need help

[akh]

I was diagnosed with IC in 2008 and I am in the Portland area. Right now I can't even sleep at all with the severe frequency I have. I hate to say that I have no help, no contacts, no money. I do have medicaid. So far I am not faring well for several reasons. I have not found a doctor or person who actually takes my symptoms seriously. I used to be able to weather through most of the nocturia through taking a sleep aid. Apparently in Portland (I am from Ohio) asking for a sleep aid is seen as a potential sign of an addict, given addiction is a huge problem here. I don't even bother to ask for pain control help though last night I was in so much pain I wished I could die.
Things being what they are, I had no way of sleeping save for putting a Foley catheter in. Apparently, this is something you do not do. I have made my IC worse. I have had this disease for 10 years and have been through so much hell I no longer trust doctors. I don't feel I have ever received empathy for my condition. God forbid, I go in when I don't have sleep. I'd rather sit home and suffer than help aid the myth that IC patients are just nuts or strange. I describe how bad my situation is to people and I just get stared at. I have tried heparin before and it has worked but I'm on nothing now. That I didn't have insurance for 8 months and that now it is just medicaid which doesn't cover Elmiron (was on this before) only makes this worse. The coup de gras is that in this city, even finding a place which will let you use a bathroom is hard. Homeless people and addicts misuse them, so the general public is made to pay. For me, it has led to this horrible unrelenting flare up. Forgive my sour attitude, but I am losing my life here by being rendered helpless for really ridiculous reasons.

[Julie B]

I am sorry you are having so much trouble. Have you looked at the list of doctors here on the website to see if there is a better IC doctor you can go to?

Gentle Hugs.....

[Mrs. Peel]

So sorry you are having trouble and sending hugs.

Folks, isn't there a link to public bathroom locations around the country? I seem to remember seeing a post.

[Mrs. Peel]

That came out wrong. Not sorry you are sending hugs, duh. I'm sending you hugs because you might need them, and I'm sorry you're having a hard time in your new city.

[musiclover]

Are you on any meds at all? Will they cover Elavil and Hydroxyzine? I'm on those and although I'm not doing great, they do allow me to function and lead a somewhat normal life and most of all, sleep! You need some relief. Please look into it. Things will get better!

[SharonA]

Here is the link that Mrs. Peel was asking about:

http://www.thebathroomdiaries.com/search.html

[VickiB]

I'm so sorry you're going through this! I can relate to your experience with doctors as I saw more than my share who were not helpful. Some just made me feel bad about myself. I would lose faith and go for years without trying another doctor. This cycle happened many times before I finally found a urologist who promised he'd get me to feeling better. -And he did.

The trick seems to be finding a gem of a doctor among the lumps of coal that are out there practicing! Perhaps this link will be helpful to you: http://www.ic-network.com/professionals/#listings Or you could try asking for a doctor recommendation in the "Meet others by region" section of the boards.

I hope things get better for you soon!

Vicki

[beautifulshades]

O hunny I am so sorry! I know how you feel about the pointing the finger drug seeker tag. I am actually about to sue a ER doctor, story short, she called me a drug seeker in front of everybody...paitents, nurses etc... embarressing and in pain. You really need to find a IC URO/UROGYN that will cater to your needs, and see if medicaid will cover any other IC meds other than elmiron. i am taking Lyrica 50mg 3 times a day and it works wonders. See if your insurance will cover that. I am so sorry you are so miserable, I send warm hugs to you and I understand your bitterness towards doctors, most of them, if they don't specialize in IC, they usually are morons and when you tell them about IC and your symptoms they stare at you with the deer in the headlights look. IT IS FRUSTRATING! Makes you want to smack them on the side of the head and hoping that that may get them to understand. Try taking warm baths, they do help wit the flares.

I send healing thoughts and warm hugs to you, I hope you find relief soon. Feel free to PM me if you have any questions or need someone to talk to.

[akh]

Are you on any meds at all? Will they cover Elavil and Hydroxyzine? I'm on those and although I'm not doing great, they do allow me to function and lead a somewhat normal life and most of all, sleep! You need some relief. Please look into it. Things will get better!

No I am not on those. I am not familiar with them. I would like to learn more.

[akh]

Thanks so much everyone. I've been feeling too bad to even go online. I've been reading a few posts, and from what I can gather other people have issues with doctors. All I know is that by the amount I've voiding my IC is far beyond severe. I can't even meet my needs and go out because I need to be near a toilet. Now imagine having to go a lot and also having people look at you suspiciously every time you walk off to that restroom, or deny you one outright. One time a store told me they had no bathroom. I asked if there was one. The store said there wasn't one in the whole strip development they were in. I asked where the nearest one was; he said in the bar across the intersection. I go over there and the bar/restaurant is closed. Then I go and drive, finding nothing open for miles. I'm sure you've had similar experiences but in Portland the assumption is that people will do criminal things in bathrooms- therefore anyone who needs one may be a criminal. I think this is just wrong.

I've actually hurt my bladder by using a catheter one day so I could go out and get an errand done. When I saw blood in the bag, I felt even more upset. I've been in shock and have lost faith in the world, or at least doctors, as being rational and caring. I use catheters every night now. They just allow me to get some sleep but I know they are making my IC worse. This is all I can do under the circumstances. I don't get any oral medications from my doctor. I think this similar to the bathroom issue. Some people feel safer just assuming everyone is "up to something" these days, and those of us who aren't and lose our lives, our jobs, our sleep and our serenity as a result are the collateral damage.

BTW, I read a story here about a woman who had a doctor who even refused to change the size of catheter he prescribed her, while the size she had was causing her severe pain. It is hard to read all this stuff. It is hard because I know all to well this nightmare is real for all of us. I am sure all of this happens as a result of doctors having permission to regard as all as just hysterical women with an imaginary disease. This gives doctors permission now to complete disregard us, no matter how much need we are in to be helped.

[VickiB]

Yes, there are doctors who are less than helpful, but there are some really good ones out there too.

Have you tried the IC diet at all? Because that's one thing you can do on your own that might just make a big difference. I know for me diet is a major factor in whether I'm in pain or not. http://www.ic-network.com/diet/

I'm sorry you're having such a tough time with this!
Vicki

[purpletomorrow]

How awful, my heart goes out to you.

My dr put me on Remeron, which is Mirtazapine, a tri cyclic anti depressant.

Not only did it help my outlook and mood, but it also calmed down my IC tremendously. And knocked me out so I could sleep at night.

I went from being up every 20 minutes at night, literally, to sleeping 6 hrs before I wake up to pee.

I don't know how anti depressants help an IC bladder but this one sure helped mine.

Maybe something you might want to look into?

Sending you hugs and hoping you feel better soon.

[bluetart]

Yes in the search for a doc that takes you seriously try Hydroxyzine. He/she would have to prescribe that its for inflamation and can make you sleepy. Its kind of like taking a tylenol pm except a lil stronger. I take 25 mg a night. I understand the sleep issues I have them too. I try and find a routine like drinking tea it dosn't always help but i truely hope you get some more sleep soon the better rest you have the more you can enjoy the next day.

[LithEruiel]

I am so sorry you're having such a hard time. I've never been to Portland (I'm assuming Portland, Oregon?), I can't believe it's so bad...come back to Ohio! (just kidding, I live in eastern Ohio.)

Several things in your posts make me so angry - number one that medicaid doesn't cover Elmiron. I know medicaid doesn't want to cover expensive drugs, but Elmiron is the ONLY oral med specifically made for IC! I'm just wondering if you could get it covered with prior authorization or if it's just not covered.

Number two, the bathroom access problem. When I was in San Francisco I had trouble finding public bathrooms, probably for the same reason (and this was before I had IC, so I can't imagine how hard it would be). In the shopping area of Sausalito I remember there were no public restrooms in the stores, just one free-standing one outside with only a few stalls and a HUGE line for the ladies room. I don't understand why places aren't more accommodating (even for those without IC or another bladder disease, everyone still has to go!)

Number three, and the most aggravating - I can't believe your doctor won't give you any oral meds. It sounds like this doctor is one of those individuals that doesn't believe IC is a real medical condition. I know there are people that would find a way to abuse almost anything, but most meds used for IC aren't even controlled drugs (schedules II-V).

The other people gave good advice though - definitely see if there's a doctor near you that's on list on this site. I hope things get better soon.

[mary124]

Having IC is tough enough, but being on Medicaid is tougher! I have a dear friend (who is more like a Sister) that has Fibro and everything else under the sun and is on Medicaid (here in Texas--Austin); and we have been told by doctors in the ER that here is the worse place to have Medicaid-now if she wanted to travel to San Antonio or Houston my friend would be doing great! doctors here are not taking Medicaid for either primary or secondary insurance; just not enough reimbursement for them. She stays with him due to the fact that she can get her pain medications which she really needs.
It has taken her a few years to find a doctor who will treat her conditions but even then I really don't think he knows what he is doing.
Sending lots of hugs your way.

[LithEruiel]

wow, it's supposed to be helping people in need, but it seems like it's the same as not having insurance in some places...

[akh]

Thanks for all the support. The Oregon Medicaid thing involves only one of their carriers rejecting it (Care Oregon). The problem was that this was the only carrier which was available when I applied. The state hasn't seemed to have the funds to have a good medicaid program. I was lucky to get it. This being said, all the annoyances like the Elmiron seems not to surprising.

I response from the woman in Eastern Ohio- Ohio has good Medicaid and I would maybe consider living somewhere else there than Cincinnati. Cincinnati was where I wasn't diagnosed for 9 years.

I looked at the ic doctors list in both Oregon and Ohio. I was disappointed to learn that I just moved away from the Cleveland Clinic. Apparently, that is the place to go! There was just one doctor listed here in Portland, without much info. The past several days I have just been explaining my predicament to my urologist. All I received were referrals. Definitely, this urologist does nothing beyond bladder instillations. No surprise. The urologist who first saw me did the same thing. His were far worse (DMSO, Argyrol). Heparin works for me. The urologist gave me some referrals to external sources for internal medicine. I get the feeling that some doctors who don't take the disease seriously in Portland and just believe in doing the minimal. What leap of faith does it take to believe someone there is also pain with this disease and nocturia (documented symptom) which kinda prevents sleep. I never expected this disbelief after being diagnosed. This article shedded some light on the situation for me, though: http://www.revolutionhealth.com/stories/view/00765700bcbc42c5a0a22218a74cb71d

Thanks so much, again. I will hang in here. I've been exercising and this curbed some of the absolute worst of this. I'm also hitting the books on herbal medicine.

[LithEruiel]

Oh I see. Ohio and West Virginia medicaid both seem ok, but I have seen lots of things not being covered (I've worked in pharmacies in OH and WV). Ohio has Unison, Caresource and Molina and the regular medical card (although I think that's only for transition to one of the other plans.) I've seen people moved around between plans a lot and what they were taking on one isn't covered on another or they expect them to redo step therapy. A lot of people also don't seem to know why when we bill their insurance it says they're no longer covered - I don't know why. Might be a lack of communication with their case worker.

I lived in Columbus for awhile, but I wasn't diagnosed there either, so the only doctor I know is the one I go to here. It was hard to get into any doctor I tried in Columbus...

Well, whatever you decide I hope you feel better soon :)

[akh]

I discovered today that OHP (Oregon Health Plan) can be petitioned by a doctor. I had my primary care doctor petition OHP today for the Elmiron I need (will see if this works).

[akh]

Oh I see. Ohio and West Virginia medicaid both seem ok, but I have seen lots of things not being covered (I've worked in pharmacies in OH and WV). Ohio has Unison, Caresource and Molina and the regular medical card (although I think that's only for transition to one of the other plans.) I've seen people moved around between plans a lot and what they were taking on one isn't covered on another or they expect them to redo step therapy. A lot of people also don't seem to know why when we bill their insurance it says they're no longer covered - I don't know why. Might be a lack of communication with their case worker.

I lived in Columbus for awhile, but I wasn't diagnosed there either, so the only doctor I know is the one I go to here. It was hard to get into any doctor I tried in Columbus...

Well, whatever you decide I hope you feel better soon :)

Wow, well that would leave Athens (SE Ohio), Cleveland and Dayton. Hmmm. Yes, Cincinnati is an issue for me. I had only one doctor there which took seriously how I had trace blood in my urine perpetually. He was pretty nice. It was no surprise to me to learn he didn't treat IC. I didn't resent this guy. I just think he didn't connect the dots. He thought I may have had bladder cancer which did lead to my eventual cystoscopy. I don't even want to think what the result would be if the cystoscopy never happened.

The rest were dismissive or worse. This wouldn't be an issue if most all the urologists now in Cincinnati weren't absconded by a conglomerate, The Urology Group. I had issues with one doctor there who was actually pretty rotten to me.

[LithEruiel]

I'm sure there are good IC doctors somewhere in Columbus, but I didn't find one when I needed one. I live in a small city (19,000 people) and I like my doctors here. I guess for one thing my mom knows the doctors here because she works at the hospital, so she could recommend good ones. When I was in Columbus I just was picking names off my insurance company's website. I did pick a good dentist, but the rest of them, ugh...

[akh]

Thanks for the suggestion. I'm not doing well at all. Each day I get told no in so many ways. I had my hopes up for a referral to a new urology clinic but was told the doctor wasn't taking new IC patients- I get referred to their alt medicine practice that doesn't take my insurance. Oh, I'm having to live and function with a foley catheter. It is making things worse, but I void so much I can't do anything, incl. sleep. What exactly will catheter use do to an IC bladder?

[LithEruiel]

I'm sorry you're not doing well. Do you have to have a referral to a urologist for your insurance to payor can you go on your own? I don't really know anything about catheters - hopefully someone here will. I know what you mean though, I'm so sick of the going all the time sometimes I think it'd be "nice" to just have a catheter in.

[akh]

I'm sorry you're not doing well. Do you have to have a referral to a urologist for your insurance to payor can you go on your own? I don't really know anything about catheters - hopefully someone here will. I know what you mean though, I'm so sick of the going all the time sometimes I think it'd be "nice" to just have a catheter in.

I have had actually an increase in IC symptoms permanently from catheters. However, right now they are the only way I can sleep. I'm still getting occasional heparin, but even with this now, my flare up is too bad to get sleep. I know when I stop using the catheters I will get real healing. It happened before. Unfortunately, I had a crazy partying neighbor and their tendency to awaken the neighborhood with music trashed my sleep, and then my recovery the last time I ran a heparin course. I've been reading about home bladder instillations. The thing that amazes me however, is that most all my hell is from not getting just a little help when I need it. Having a disease which some people think isn't real is part of it. So much arrogance and ignorance surrounding a disease. Hmm.

[ICNDonna]

I hope you can get some relief soon. Is your doctor ordering the catheters for you? They do increase the potential for infection so you need to be very cautious about using them. Hopefully the elmiron will be approved soon so you can go back to it. In the meantime, something like elavil might help with sleep.

Donna

[Cathyp20]

http://www.outsidein.org/clinic.htm for under 30 years of age

http://www.coalitionclinics.org/

http://www.freemedicalcamps.com/vcamp.php?cityid=1696

Maybe you could try some of these. Cathyp20

[maryla]

AKH,

I go to Dr. Keys that is in The Urology Group and I love him! But I have been to another in TUG that put in my interstim, that was very arrogant to say the least and I would not recommend him.

If you decide to move back to Ohio and want his number just pm me.

Hope you feel better soon!

hugs and blessings

[akh]

I hope you can get some relief soon. Is your doctor ordering the catheters for you? They do increase the potential for infection so you need to be very cautious about using them. Hopefully the elmiron will be approved soon so you can go back to it. In the meantime, something like elavil might help with sleep.

Donna

My doctor is ordering the catheters. However, he isn't prescribing antibiotics and when I called in for one, the on call doctor refused to give any over the phone. She says to call the next morning. I tell her I'm in severe pain- and get nowhere. I call the next day and get some story about how you don't have to worry about infection about cathing at home, since it is only your own bacteria (?!) involved with the infection. Huh? I understood you can get E coli, a common uti bacteria, from even taking a bath since human waste will have this present (not urine). I am completely fed up with this urologist beyond words. I wouldn't be having this bad IC right now if he took care of me. I went in with no sleep because he wouldn't help me with that end, and now I fear that being in this shape even undermines my credibility more.

I don't want to talk about how bad I'm feeling and 8 months ago I was fine. I hate doctors sometimes.

I found this article. It is very enlightening. Let me know what you think.
Overactive Bladder or Interstitial Cystitis? (http://www.ask.com/bar?q=why+do+doctors+think+interstitial+cystitis+is+in+people%27s+heds&page=1&qsrc=0&ab=4&title=IC+Hope%3A+Overactive+Bladder+or+Interstitial+Cystitis&u=http%3A%2F%2Fwww.ic-hope.com%2Foveractivebladder.htm&sg=KxXVIsg3jSnaSy1LqLAQGrdaai0SBsVuv7CTVGolRB8%3D&tsp=1256046218380)

[maryla]

[QUOTE=akh;511895]My doctor is ordering the catheters. However, he isn't prescribing antibiotics and when I called in for one, the on call doctor refused to give any over the phone. She says to call the next morning. I tell her I'm in severe pain- and get nowhere. I call the next day and get some story about how you don't have to worry about infection about cathing at home, since it is only your own bacteria (?!) involved with the infection. Huh? I understood you can get E coli, a common uti bacteria, from even taking a bath since human waste will have this present (not urine). I am completely fed up with this urologist beyond words. I wouldn't be having this bad IC right now if he took care of me. I went in with no sleep because he wouldn't help me with that end, and now I fear that being in this shape even undermines my credibility more.

I don't want to talk about how bad I'm feeling and 8 months ago I was fine. I hate doctors sometimes.

Who is this URO???? I was told by one of the top experts of IC that I should always have a script for antibiotics. Especially when doing home instills and cathing every day.

I am so careful cathing, but I still get uti's. Actually I am just getting over one.

I order my caths (low fric, mens) through the mail and they come with individual steril kits of gloves, prep pads, and I still get uti's.

My uro just say's "you know your bladder better than I do." Which is completly true. And I appreciate his trust in me.

I think I would look for a new uro ASAP. We have a huge responsiblity when dealing with IC, why make a bad situation worse by dealing with crappy uro's?

Very interesting acticle. I was just d'xed a little over 5 yrs ago. but have been d'xed with everything but IC since my late teens. And yes, I do believe that it was IC all along. (I'm 53 now) And sometimes I get sooooooo angry! I think that "IF" maybe I would have been treated way back when, my bladder wouldn't be in such a bad shape. So, you know now why I have such miss trust over URO's. I do a lot of research and basically know how I should be treated.

I hope you find help soon. Hugs and blessings

[jvr]

Hi Akh,

Sorry things are so tough for you right now:( I hope things get better soon...

Jill

[akh]

Who is this URO???? I was told by one of the top experts of IC that I should always have a script for antibiotics. Especially when doing home instills and cathing every day.

I am so careful cathing, but I still get uti's. Actually I am just getting over one.

I order my caths (low fric, mens) through the mail and they come with individual steril kits of gloves, prep pads, and I still get uti's.

My uro just say's "you know your bladder better than I do." Which is completly true. And I appreciate his trust in me.

I think I would look for a new uro ASAP. We have a huge responsiblity when dealing with IC, why make a bad situation worse by dealing with crappy uro's?


Two reasons: One being that I've never had a nice urologist to treat my IC. I have gotten nothing but crap. This guy does a bladder instillation which works; I decide to swear by the guy to get the heparin. I know well how much more rotten doctors can be, so I just take what I can. Then I pay now. BTW- I did have a uti. This and the catheter caused renal colic in me yesterday. Now my ureters are getting messed up.
Crappy urologists and crappy insurance go hand in hand. This Dr. wouldn't prescribe pain medication, refers me to a pain clinic and the medicaid refuses to pay for pain clinics. It won't pay for elmiron.

Oregon is really creepy. For one, with their covert war on their drug problem I am having my life destroyed. A bathroom card isn't going to fix things. I can barely go anymore in public because I tense up and my bladder won't relax. The main reason being because having store clerks eye me suspiciously for wanting to use the restroom. For real, these people are terrified everyone using a bathroom is some kind of criminal. Some even hover outside the door. I want to leave this place. It is expensive, the culture has these troubling things going on which can destroy an IC person. I say good riddance.

How's Columbus this time of year? I have a friend living there. No, Oregon isn't worth the pricetag.:tsk:

[cowdean]

Try Elations . I tried this in August 09 and I used the bathroom every 15 minutes all day and night long. I go every 2-3 hours now. My bladder used to bleed when I had flares which were just about every day. I have had maybe 2 flares in the last 2 months. I can sleep 6 hours before needing to use the bathroom and I actual have lots of urine coming out. I was in pain and miserable in July of this year I am now in remission thanks to elations drink every 2 days. Check out the web page.

Nicole

[maryla]

AKH,

Columbus is beautiful anytime of the year. I love it there. It's about an hour and half from where I live..........Go Bucks!!!!

hugs and blessings

[LithEruiel]

akh,

If you can find a doctor to prescribe Elmiron, you can probably get on the Patient Assistance Program. You'd just have to tell them that your insurance won't cover Elmiron. I hope you're feeling better soon with the UTI gone.

I think Columbus is too flat (*L* I'm from the hilly part of Ohio), but there are many nice safe parts and they let you go to the bathroom! :)

[arianag]

I HAVE MSI KINDA LIKE MEDICAL AND NO THEY DONT PAY FOR SPECIALIST AND ITS HARD TO COME BY ONE.

BUT THEY DO PAY FOR ELAVIL AND OXYBUTIN AND OTHER IC MEDS WE USE.

NO THEY DO NOT PAY FOR ELMIRON OR INSTILLATIONS.

BUT IF YOU BUY ONLINE FORM CANADA U CAN BUY 100 CAPSULES FOR LIKE 150. RETAIL PRICE AT THE PHARMACY WITHOUT INSURANCE IS 400.

ANOTHER OPTION IS TO USE HOMOPATHIC MEDICINE WICH MEANS USE SUPPLMENETS THAT ARE WAY MORE AFFORDABLE THEN ELMIRON. MIGHT TAKE LONGER BUT ITS WORTH THE TIME. GOOGLE BLADDER EASE, OR CYSTA-Q, OR CYSTOPREK...GOOD ONES!

ALSO DOING YOGA, LIGHT WALKING, MEDITATION, BREATHING TECHN. ARE ALL LOW COSTS TO DOING MORE PRICER THINGS LIKE PELVIC FLOOR THERAPY OR ACCUPUNTURE...

I HAVE NO MEDICAL INSURANCE AND ALTHOUGH MY IC IS MILD I AM GOING TO GET BETTER, AND I HAVE FAITH THAT I WILL BE IN REMISSION SOON, THIS IS COMING FROM AN IC PATIENT IS HAS MILD TO SEVERE IC AND VV! AND YES I HAVE A SOCIAL LIFE AS WELL!

KEEP HOPE!:angel:

[akh]

Try Elations I tried this in August 09 and I used the bathroom every 15 minutes all day and night long. I go every 2-3 hours now. My bladder used to bleed when I had flares which were just about every day. I have had maybe 2 flares in the last 2 months. I can sleep 6 hours before needing to use the bathroom and I actual have lots of urine coming out. I was in pain and miserable in July of this year I am now in remission thanks to elations drink every 2 days. Check out the web page.

Nicole

Wow, you are like me!!! Yes, I too actually void large amounts of urine!!! Most everyone assumes you just *feel* like you've got to go and don't get this can happen. I haven't met an IC with this too, so this is great. I could prove my IC just by volume of urine I pass. Yes, I absolutely HATE this urologist.

[LithEruiel]

I void moderate-large amounts too most of the time. I drink lots of water... it makes me go more, but my sinuses are always very dry and I hope it also helps to make my urine less acidic. I still have to go more than I should though if I didn't have IC. It seems even if I drink much less water (or other drinks) I still void the amount everyday...I don't understand why.

[akh]

I void moderate-large amounts too most of the time. I drink lots of water... it makes me go more, but my sinuses are always very dry and I hope it also helps to make my urine less acidic. I still have to go more than I should though if I didn't have IC. It seems even if I drink much less water (or other drinks) I still void the amount everyday...I don't understand why.


Yes, that has been the problem for me. Doctors don't believe me when I tell them. I am seriously concerned I am going to make it. Now, I'm in chronic devastating pain, I'm going every 30 seconds, my bladder is inflamed and spasming and I'm so broke I can't afford to do laundry, get gas. I went to my GP and got some medications, one for sleep, one for spasms, but had to pay for them (useless insurance). No one will take this seriously, not family, not friends and certainly no doctor I've been to. Oh, and sleep? We won't discuss how bad I need it now. The rotten part of that is that no one takes my need to sleep seriously. Doctors, especially. My memory is falling apart under the duress, as well as everything else. I'm terrified. There is no where I can go out here that I know of, and getting somewhere else is impossible, even with money because I'm so sick. I don't know how to make anyone wake up. I talk to IC people and they say their husbands help with stuff. That does no good for me. I need an advocate. My insurance wouldn't offer one. I'm screwed. All dietary, and herbal things are failing and I can't get enough money to even get them now.

I went to the ER to no avail. Was referred back to my urologist (!). Was told I need to see "specialist." Fine. We have a disease where we should have emergency treatment. A urologist/specialist, is going to have you wait for at least a month. We're stuck with being referred, and made to wait like we were just going in for plastic surgery. I don't think they care if I die. They've made up their mind, they'll beat me up through not helping with the simplest stuff, then they will use the shape I'm in, poor, broke, disabled and capitulating from lack of sleep to beat me up more, or justify their neglect in the first place.

What does it take to change things?
Why do they do this to us?
If someone is prejudiced by a lie about a disease, will they ever take it seriously?
Is this because we are mostly women?

I have no faith in people any more.
For me, I see no way out because no one who can help me now takes IC seriously. I need someone who isn't ignorant or biased. I've done nothing wrong to deserve this. There isn't even an enemy I've had I've wish this on.

[LithEruiel]

I'm so sorry things are so bad. I know what you mean...I'm not married and I'm broke too...I'm going to school (the 2nd time around) to try to get a decent job, but I'm going to be in even more debt when I'm done (I'm already $30,000 in student loan debt for a degree I can't use and will have about $20,000 more when I'm done with this). I don't know what I'd do if I end up not being able to work because of IC or something else...it's not like I have a husband to rely on (well even if I did, what if he lost his job or got sick or whatever, then what?) I have to rely on myself. I'm lucky that I have family that understands and a doctor that's knowledgeable about IC - though I don't think there is anything that can be done about this frequency that disrupts my life...

I really don't understand why this disease is treated this way. What other disease is this devastating and painful that doctors just dismiss as something that's not important or that's in someone's head? There were/are people out there working on a prescription drug to make eyelashes longer, yet a serious disease like this is largely unrecognized. It makes me very angry too. I wish there was something I could do to help you.

[akh]

I'm so sorry things are so bad. I know what you mean...I'm not married and I'm broke too...I'm going to school (the 2nd time around) to try to get a decent job, but I'm going to be in even more debt when I'm done (I'm already $30,000 in student loan debt for a degree I can't use and will have about $20,000 more when I'm done with this). I don't know what I'd do if I end up not being able to work because of IC or something else...it's not like I have a husband to rely on (well even if I did, what if he lost his job or got sick or whatever, then what?) I have to rely on myself. I'm lucky that I have family that understands and a doctor that's knowledgeable about IC - though I don't think there is anything that can be done about this frequency that disrupts my life...

I really don't understand why this disease is treated this way. What other disease is this devastating and painful that doctors just dismiss as something that's not important or that's in someone's head? There were/are people out there working on a prescription drug to make eyelashes longer, yet a serious disease like this is largely unrecognized. It makes me very angry too. I wish there was something I could do to help you.


Yes, for my frequency DMSO reduced it for a few days for me. I had a rough weekend from it though, when I ate something bad. I could try that again. I actually have a bottle of it (can buy it for $20 at health food stores here!!!). I'm getting the nerve to give it a go. I'd better check out the home instil section. 99.0 percent DMSO is what it says on the bottle. I've gotta make this stuff sterile maybe.:confused::confused:

[LithEruiel]

hmm, I don't know anything about instills.... I'd say ask your doctor, but we know how that goes...

[SharonA]

akh...I don't think it is a good idea to use DMSO at 99% strength. Most doctors who do DMSO instills dilute it to at least 25% of the solution. They mix it with other things.

Please, before you try doing this yourself, talk with your doctor. If that is impossible, then talk with your Pharmacist. Find out what mixture is recommended as an instill. Don't do this without some knowledge about it. Don't experiment on yourself.

[LithEruiel]

Yeah, that's a good idea. Even if the pharmacist isn't that familiar with it, they have good resources to look it up, like Clinical Pharmacology.

[maryla]

AKH,

I 2nd that!! Yes, I would be careful of experimenting. If you do instills? The safest thing I can suggest is about 60cc's of distilled water and about 1000mgs of Chondrodin sulfate. But I still would call my uro to ask first though.

I pray that you get some relief and that you can move back to Ohio ASAP and get on some type of regular treatment regimen.

Hugs and blessings

[akh]

akh...I don't think it is a good idea to use DMSO at 99% strength. Most doctors who do DMSO instills dilute it to at least 25% of the solution. They mix it with other things.

Please, before you try doing this yourself, talk with your doctor. If that is impossible, then talk with your Pharmacist. Find out what mixture is recommended as an instill. Don't do this without some knowledge about it. Don't experiment on yourself.


I didn't plan to, but I've been in excruciating pain and have been considering it. I think I will ask the pharmacist, since I'm not sure the doctor seems to know much about IC. At least there are no other fillers and chemicals in it, which is why I listed the purity of the DMSO.

[akh]

AKH,

I 2nd that!! Yes, I would be careful of experimenting. If you do instills? The safest thing I can suggest is about 60cc's of distilled water and about 1000mgs of Chondrodin sulfate. But I still would call my uro to ask first though.

I pray that you get some relief and that you can move back to Ohio ASAP and get on some type of regular treatment regimen.

Hugs and blessings

Thank you so much, I agree- Ohio could be an improvement. My friends miss me and black mold has taken over the back of where I live thanks to NW rain and stuff (don't ask, very bad sealing off rooms- its a toxic mold and can affect health- don't know about IC, but...)

I have no idea what Chondrodin Sulfate is.

[akh]

Sorry if I offended anyone. I don't know what to do, no one will help me. I'm being bled to death financially and I don't see a future here. I don't know if I can get well enough or get enough money to move but I have to get out of here. I don't want to go back to Cincinnati. My mom doesn't believe I have IC and my Dad and her have done some diabolical things to me in regards to this. She refuses to read about the disease or help me. I have a cruel family and this makes me wonder what the odds are of me surviving.

[purpletomorrow]

akh,

You poor thing, my heart goes out to you. Most of us here know the frantic misery you're describing. I hope you can get through it and begin to heal.

From the CystoProtek website comes this:

Chondroitin Sulfate - One of the main components of cartilage and mucosa layers, forming the connective tissue that holds muscles, nerves and blood vessels together. As such, it is a major component of the protective glycosaminoglycan (GAG) layers of the bladder. It also inhibits the release of proteolytic enzymes that cause tissue damage.

Here's where it's from: http://www.cysto-protek.com/ingredients.html

If you take Chondroitin Sulfate orally, when your body excretes it through the bladder, it apparently helps to re-line the bladder. Healing the lining allows it to heal.

Are you on the IC diet?

http://www.ic-network.com/diet/2009icdietlist.pdf

Can you get some supplements to knock down the pain and irritation so your bladder can begin to heal?

http://www.icnsales.com/PRELIEF-p-1-c-105.html

http://www.cysto-protek.com/

http://www.icnsales.com/CYSTOPROTEK-p-1-c-100.html

https://www.desertharvest.com/shop/i...on=show_detail

I'd also recommend an anti-histamine that would stop histamine from assaulting the bladder.

http://en.wikipedia.org/wiki/Hydroxyzine

And also a tri-cyclic antidepressant like Elavil or Remeron to lessen the pain messages that reach the brain, and make you drowsy, so you sleep.

http://en.wikipedia.org/wiki/Elavil

Good luck to you, let us know your progress!

[jvr]

Hi Akh,

You're life is very much worth living! When I was at my worst, there were many times that I just wanted to die literally. Sometimes when I was feeling terrible, it was difficult to see any joy in my life. I do physically feel much better now and am glad that I'm still around to enjoy life. I've since married and have two beautiful babies. It will get better! I understand also about the family members not be so supportive too. My stepmother once told me that everybody has a little pain and to just deal with it. My dad and one of my sisters were the only ones that really seem to be concerned at the time. All the rest just never really got it and still don't get the magnatude of IC. It is frustrating.:bonk: Many of us have been in similiar situations. Try to hang in there and know that it can and will get better.:) Also, come here if you need support, you know many of us here understand. I'm saying a prayer for you, I know it's a tough place to be:pray:

Jill

[maryla]

Ach,

It would be my guess that YES the mold can also harm your bladder. Have you read anything about mass cells in the bladder and the connection with allergies? Some of my worst days are when the pollen is heavy so I take more atarax.

I know all about how family members and friends can be. My husband's family doesn't believe that I"m sick, they think I'm just lazy:loco::loco: When I look at them, I just have to remember to consider the source. And realize those are people that really do not know me. If they did that would have never entered their thoughts. I choose to just stay away from people who aren't conducive to my trying to get better.

Here's to a better day. I do wish there was some way I could help you, but right now, I'm a full time 24/7 job myself.

hugs and blessings

[LithEruiel]

Sorry if I offended anyone. I don't know what to do, no one will help me. I'm being bled to death financially and I don't see a future here. I don't know if I can get well enough or get enough money to move but I have to get out of here. I don't want to go back to Cincinnati. My mom doesn't believe I have IC and my Dad and her have done some diabolical things to me in regards to this. She refuses to read about the disease or help me. I have a cruel family and this makes me wonder what the odds are of me surviving.

I really don't think you offended anyone, we all understand what you're doing through. Can you stay with a friend in Ohio for awhile? Maybe they can help you figure out a way to move. I hope things get better soon.

[akh]

akh,

You poor thing, my heart goes out to you. Most of us here know the frantic misery you're describing. I hope you can get through it and begin to heal.

From the CystoProtek website comes this:

Chondroitin Sulfate - One of the main components of cartilage and mucosa layers, forming the connective tissue that holds muscles, nerves and blood vessels together. As such, it is a major component of the protective glycosaminoglycan (GAG) layers of the bladder. It also inhibits the release of proteolytic enzymes that cause tissue damage.

Here's where it's from: http://www.cysto-protek.com/ingredients.html

If you take Chondroitin Sulfate orally, when your body excretes it through the bladder, it apparently helps to re-line the bladder. Healing the lining allows it to heal.

Are you on the IC diet?

http://www.ic-network.com/diet/2009icdietlist.pdf

Can you get some supplements to knock down the pain and irritation so your bladder can begin to heal?

http://www.icnsales.com/PRELIEF-p-1-c-105.html

http://www.cysto-protek.com/

http://www.icnsales.com/CYSTOPROTEK-p-1-c-100.html

https://www.desertharvest.com/shop/i...on=show_detail

I'd also recommend an anti-histamine that would stop histamine from assaulting the bladder.

http://en.wikipedia.org/wiki/Hydroxyzine

And also a tri-cyclic antidepressant like Elavil or Remeron to lessen the pain messages that reach the brain, and make you drowsy, so you sleep.

http://en.wikipedia.org/wiki/Elavil

Good luck to you, let us know your progress!

Yes, I'd try the herbals but I'm not sure I can afford them at this point. It's odd but I have Hydroxine- just a few pills, no refill. My GP gave them to me for sleep and said she heard, "They are supposed to help with IC" but she didn't know or tell me how or why. I just took one. Thanks. Seems my GP is smarter and more concerned than my urologist. :rolleyes:
Yes, it is sleep deprivation which is making me lose perspective; I now have anxiety when I'm sleep deprived and am far less able to whether it than when I first had the disease.

I had more sleep but pain woke me up. I was actually dreaming about the pain right before it woke me. Someone told me to get a smaller catheter. That's another thing I'll try. For months, I've been going to the bathroom every 3 minutes at least half of the day, lack of sleep I know worsens frequency. I have severe ic. Lord, I need sleep, and am so worn out.

The article I posted in a previous post in this thread on Overactive Bladder and IC said overactive bladder patients endured similar marginalization by doctors until the past several years. What changed things for Overactive Bladder patients according to the article was drug companies coming out with new products for it and with the way the pill companies have so much sway these days, the doctors changed their attitude towards overactive bladder. It makes me think that if even a marginally helpful IC drug was marketed and profitable for a company, that this would change the bias toward IC. I'm giving up the medical community itself fixing this for us.

[akh]

I really don't think you offended anyone, we all understand what you're doing through. Can you stay with a friend in Ohio for awhile? Maybe they can help you figure out a way to move. I hope things get better soon.

Possibly, but only in Cincinnati. A close friend of mine from many years ago is there in Columbus. I'd have to get lucky to both find her # and hope her number has stayed the same. Her parents moved so I can't call them and find out what she's been up to.

[LithEruiel]

You could search for her online. Try whitepages.com. I found someone's home phone (I only had their cell phone #) on one of those sites when there was an emergency once, but I imagine the info on those kind of sites could easily be abused too!

[akh]

Hi, sorry I left you all hanging. I have a proper IC doctor now finally. She's great! She knows all about it, advocates for it and studies the latest research!!!:hi:

I had my first visit. I have severe IC and it may take time to recover. I also have a bad UTI, but this was the first time I went to a doctor and was treated with the respect that we all deserve. THANKS. I am indebted to you all for helping and all this pain has led me to atleast learn a thing or two.

Here's some good news: apparently it isn't the acidity of cranberry juice which makes it fight bacteria. This may mean alkalizing cranberry juice will not reduce its efficacy:

http://www.sciencedaily.com/releases/2009/03/090309121937.htm

Also, someone who doesn't have IC but has tried to help me bungled upon the known fact that cats get IC:


http://cat.inist.fr/?aModele=afficheN&cpsidt=1048450

http://www.ncbi.nlm.nih.gov/pubmed/14634458:cat:

It is documented that many IC patients have low body temperatures. I do and have had a low body temperature my whole life. I inherited this from my mom and everyone mentions how are hands are so cold all the time. She's been diagnosed with a thyroid condition too. Article here:

http://www.moonstar.com/~icickay/articles/ic_temp_thyroid.pdf

The really strange thing is that body temperature anomalies are present in felines with IC:

November 19, 2009

Hello,
My name is Tony Buffington. I have been studying interstitial cystitis (IC) and related disorders for some 15 years in both cats and humans. We recently observed a very interesting difference between cats with IC and healthy cats – that their body temperature is higher by nearly a degree centigrade (~ 2 degrees Fahrenheit). The difference does not seem to be caused by stress or any “flare factor” that we can find, and does not seem to respond to any of the common drugs one might use to reduce their temperatures. Additionally, when they are psychologically stressed (10 minutes of water avoidance), their temperature increases about another degree, whereas temperatures don’t change in the healthy cats under the same circumstances (in fact, most of them play in the water).
Temperature is regulated by many factors both outside and inside the brain, so we thought that the observation might help us learn something useful about the cause(s) of IC. We got so excited about this finding that we submitted an NIH grant to study it further. They responded enthusiastically, but didn’t fund the grant because we didn’t have any data showing temperatures in humans with IC to prove that this occurs in people as well as cats. I’ve asked a number of my IC friends, and it sounds like it might, so I’m asking for your help to collect enough information to determine if this is worth pursuing. The attached document describes a standard method of measuring your body temperature during a 5 day period (to get a reasonable average). If you would like to include information on whether you have had your uterus and/or ovaries removed, are on any ovarian suppression therapy, and the share the number and nature of other IC related diagnoses and their treatment status this could be helpful, but is not necessary.
Please know that your participation in this survey is completely voluntary, and that I will completely and permanently remove all personal identifying information before compiling the results. Thank you for considering this request. If you have any questions or concerns, please do not hesitate to contact me at Buffington.1@osu.edu. The survey can be returned to me either by e-mail or regular mail (to my attention at the above address).

Thank you for your time, Tony Buffington



Sorry about the lack of link. This came up in a search engine as a Word file. However, these are the search terms I used and this was posted by an IC group in Columbus: "tony buffington veternary medicine interstitial cystitis cats." Buffington is a veterinary interstitial cystitis research.

Now, this next link is interesting. Both the articles on body temperature is interpreted by some researchers that pathogen is involved. It seems plausible since body temperatures are elevated during fevers for the sole purpose of making the body uninhabitable by pathogens. However, it could also mean thyroid dysfunction since low body temperature and thyroid problems are very much linked. I didn't test positive for thyroid problems. Yet I gain weight with ease and suffer from other symptoms related to a bad thyroid. My mom has a thyroid condition which is diagnosed and suffers from the same symptoms as I. Some Dr.'s say that thyroid problems also involve the body's ability to absorb the thyroid chemicals and not just a defective gland.

I found this very strange site on IC research on possible pathogens. One urologist found issues with the methods and logic which most urinary infections are diagnosed. He used a new, more thorough method which indicated some infections in IC patients. The odd thing is he has a high success rate for treating some women with anti-biotics. It sort of reminded me of how my GP in Ohio gave me Macrodantin (spelling?), an antibiotic said to help IC symptoms:
http://www.moonstar.com/~icickay/

I also thought it would be helpful to understand better how it is that we still are misunderstood with our disease. This book shows the insanity to which this disease was judged even as recently as 1986.
Google Book (http://books.google.com/books?id=CQ9DCcytJFwC&pg=PA213&lpg=PA213&dq=disbelief+in+interstitial+cystitis&source=bl&ots=ZkVhBooJGp&sig=88NX7X1SQyuWIby0W1sfz9Ncxcc&hl=en&ei=1kx3SuiZG42usgOzvKHqCA&sa=X&oi=book_result&ct=result&resnum=7#v=onepage&q=&f=false)


Leaving this on a positive note, I found this very handy thing to enable more mobility with IC frequency. It was a novel idea and product I found by accident of all things: http://www.biorelief.com/store/stadiumgal.html

[akh]

Sorry to post this all here but for some reason I'm not permitted to start threads yet. :confused:

[LithEruiel]

that's great news AKH!!!! I'm so glad you found a good doctor. And very interesting info, thanks :)