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Do you suffer from chronic pain?
Learn how straightening up can ease your pain
Chronic pain management tips
Learn how straightening up can ease your pain
Chronic pain management tips
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I really need advice. I am so lost.
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Hi, I am glad I found this group. Thanks for having me.
I have been diagnosed with ic about 2-3 months ago. How it happened for me is I literally was going to bed one night and felt a uti coming on. I had the having to go to the bathroom a million times going on, pain, burning, etc. I went to the outpatient er that night because it was worse than any other uti I ever had. They just gave me pyridium and told me to go to my reg dr in the am. I did, tested positive for a uti and got antibiotics. Went through the course of the meds, I got better a few days into treatment. Then as I finished the meds, three days later it was back again full on. I freaked b/c that had never happened to me before. So they gave me shots of antibiotics, more pills, etc etc. I went through that about 4 weeks. And the repeat infection would come back like a charm after 2-4 days after I stopped. Some cultures started to come out negative towards the end of it. But the next day it would be positive on all accounts. So they were confused, sent my labs off to get better testing and it was negative both times. So they started to suspect ic. I didn't know what it was, that it was chronic or anything. I was still convinced that I had a uti or cancer, honestly. I was freaking out. Long story short, I had 3 diff doctors tell me it was ic. Then I finally went to the urogynocologist here and made an appt. She said she wanted to test me with a cystoscopy but that she was pretty certain I had IC. Had the cysto done with light hydro, no anesthesia or anything, right there in the office. And she diagnosed ic and cultured my urine and it was negative from the first appt. She gave me a big folder of info and sent me home. I got home, read the info and freaked out, bad. I had no idea that I was dealing with an incurable, debilitating disease. I had no idea or warning that I was going to have to change my diet and to what extent. That I wasn't ever going to get better. I got depressed and really down. I pouted about the food, cheated on the diet, went into denial, refused to accept it and then finally came to terms with it later. So I am not in denial anymore. But I am still scared and not well. The doctor started me on uribel and elmiron. As well as vesicare, then switched me to detrol la when that didn't work. Enablex was tried with my gp during the "uti" phase and didn't work. Toviaz gave me long qt syndrom so I had to stop it. And now I am on gelnique topical for the leakage and frequency issues. So far it works better than the others but I am STILL having to run to the bathroom either every 5 mins. Or sometimes it kindly allows me 40-60 minutes before I have to go. I never know. Diet so far doesn't seem to make any difference to me. I am still following it of course, but it hasn't made anything any better . I have noticed no change at all no matter what I eat. Or if i even eat at all. She also gave me valium for pain to administer vaginally. It seemed to work at first like the first couple of weeks and then it just stopped towards the end of the second week it seemed. Maybe I was wrong and it was working better than I thought b/c when I stopped all kinds of crazy started happening to my bladder it seemed. Or it could be totally unrelated, i don't know anymore. I just know that despite the diet, rest, medication and all that good stuff about a week ago my bladder went nuts. It seems the only thing that stops the spasams, pain, urgency, etc is vicodin. I know it is weird and it still doesn't "fix" it nearly enough for me to function. It is just a bandaid of sorts I think is the best way to describe it. Well when I ran out of valium and felt it wasn't working is when they gave me the Vicodin. When that ran out, I expected they would give more since I was still hurting. Wrong. Next thing I know I am seeing the nurse practitioner instead of my dr. And she is refusing to give me any narcotics and is treating me like I am a drug addict. I am not a drug addict and never will be but I needed help for pain. I was scared to do the instillation's with heparin and the hydro in the hospital. I was hoping to avoid the more invasive procedures. But I realized that it wasn't going to "pass" with just the meds. So I gave in and said I'd do the instillation's. So I did the first one on Thursday last week. It helped a lot but it wears off like the same day, at least it did for me. I was able to hold it in for an hour, which was a BIG deal from the every 5 minute hell I was in. I have to do them 3x's a week now for two months. The np refuses to give me any pain medication that is narcotics. So I am freaking out because Motrin and stuff like that doesn't work at all on me. I have a very high tolerance for medicines of all kinds. And pain medications have that same effect where it just doesn't work for me like other people. It is like my body fights it off or something. Is anyone else like this? Has anyone else's doctor refused to give pain meds that work? If so, what have you done? So that leaves me with this: no pain meds that work, so I am in pain all day everyday. I have urgency BAD. And I run to the bathroom anywhere between every 5-10 minutes to every hour roughly. But it is all day like that. I cannot function like this. I am a mother to a wonderful 10 year old boy who needs his mother back on her feet. My husband is overseas in the navy so I have to do this alone with our son. My leakage is out of control it used to just drip but now I feel it run down and had to go up in absorbency in pads. So I am scared it won't stop or go away since all the meds don't seem to be working(leakage and urgency). I feel like I am going to go crazy because I cannot take this feeling. And now I don't feel like my dr is helping me or thinks ill of me when it is not the case. They're not nice to me anymore. I'd read things online like a pap smear causes flares. I'd ask them about it and they would say no it doesn't. Despite me seeing that it does and also common sense considering how I am without being poked and felt around. They don't treat me well I feel because if you question them or tell them you're not ready to do something yet because you're afraid or don't trust them because of all the conflicting information...they seem to punish you for not doing what they want. That is why she told me she wouldn't give me any narcotics, if I don't agree to do the invasive treatments first. So now I am doing these treatments, they don't test my urine for UTI's during all this, they don't explain anything and even one of the nurses won't work with me at all anymore because I question things and want to know about what it will do, how it will work, side effects, interactions with meds. risks, etc. They get upset when you ask. There aren't really any other doctors I've seen here in SC that specialize in this. And I am scared because I don't want to have to drive far with the way I feel. I really need help. I don't understand what is happening to me. Like, does anyone else have ic like this? What have you done? Have you had issues with your dr? Does my dr seem to be doing similar to yours? I just don't know how to feel and any advice would be so wonderfully appreciated because I feel like giving up on life and I feel like I will never live or function again. I am scared and lost. Posted on 06/10/12, 03:15 am |
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I did many ultrasounds to rule out kidney problems, endometriosis, and pelvic inflamatory disease. I actually went under treatment for pid, bc the pelvic ultrasound showed thickened fallopian tubes. My gyne didn't actually seem to think that i had pid though and she left in my Iud. I went to urologist who ran some test and said I had some residual void. He put me on vesicare which did nothing. when I went back he tried telling me to double the dose. I went back to my PCP who recommended I see a urogynecologist . The urogynecologist did a pelvic exam and noted it was odd how pressure on my inner back where my nerves are caused more urgency sensation. He thought the vesicare was not being broken down properly by my liver interacting with the other meds I take, so I then tried a topical gel for it and gave me a strict diet. The med also didn't work, but i didnt really try the diet...no cheese, no nuts, no beans, no lentils...The only thing I thought helped at all was macrobid, however i had been on months of macrobid and it was starting to fail me also. I went back to urogynecologist for my follow up and wanted him to remove my iud. Instead he did the potassium sensitivity test and I was screaming in pain after only 5ml. He came back with the diet and 3 times a day of elmiron. The elmiron and strict diet really have helped. Im spending a fortune on all organic and hours in supermarkets reading labels, but I have had only a few flares each week when it used to be never ending. I only drink water, milk, vanilla milkshakes (usually daily), iced chamomile tea. I notice that the elmiron works better when I take it on an empty stomach way before eating or between eating. 
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I was diagnosed with IC in the Spring of 1992. I wanted to die. I went to the bathroom 60 times a day, at least, and 10 times a night. I was a school teacher, so you can imagine what I went through in those years. I refused to do the invasive treatments. They gave me my testing with no anesthesia, etc.....three different tests, and I came out like a drowned rat, soaked from head to toe with sweat from pain. That's when I knew I could not tolerate DMSO or any other kind of invasive treatment. I was on a wonderful IC website where tons of people were and everyone had lots of advice and things to try. I tried different things, There was a newsletter that I subscribed to every week (I can't believe I've forgotten the name of it! It's probably still going on) Many topics covered, and people wrote in with what they were doing that worked. That helped me more than anything. I took what I thought was the best advice and tried. it. I did spend years in pain and the worst was riding in a car, hanging onto the door handle for dear life praying to get to a bathroom fast. Sometimes we were stopping every 10 minutes. Okay, the good part is this......I am much, much better. I don't even think about it now. I eat whatever I want (and I can tell you, I spent all that time getting so depressed over trying to follow the IC diet.....I did it for a short time and couldn't stand it, so I used common sense.....no citrus, no coffee, nothing obviously acidic, and I drank huge amounts of purified water.....the irony of this is that it diluted the urine and I ended up having to go less because of it. Then I also decided to go the natural route to help myself. I stay away from dyes, preservatives (as much as I can), etc. Back in the day, I put together my own "cocktail" of herbs and oils from reading other peoples advice. I used olive leaf extract, a kind with 12 or 18 percent oleiuropein (active ingredient), one in the a.m., one in the p.m. I took marshmallow root capsules, 1 in a.m. 1 in p.m., I took flax seed oil capsules - one in a.m and p.m. Evening primrose oil - one in a.m. and p.m. Cod liver oil....same deal (the oils are very soothing to the lining of the bladder and urethra). I feel like I'm missing something, but it's been so long.....anyway, I was faithful to this regimen for two years.....I began to get relief within a week, but it took two years before I really felt so much better. I am no clear of IC. I can tell I have a touch of it, but it doesn't bother me. I am up once at night for the bathroom (I'm 63, so that is normal). I go during the day every 2-3 hours....no big deal. If I think of anything else I've forgotten, I'll post here. But you CAN get better! By all means, read Catherine Simone's three books on her bout with IC. She is cured. They are a little scary at first, but she takes you through and you see what all she did to get herself better. I am appalled at all they put you through.....no wonder your bladder is still so bad! Have they never heard of "first do no harm"? Be careful, folllow your heart and your instincts, and research, research. Any doctor that wants to immediately throw you into some heavy duty treatment but really doesn't know any alternatives to give you.....run from them and find someone else. I truly wish you the very best of luck and hope something here can help you! Oh....one more thing.....my daughter has IC now, too.....she used Atarax (an antihistamine) and it helps her to sleep at night and does her good.....also, slippery elm tea can sooth you, and marshmallow root can be gotten in a tea, too....just sip at it. She's not doing too badly, although she does get flares.
HUGS Beckeroo
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Please read my blog. You need to be tested for Ureaplasma. Please research it. Most doctors dont test for it, havnt even heard of it. Mine started with a UTI too. You need to look in your area and look for urologists and gynecologists that test for it. Its a controvercial issue rite now, as half the medical community believes in it being a reasonable cause for IC and half do not, as 70% of people have this bacteria in their bladder/genital tracts, but you get it from sex, your not born with it. Its a sexually transmitted disease, but not. But its been shown to cause urthritus, and it does not show up in normal cultures.
Its hard to detect, hard to treat, but its treated with several courses of strong antibiotics. Many urologist have seen 50% of their patients get remission from IC by treating that bacteria alone.
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Ureaplasma has been linked with all kinds of problems for women including infertility, chronic vaginal infections, and miscarriages aswell as IC.
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I hope you have garnered some relief from your pain. What has worked to relieve my paid was recommended to me by my private care physician...Take the following and out in a large soup pot of water, bring to a boil...1 bunch of parsley, 1 bunch of celery. When the celery is fork tender, pull the veges out of the pot. I instantly drink one hot cup of the brew...when it cools I put the rest in the frig in a tea pitcher. Drink 1 cup in the morning and one cup at night (hot or cold). My non-stop pain went away in 24 hours! It worked for me. Another thing, I was speaking to a physician friend of mine on the 4th and he asked me if my ic was viral or bacterial? I have no idea....but I am going to check into what roselay below is talking about, I think it has something to do with that. Best wishes. Kelly
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