dx w/IC for 2 years. I'm just coming out of a funk where I feel ready to try something again. I recently had steroid injections into my lower spine to try and help because I also have chronic lower back pain from the IC. I did not help and hurt like hell for about a week. I find it really hard to keep my chin up when I move from treatment to treatment, one right after the other. It's hard on my body AND my mind, I need breaks from feeling like a guinea pig. Great topic Jill. If anyone wants to PM me info about alternative bladder coatings please do! I am not taking anything to coat my bladder at this time, and I feel the same as when I was on the Elmiron. Sorry if I've taken this off track a bit......all I can say is we IC'ers are survivors, and in my opinion a very strong group of people to struggle through and keep fighting. :grouphug:

[erma]

Thanks for the post Kelly. I had my first IC last August 2004 and now am going to get my 4th treatment of DMSO Monday. It is so painful I hate to go but my Dr. says this is the only treatment, or he says it is the best. After reading on the internet I know there has to be a better way.
Thanks for all the help on this site.
erma

[erma]

Dusty my heart goes out to you my dear. I am so glad you posted this, because if it is ever suggested to me I will know not to have it. I am 72 yrs old and just started on this last Aug. so I guess I am luckier than some on this site. Know that I am praying for you my dear.
erma

[erma]

Thank you. I am praying for a cure but will be happy with just some pain relief.
I am taking DMSO. that is all my URO will do. It is so painful. I am getting my 4th one Mon.
erma

[jeanniebug]

Hi Dusty. I thought your post was very informative, and I appreciate your being so honest with your experience with Intserstim. I sent you a PM. You are in my prayers that your pain will ease up for you. :kissing: I'm so sorry you have to go through all of this pain. :grouphug:

[mayray518]

I got to the point where I had totally given up also. I could not go on after five years of being bedridden and, at that time, none of you wonderful ladies to talk to because no internet. Then I gave it one last stab at elavil and it worked. I had basically lost my reason to live, no job, no social life, I didnt have kids to worry about so I figured why be bothered. I still get annoyed that I have to start my career life over again but I got another chance. Lets hope they find out what causes this disastrous disease and that we can be groundbreakers for women who get diagnosed in the future.

[gfriskopp]

Wow. This was my first time really reading any of the posting. I have had IC for two years and while some treatments have been helpful, lately I have been very depressed and feeling hopeless. (I am in a lot of constant pain and it is getting worse) I want to thank all of you for sharing all this information and your thoughts. I am feeling MUCH more positive and not so alone. I plan to call my doctor today and start looking into other treatments. Thanks a lot I needed this.

[pottywoman]

For me it's because of people telling me how lazy, fat and lucky I am I don't have kids or a husband. I can't do things the way I use to and the world thinks there is nothing wrong with me. I get tired of fighting the world. No one understands this no matter how hard I try to explain it. It's like being beaten down all the time and over the years I just get tired of it. I had dreams and I had a life before this. They tell me to get out and go some place. I say how do I do that? Between the bathroom and pain just how? I don't want pitty or help just to be left alone to survive the best I can with this. That's all. Also hear how if there is nothing for it then why bother to try anything?

[erma]

I took my 4th DMSO treatment last Monday. And so far I am free from pain.
I am watching what I eat and drink and pray I never have another flair up of pain.
I also got med Elival and it is really helping.
love erma

[darlene]

Dusty, Please don't give up hope of a better life in the future. Drug companies are working on new, powerful, non narcartic pain meds this very minute. Some are already in clinical trials. Better days are comming!

[minnie_min99]

hey Dusty,

don't give up and please just follow alot of stuff on this website because it has helped me lots. also, dont be shy to talkt o your uro about anything because i know that without mine, i would be lost with all of this. But just like the rest of us, you will get throught it.

[mlb]

Dusty, I have nerve pain too and it is horrible. Have you tried Neurontin? It helps block the pain signals to the brain. It is an anti-epileptic drug. I have nerve pain in my clitoris and down my leg.... like your being electructed. Believe me, it is beyond belief. There is also a new drug called Lycria that is for nerve pain that is almost ready to be released.

I thought it may help you. God bless..... I know it's so hard. One day at a time.

[JudyS]

Hi Jill,

I don't want to say that I've given up, cuz I have pursued almost every treatment I learn about, but even though I educate myself and see IC specialists (Dr Payne @ Stanford), I still end up at the same place----an impass. Dr Payne told me during my last appt that I don't have any more options at this point. I don't want to give up, but it takes all of my strength to do what I've done and I feel like I haven't accomplished anything sometimes! I'm not feeling sorry for myself (right now)..I just wanted to share why I have thought of giving up.

[Dusty]

I have read some of Dr. Payne's articles on IC..as Stanford is a very good hospital.
I was impressed with what I read. I am sorry you too have come to a dead stop in what to do. I wonder if we all don't just reach that at one point in time.
I hope something works for you too soon.
Dusty

[JudyS]

Dusty,

I'm so sorry about what you've gone through with the interstim....I'm very thankful that when I had my spinal cord stimulator implanted, I didn't have any nerve damage. I was one of the very first IC patients in AZ to try getting a stimulator and it really helped me for about 18 months. Now, however, the leads have shifted and are not stimulating the right nerves and my insurance won't pay to get this corrected. I really hate dealing with them; it's hard enough dealing with the pain and finding the strength to pursue whatever options I can find! Sometimes I just can't find the strength to battle them too.

[darlene]

Dusty, you might want to ask your doctor about Prialt, a new painkiller, 1000 times stronger than morphine, yet it isn't a narcotic. It is developed from the venom of a marine cone snail. It isn't a pill, but is used in an infusion device, and only for the patients with the worst kinds of chronic pain. Other oral versions of potent, non narcotic painkillers are in the testing stages. There is hope for your IC and nerve damage pain.

[MakinIT]

I believe the answer to that is quite complicated:1...and I hope maybe the easiest to remedy maybe education, which this website has helped me with, IMMENSELY. I remember starting on this site and I was lost, in pain, angry, confused....docs were saying different things....I had to organize my thinking and this helped. 2: I think we go through the same stage of grieving that a person who has suffered a death in the family (although not as intense) so you keep going up and down those 5 stages....unfortunately, we don't progress from one to the next, we often fall back. It's happened to me MANY times, and I usually fall back to ANGER, then go to depression....Sometimes I think I've accepted it, but then I realize I'm really medicated :biglaugh: .
3. Feeling like you've tried all the options and you've run out. (you go back to education.) or you're just tired of it.

I know, for me, this has been a complete shock to me not only physically but mentally as well. I used to be a very hyper, creative, running around to the point of being ADHD. I drove all the other teachers nuts during meetings b/c I would wiggle and poke them, and get them off task as bad as a kid. The administrators had me for 10 years and knew better than to make me sit during a meeting...they let me pace. So now, I'm stuck at home most of the time, tired, hurting, sometimes beyond hurting to curled in a ball, under my covers. Always medicated...which I have to have, and I feel so fortunate that I have docs who will treat that. I have become so depressed I've thought of killing myself. What saved me there was a psychologist trained with chronic pain patients kicking me in the butt and making me look inside myself and deal with the "new me" and what I was going to do with my life now. That's part of why I gave up, for a while. I lost focus in my life. I had no relevance, and am still searching, but I feel better. Unfortunately, I've worked voluntarily and can handle about 5 hours once a week. Then I am reallllly pooped. I usually have to sleep for a while the next day.

I'm now making it my goal to check the internet sites on IC once a week to see what's new or coming down the pike...checking research....waiting for social security hearing...Oh what fun. But I havebeen doing that for while.

thanks for a good topic...guess I haven't really thought about it, and it made me think about it and put it into words.
Tracey :)

[fireflicker285]

I love the way you say "have faith you will live normally and you will live normally". That is so important. We "must" focus on the good things we still have in our lives, and the threatments that "may" indeed work, and the better days to come.

I woke up this morning in alot of pain. Another flare. But I must take heart. I just had 3 good days in a row! They will come again......

[Dusty]

I too am grateful for even one day that I might get once in awhile for no reason what so ever..I have no pain..and believe me I notice it..as it is so rare an unusual for me.
I feel like a lark on that day singing to a wonderful morning.
I believe we can turn a bad situation into a good one...so I guess for me it is matter of thinking. No I cannot do some things I once did, but I fill the void with other things now and look for new ones all the time. I know I can always find someone somewhere worse off. I also have faith that we can conquer about anything we deal with..I have dealt with a lot of serious things in my lifetime, illnesses, unexpected and too soon deaths, and seriuos on the spot crisis..but they have all molded me into a person that can move forward and look ahead...to the I have faith it will get better. I have faith this too will turn around. I also will fall back when I am too tired, too much in pain day after day, but usually if I turn my focus to another I feel better as I see them and their need.
Everybody gets down..but I hope all that read here can find the strength to know it can and will get better.
Dusty

[veeneck]

Boy, is this a big issue. I struggle with it all the time. Because of my IC I have had to give up my favorite foods, sex is painful and I avoid it like the plague, and I am in pain more often than not. I can't exercise, I can't wear half of my pants, and you can forget about doing things with other people, because I am constantly, constantly peeing. I have lost so much, it just makes me say to myself, "screw this, I am going to have that coffee anyway, I am going to have a drink with my friends, and have a half an hour of pleasure before I pay the price...what's the difference, I feel like crap anyway..at least it will help me wake up/give me some pleasure." It's sort of a nihilistic attitude, like nothing's going to work anyway, so you might as well just give up.

Pain is, I think, the thing that leads the most to hopelessness and depression. With some kind of pain control, a person can muddle through and start looking at ways to deal with the disease and organize your life so that you get some satisfaction and pleasure from something other than the things you have to give up.

Victoria

[lexur]

Boy, is this a big issue. I struggle with it all the time. Because of my IC I have had to give up my favorite foods, sex is painful and I avoid it like the plague, and I am in pain more often than not. I can't exercise, I can't wear half of my pants, and you can forget about doing things with other people, because I am constantly, constantly peeing. I have lost so much, it just makes me say to myself, "screw this, I am going to have that coffee anyway, I am going to have a drink with my friends, and have a half an hour of pleasure before I pay the price...what's the difference, I feel like crap anyway..at least it will help me wake up/give me some pleasure." It's sort of a nihilistic attitude, like nothing's going to work anyway, so you might as well just give up.

Pain is, I think, the thing that leads the most to hopelessness and depression. With some kind of pain control, a person can muddle through and start looking at ways to deal with the disease and organize your life so that you get some satisfaction and pleasure from something other than the things you have to give up.

Victoria
.....I'm sorry reading this actually made me cry...there is actually someone else out there that feels EXACTLY like me....oh that feels so wonderful....I'm so glad I found this site today....

[fireflicker285]

I know just you mean, both of you. I feel that too. We do miss out on so much if you think about it. It really does suck. I still feel sorry for myself I don't know how many times per week or month that I cannot have a normal sex life with my husband. He is understanding, but I feel guilty.

However, I know that despite this, we have so much.... Things are different, very different, true, but we must not lose site of the fact that we are more than our IC and we can make it through. I can feel sorry for myself and cry, but then often (but not all the time) I can pick myself back up and REFUSE to be a victim.

Ofocourse I have had 11 years experience with this disease. Not that you ever get used to it, but you somehow learn to live inspite of it.

Please hang in everyone.
Hugs,

[MakinIT]

OMG we should do a poll on how many of us feel like complete putzes about our sex lives. I think, in three years....not to give too much info but since I don't really know you all....I've had "real sex...that is vaginal penetration" twice....My husband is not complaining, understands, but it truly takes the intimacy (I,m not just referring to sex) out of our marriage. Our anniversary this weekend. I've been doing pelvic floor therapy again and my PT says I'm so tightened up (she thinks I've got adhesions back...she actually was trying to pull my vagina away from my bladder neck and said they are stuck together. It hurt like hell. ) I've got to do something...It's not fair to another person to shut off their sex life too. I feel soooo much guilt with this.

[jeanniebug]

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

I can relate to EVERYTHING you all are saying. (((MakinIt))) for the record I feel like a complete putz with my sex life. It's officially in the toilet right now. :toilet: Like all of you, this disease has completely changed my life. I see someone for depression from the chronic pain. The meds don't help with the moods either. :rolleyes:

We are all very strong souls. I am learning to accept life with IC and make the quality of my days as best they can be, depending on my pain level. It is very hard though when I am huring like hell. I like what fireflicker285 wrote, that 'we never get "used" to it, but we can learn to live inspite of it.' That really hits home.

[MakinIT]

Hey well....as a consolation gift, I got a new expensive medical toy today. (No, not for sex) It's the Bigass TENS unit. ummm official name is a sequential stimulator. If you have muscular spasms that lead to more and more (like in a cycle like mine) this is great. When my bladder acts up it makes my back tense, then it crepts to mid back and to my neck. With this thing, I'm to use it twice a day. It has a very wide belt with 4 pads pluged into a controller. The controller can handle 8 pads. I also have "free floating pads" ( Like TENS) That I can put whereever (ummmm...well, use some common sense) that plug into the other open ports on my controller. AFter I get into this gadget (the first time today took a 1/2 hour cause it was just trying to get used to where to put whatand things unplugging and trying to comfortable) Then, I have to lay flat (you can put your heating pad on and a little pillow under your knees as long as your back isn't lifted. When you turn on the controller, each pad set has a seperate control and you adjust it. The first 15 minutes on mine is pain control (it thumps the heck out of my muscles I think until they are numb) then the next 30 minutes is the massage part. The controllers kindof start squeezing your muscles. My rep has programmed me for 45 minutes. The cool thing is, they automatically send you supplies every month, it's a chargeable unit so no batteries. (But you don't, like run around with it obviously.)

Anyway...hope you all have a good weekend. Got to go get my second zapping treatment...

[Freedom]

I'm newly diagnosedi was supposed to help volunteer to clean up and replant a garden for some
disabled kids today.I can't make it,but my boys can. I cried.

[MakinIT]

Freedom....You'll have many moments like this, but many happy moments too when the day is GOOD and you can do it. I'm so happy for you that you have boys who helped for you. You have to realize, like I said in an earlier post, you'll go through the phases of grieving just like a person who has lost someone or has learned they have a terminal illness. Just b/c we don't die from this doesn't mean we feel "normal" and like all is cool. Especially those of us who suffer the pain, opiates, rotten docs (at least a cancer patient gets pain meds w/o a hassle....and I am in NO WAY saying they shouldn't or am saying anything bad about that....they should have whatever they need) and families who sometimes are supportive and othertimes grow more distant. They too, undergo a form of grieving b/c you are now, well, hurting and disabled and unable to do what you could.
The pain management Doc I was referred to is sort of a putz....He's more used to working on bad backs, blown knees, etc...However, he did make me go right away to a psychologist who specialized in chronic pain patients. My insurance only covers 29 visits every 2 calendar years (In some preset cycle) so I saw him for about 6 months steady after dx. It kept me from killing myself. In January, I was given another 29 visits for 2 years....of course, I have about 10 left...then, if I still need him, I have to wait until Jan of 2007. When I started seeing him again this January, I was at rock bottom again...not about to kill myself, but very depressed, b/c I had no focus in life. So that has been our theraputic focus, for the most part. We've digressed a few times..But for the most part he is like a "mama bird" trying to kick me from the nest.

Once you can get a hold of the pain, grieve over it, realize there will be days when you can't do something and your friends and family will have to understand, You can try to start moving on. I'm still trying to decide what to do with this new path I've been given, since I can't teach special ed kids anymore...I keep going around and around....(I can't teach the level I was....very aggressive and/or ones I had to lift)

Take care Freedom...realize we still grapple with this.

Tracey

[Freedom]

Thanks! You are right...I AM grieving right now (not a physcial death,but a death to my "normal" way of life),which can be a part of healing,which
then leads to me dusting myself off and doing what I can on the good days!
thanks!

[Portia17]

I have been reading these posts and I can relate big time.

I was diagnosed in March 2005 but had all the pains and frequency since November 2004. You know how that is. You go from doctor to doctor and they can't figure it out and until someone figures out you have i.c. it takes forever with the waiting and no help.

Just so you know I have been in remission for over a month now. Thank GOD.

I thought I would never post this. I would cry and scream and yell that diet was not working, dmso and pain pills were not working.

I went to pain mgmt before I was diagnosed and she helped me starting February.

I was in agony from November 2004 to end of April or way beginning of May 2005.

Do not give up. I think the combination of the dmso, pain pills and other pills and strict diet has put it into remission for now. My doctor is letting me have 16 or 14 can't remember dmso treatments. I have 2 or 3 more to go then I see him again. He told me I can go there anytime after that if I still want to go once a week, but not for dmso as their is a limit with one of the meds they put in.

I was like no problem

He and my pain mgmt did put me out on disability at work since nothing was working and I am still applying for ssd because I know this remission will probably not last forever.

I also developed new problems since the i.c. went into remission, chest pain, shortness of breath and had and e.r. trip and work up with cardiologist and pulmonary is all okay. I am still suffering bad with this and have to go to psychiatrist on Monday as I told her xanax and klonopin do not cut it anymore. Sometimes I wonder if this what I have now is worse than the i.c.

Well I just wanted to give you guys some hope

Hugs

[Tweety69]

Thanks! You are right...I AM grieving right now (not a physcial death,but a death to my "normal" way of life),which can be a part of healing,which
then leads to me dusting myself off and doing what I can on the good days!
thanks!

Hi, I too am going through this grieving process and feel so much better for reading posts like this. I thought because I have been suffering with this for 4.5 years now I would have gotten to terms with losing my old life. I think for me, because I wasn't given a diagnosis for my symptoms, this made it much harder to accept my problems and move on. Since a diagnosis of IC just over a month ago, I have felt very emotional and depressed to the point that I thought life wasn't worth living anymore. Don't get me wrong, I don't want to die, I just struggle so much with the thought of living the rest of my life with IC. I know I still have a long way to go before I can feel more positive about my life, but reading these posts just helps me to understand that it is normal to feel this way. I have to learn to accept (in time) that my life from now on is going to be different and that there is still so much I can do.

I realise it is going to take time for me to go through this grieving process, and the only person who is going to turn my life around is myself. It is all too easy to feel alone and isolated with this, but knowing there are so many others who feel the same way serves to give us the hope to carry on. Thank you.

You are all in my thoughts, Tweety x

[Pain]

Keep in mind that some IC patients do not have a choice to try everything out there and/or their symptom makeup does not warrant them all.

There are lots of reasons and I sure wouldn't want someone to feel bad that they hadn't "done it all" unless I fully understood their situation which is impossible in one phone call.

For those of us with 24/7 horrific pain the drive to be fixed is as high as it can be. That being said, some live in other countries, some have no money/insurance, and some, like me, have a urethra that does not allow any instill type treatments due to a horrifically botched surgery 25 years ago, massive scar tissue and the inability to be cathed by even the best experts using a child sized cath without causing severe damage/bleeding and pain out of this world. So much so I must carry a card in my wallet that "warns" of this and even something as "simple" to many of you such as a sterile urine sample via a catheter can be next to impossible for some of us..like me.

That being said..I have tried 64 different medications, treatments, surgeries, invasive things, etc and NONE HAVE HELPED (except narcotic pain relievers a bit) but many have made me worse - permanently in some cases. That is my own experience not to be confused with anyone else's.

I have primarily ONLY SEVERE 24/7 pain as well as lots of matter/shedding/bleeding of bladder/urethra tissue. I have had 24/7 pain for five years, four and a half months with never a minute of letup.

I have not pursued anything "new" other than keeping up on all medical trials and research for over two years now. There is nothing left to "try" on me. I do not fit the NDKK criteria for IC technically since I have mostly only PAIN 24/7, diet has NO AFFECT on it and I don't have the F/U so much.

At times I see some folks who have what I would term "active bladder" that are "fixed" with one of the bladder spasm meds, etc. Good for them. And some who feel Elmiron helped, not hurt them...I applaud them. But that is not the case with me.

So my only "treatment" is 24/7 narcotics and the stigma and horrific side effects that come with them. And the threat of having the one thing that helps me being taken away by a cruel society at any time.

Again..those of you that have "flares" and/or little to no pain and relief often, I am happy for you...but..not all are that lucky. And yes there are times when one must "step away" for a break from the never ending quest to be fixed when all one encounters is failure, rejection and worsening of their condition. That does not mean they give up on prayer for a "cure" or "remission" but it does get a bit hard after five years of that same prayer every day.

I for one am GLAD I did not try some things (though I would have if I could have probably) that caused folks even more grief/pain. If you follow studies like I do, you will see that of all diseases, IC "treatments" studies have some of the worst case study results out there and the side effects are often times very high.

There is not "treatment" for the disease itself really...except Elmiron..which has proven to be a dismal failure at best but yes some have found relief while on it and have tolerated the side effect. Many are to treat symptoms for the most part and horrifically invasive...and like narcotics, to think of doing them every single day for the rest of your life if sometimes unimaginable.

I hope this girl does not feel like a failure now because she hasn't "done it all" as that will only scare her further into isolation. I hope she does agree to try the less invasive things at least..I tried them all for long periods of time and none gave me anything but new problems. Yep..Atarax, Prelief, Elavil..the list goes on and on. But yes I did try everything I "could" and even some I should never have tried...and got worse as a result. Why? Because some gave me the same "talk"....if I could I would have stuck with the knowledge I had of my own body and not done some of those invasive treatments.

I would never say that anyone of us has "given up"..just taking a break waiting to hear about something that has great success for all IC patients...across the board. It's been a sad five years one day at a time for me waiting for that. I'm glad some of you have found relief and/or remission in the mean time. Pray for those that haven't...yet.

[MakinIT]

Tweety
Hey...I know that feeling all too well. Even though a couple of days ago I was giving Freedom the "chin up" about going through the process of grieving, I found myself in a crabby, pity party again today. It was my anniversary, besides father's day, and my husband is treating me like a tolerated sister in law. No card, no flowers, no acknolewdgement. I gave him a card and a new sweatshirt (yeah, romantic but he really wanted that and the kids had other ideas for fathers' day) and said "happy anniversary"...He basically said thanks, didn't read the card (in which I wrote a HUGE letter) and went back to his computer game. Later when I was a stated my disappointement his reply was along the lines of "why are we celebrating it? we can't even have sex?". I was pretty floored. I've been with this man half of my life, exactly, shared everything important with him....aggg...he asked later if I'd go to BATMAN with the family. I said no (that's where they are now) He said we'd talk later.

That's when I meant when I said the grieving process is fluid for us. There is no closure for chronic pain. we think we've had acceptance, then something rains on your parade, and you drop down a couple steps on the ol ladder. See, I almost didn't even get on line, wanted to pout in a corner...my bladder is acting up, although my new electro stimulator works GREAT. I have this urge to take some valium just to keep me from getting ****** off even more (guess where I am on the ladder, for about the millionth time...I think I have anger issues :headbang: :biglaugh: ) Anyway, this new toy is a pain to put on but feels so marvelous I go to sleep. I wish it wasnt so complicated because when I have like 2:34AM spasms and I stagger blindly to the can for the fourth time, I'd like to put it on. (instead, I take 10mgs valium.)

I guess, in a way, I have made it over one major hurdle...when I'm feeling emotionally wounded, I'm not retreating...I'm sticking with my routine...(One reason Ive been so in and out of the boards.) I'm sure I'll be over this soon...
Tweety...since you've just gotten the diagnosis, you will take a lot longer at each phase and struggle to find the tools to help you along. If you have a Pain counselor you can see, that would be best....If not...and you are religous and have a trusted pastor, speak with him/her. I guess many folks who are religious find comfort and strenghth with prayer and guidance...I dunno, whatever works to help people feel better about the new life they have to cope with. Some folks have a marvelous spouse and/or best friend. I don't know what access to mental health you have, Tweety...but please talk to someone seriously so you don't feel bad about yourself. I fight that demon daily (that with some guilt tossed in for good measure)

Take care :) :) :hmm:

[marye]

We need to keep in mind that IC is often a diagnosis of exclusion. Reading the posts here it's obvious that everyone does not have the same exact problem and everyone reacts differently. Also that different urologists approach the same problem with different treatments. I've been to three urologists. Two say IC, one says IC treatments will not help (this was a highly respected doctor). It may be hard to believe, but I actually hoped that IC was the right diagnosis because it gave me more treatment options. Now that I've tried some treatment and made my pain level much worse, I know it may be time to accept that this bladder will not be healed. My heart goes out to people like "Pain" who posted above, there are some things they just don't have the ability to fix yet. Sometimes it takes a lot of opinions to zero in on the problem. This site is a wonderful source for helping to understand your particular problem and to find solace in knowing you don't suffer alone. We all need to remain proactive and hope that research will eventually fix everyone.

[pottywoman]

How can we not give up hope? Most everyone will say there is nothing wrong with us. We are just lazy. Or we are fat because we eat to much. Or how we love to stay home and do nothing. I read in the beginning of this that people who have to have kdiney dialasysis feel they have more of a life then people with IC. We have the higher rate of suicide also and I understand that. I came close to the end last year and if not for my wonderful Uro I probably would have. Sometimes I think it is much better not to look for more information on this because with each try comes failure. I too have tried all there is except for the invasise surgeries which I would not do now. Wanted to in the beginning but Uro said no. I would be worse off and he is more then likely right. Maybe if the world would get off our backs we could deal with this much easier. After all it is like time of constant pain. Never ending and even with pain pills (which I can not take) there is only a little bit of relief. From the very beginning of this I kept hoping it would be cancer or turn into it. With each test saying nothing wrong it was a let down beause with cancer it won't go on forever. There will be an ending one way or another.

[MakinIT]

It's that up and down thing. My husband brought me home some flowers after the movie with his dad, and a card. The card said usual anniversary platitudes...he personally wrote: I do so love you, but we need to talk. So I asked him this morning what that meant and when he would like to do that (considering he's leaving with the family for Canada for a month next week) he said it goes back to an email in FEBRUARY in which I sent him an email full of questions, frustrations and anger. I don't know what all I said. You know how it is...you get frustrated and angry with a spouse....My husband often believes himself above reproach, although he is an incredibly hard working man. I think I was feeling rejected because he never wanted to spend time with me and he was in a pissy mood all the time. All I wanted was answers and since he wouldn't take the time to sit with me, I sent him an email. I vaguely recall he sent a reply that was SO Angry and vitriolic that I couldn't finish it. Much of what is happening with me has to do with meds/ change in life (no, not post menstrual but change in occupation or lack thereof)/ lack of clear thinking....Pain, always pain...Yet he's been focused solely on this one email written in a fog 4 months ago. I sent him a note today saying I agreed, it was a crappy thing to do, to let my problems be expressed via email. But he has to give me a break...especially when he is not exactly the most warm and fuzzy guy to walk the streets. He told me today he was very mad I had apparently not read his reply (I had, I just don't remember...he does not understand the use of all these pain meds, zonegran, topemax, antispasmotics...and how it affects memory) I remember apolologizing and saying I had not seen things from his side ...but he needed to be sympathetic to me. He doesn't care when I try to tellhim the things that go wrong, or what good things are happening. So...there's a reason to just say "what the hell"...you get tired when you have no one helping support you. I find my mood reflect his, and this is terrible. I have to be my own person and I really thought I was.

Anyway...Pottywoman, just remember, there are points in which you can see some sunshine. I too, see the dark, and want my corner to huddle in. (especially if there is a toilet in it.) just a little joke.

take care and have hope.

[mlb]

No one knows another's pain. Personally, I think IC sufferer's are the most brave people on earth. It takes an incredibly strong person to survive this disease and pain. Just wanted you all to know that.

[mags]

PikkuMy,

What do you do for your PFD symptoms? I have ic, but also am starting to believe that i have pfd too.

[MakinIT]

PFD is insidious....If it gets too bad you need to look at seeing the physical therapist. You can tell if its PFD...Do you have trouble starting your urine stream, pain with intercourse, pain in the clitoral area to the back...the final straw is such a strain to go poop even if not constipated (normal stool)...Your muscles have to learn, just like any others, to go.

Anyway...I can tell you more about what happens...let me know....

[JenG]

I was one of those - never give up hope, there is always a solution, keep trying, look on the bright side - people. But lately I can see how easy it would be to just give up. Everytime I think I have this thing figured out, something happens to shake it all up. :mad: Three of the doctors I have seen recently (for IC and fibro) want me to switch from elavil and prozac to cymbalta. So I ween myself down, going through all of the withdrawel stuff, then go to fill my cymbalta script and then I hear - "so sorry your insurance does not cover cymbalta". So after setting myself up to take this drug that so many of my docs said would really help I either have to pay $119 a month or find something else. :cussing: Every time I take a step forward I seem to take three back. If that doesn't want to make you give up - I don't know what does.

[emilyrose197377]

Jen, I know how you feel it is the same with my insurance my gyn wants me on elmiron and went to fill the script and the pharmacy says sorry but your insurance does not cover elmiron. Now I have to go through another procedure on July 8th just to get my elmiron covered by my insurance it is so frustrating That is enough to send you into a flare right there.

Take Care
Kim

[MakinIT]

Em: I still think that just blows my mind.....THAT is the drug for IC....I couldn't believe it the first time I read it, I still can't believe it. (I don't use it.....Lots of hair loss, figured that was a sign my body didn't dig it.)

Jen G:I know you've prob thought of this, mebbe already done it...Have you had your docs contact ins. with an exceptional need letter? Some insurance companies are very open to this as long as the doc does a very good job documenting all that has been tried and why it failed. My insurance sucks in that regard....It has a formulary plan, $10 generic, $20 name brand and then some listed as PA (meaning Prior authorization needed) and then absolutely not. The PA's have NEVER been approved despite the fact that doc, psych and pain doc all wanted me on name brand one time a day Well butrin And Avizna, a one time a day slow release opiate med. My body can't handle the frequent ups and downs. They just kept replying..." there is no evidence to prove that one is better than the other"...Made my internest so mad he got on the phone and said he didn't care about any studies with random subjects, I was one patient with a very complicated medical history . They still didn't care. Yours might....If you haven't tried, give it a shot...It can't hurt.

Good luck

[broken_smile]

Hello Everyone,
I thought I was on the right track finally after visiting a Urologist in Greensboro, NC. He is very nice and compassionate. He wrote me several prepscription and I told him I could not afford the Elimron but he insisted that I could probally could get the drug from Ortho McNeil because I was on disability. He filled out his part of the paper work and I filled out my part and the company denied me said my husband and I made $5000.00 to much which I don't see how as my husband is only making $9.00 an hour and I only get $1011.00 a month but am on alot of other medicines and have alot of bills. I had broken down an bought the Elimiron along with Lidocaine, sodium bicarbonate and heparin instill and got along good for a month until I ran out of both drugs now I have over $700.00 in unpaid drugs on my account. I tried for medicad and was denied. I guess they want me to be almost living on the street to help. I am so upset now and having a major flare going on four days now. I still buy the Trazadone, Hydroxine but without the Elimron and instills I am basically back to square one . I called the urologist office and he told me to try Algnot that were getting very good results with this about as good as the Elimron. Please don't miss understand me I am not asking for any help from anyone but this is the reason it makes it hard for me to bring myself to go to the doctor its either go to one and they look at you like you are crazy or go to this wonderful doctor in greensboro and not be able to afford the drugs that will help. I have put in for a medigap card but ask about how much discount I would get on the Elimron and they said about $40.00 so that would leave me with $240.00 to pay. I think Ortho McNeil should be ashamed of thier self for charging so much. I hate IC because it took my life away I used to work and enjoyed working and I had insurance coverage and I have some hosility about my husband not having insurance coverage and for not looking for a job that does have it. People understand in your family up to a degree but don't offer much help. I am sorry this is long but I had to vent. The only good thing is Medicare will be offering drug coverage in January 2006 maybe I can hang in there till then. Has anyone tried Algonot or Cstyoprotek?

Broken_Smile :loco: :toilet: :grouphug:

[mlb]

I'm so sorry you are going through this. There should be a compassionate fund for people who can't afford drugs. Here's some information on Partnership for Prescription Assistance 888-477-2669 it provides a data bank that makes it easier to learn about 275 public and private programs for help with drugs. I hope it helps you.

[takinitslo@eart]

What were your symptoms that you were given Vistaril? Any side effects?
----------
I want to take a moment and share a phone call I received yesterday from an IC patient. She called to find out if there were any new treatments on the horizon... saying that she was very depressed and tired of being in pain. :help: But as we talked, I was stunned to discover that she had only tried one treatment (i.e. Elmiron). It worked for her for three years.... but then she had some side effects and had to stop. But, from that moment on, it appears that she hasn't tried any of the new therapies... including something as simple as hydroxyzine.

I had several points that I tried to make with her but the biggest was "Why are you worried about future treatments when you haven't even begun to try all of the new therapies that have emerged in the past five years. From antihistamines to rescue instillations, there are so many things that should try that research shows can help." :hmm:

Her answer focused on her fears. Her fear of pain. Her fear of failure.... an overwhelming fear of trying anything. Yes, there's always some degree of risk.. which is why we have research studies. But there is also GREAT HOPE, especially when we those same studies that PROVE that these therapies can reduce pain. I can't imagine what my life would be like today if I hadn't tried Vistaril, which eliminated most of my symptoms and gave me my life back. It would be so much sadder.

One thing that she and I shared are struggles with anxiety. Back in those early days for me, I also was very afraid to go to the doctor and, more so, was afraid of the pain. But, I finally looked at myself in the mirror and said "I suck at this. I have no skills to handle the pain and I don't want to live in fear anymore." Just days later, I found an anxiety management class at my local hospital that changed my life for the better and helped me find my courage again... including the courage to try new therapies. I also talked with a counselor! I really needed help and finally admitted it to myself and made that phone call... embarrassed but grateful none the less to finally share my struggles with someone who would listen to me and care for me.

So, if your IC is out of control and you are suffering, don't sit in silence at home alone. You can ... and you must .... keep trying. Believe in a good future for yourself! At a minimum, make sure you've tried the basics (bladder coatings, antihistamine, antdepressants). Remember, if one coating for worked for you but you can't keep taking it... there are other coatings that may also work for you. Lots of other coatings!

Have a pelvic floor evaluation to make sure that your muscles aren't causing some of your symptoms. If you're still not happy with your progress, consider the newest therapies... such as rescue instillations or botox. Patients who can't afford those can still try the over the counter supplements of Cystoprotek, etc.

Remember, too, that pain is a two way street. It's not just about using medication. It's about you honestly assessing your abilities. If you SUCK at stress management, then go take a class to give you better skills. If tension is an issue, then a relaxation class can help! Relaxation tapes, used daily, can help keep muscle tension from building and adding to your pain. Meditation, hypnosis, heat, resting.... there are so many things that are worth trying!

Please don't let fear control your life and your future. Have faith that you can live normally and that you will live normally. You're just on a journey... and it's up to you to do the work now to learn about what your treatment options are... to have the courage to call your doctors.... to have the courage to commit to a therapy for a reasonable amount of time (i.e. this means... don't quit week after a week unless, of course, you're having problems with side effects)...... and, hopefully, find relief as thousands of IC patients have done in the past!

Jill

ps.. I won't even harp on diet. If you're drinking one cup of coffee or soda each day, then you're part of the problem! Stop irritating the bladder, would ya?? :cussing: Your job is to soothe and protect the bladder instead! Treat it kindly! :kissing:

[Cheries]

I think the difficulty lies with some of us who have tried just about everything on the horizon. You just get tired. Then it is time to reconnect (with people here :) and get hope. It is very easy to loose hope with this disease due to the nature of it. Pain is a deadly disease and needs to be addressed as such. I get frustrated because I see no reason for me to be in constant pain! Do I cope with it? Yes, and sometimes better than others. I am so happy that you were able to find a treatment. I am still looking. Another reason it gets difficult to try new things is that many of us ICrs are very sensitive to medications. When we try something new we may be in for a major flare. So yes, it does take courage and large amounts of it. Another reason is expense and distance. I live in a large city and have only found one doctor who is truly compassionate and willing to help those with IC. Most urologist simply do not treat it. Of course, I have to travel 45 minitues to see him and he has very limited hours. So yes, I can see how we do get discouraged between the fight with the disease, insurance companies, let alone trying to keep some semblance of a normal life going can be a monumental task. I know it takes great strength to go on day to day with this.

[Cheries]

Jill- I have a question. The site, allaboutic.com is great, but I am interested in what these three people did to get help! What medications put them in control of their symptoms? Do you know? Thanks..