Corrie
Board Addict
Reged: 07/16/02
Posts: 362
Loc: Southeast US
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I'm writing this because I've been reading quite a few posts that say that people are having pain, either back, neck, etc. and need to get the medication to treat it. I think it's important to get that medication, but I also think it's EXTREMELY important to get those tests run to ensure that there is not something more serious going on.
I went to my doctor because of pelvic pain (I've already been diagnosed with herniated disks 2 years ago) and a bladder infection, and have had the gamut of tests run which I won't go into to just be told that I have Interstitial Cystitis. I was told this may be the diagnosis before the major tests were taken, but you need to have a physician perform a cystoscopy with hydrodistention under general anesthesia to truly be diagnosed. So you have to distend the bladder (sorry for the graphics).
I was treating this condition (bladder infections that I thought they were) with the standard Antibiotics (Cipro) and given other medications such as DMSO, Cystistat (hyaluronic acid) and pain killers from the doctor, but had I not gone in for tests, I would not have found out the reason for the pain. I was even told by a doctor that I had nothing wrong with me so I'm glad I went in for a second opinion. It sucks having herniated disks AND IC, but it could be worse I know. And I know others on this board suffer from more painful conditions.
My point here is that I was self-medicating, which is fine when you know what your condition is and your doctor will not help you with pain management, but in the case that you don't know for certain what you may or may not have, I think it's SO important to get those tests run to rule out anything more serious. At one point, I was told I could have had bladder cancer (was displaying all of the signs).
I'm definitely not trying to butt in and give people unwarranted advice as to how to treat their conditions, I just care a lot about people here and want to make sure that when we have doctor's underprescribing for pain, we just know what that pain is for exactly. I kind of learned the hard way when I ended up bleeding and it somewhat freaked me out to say the least. 
Anyway, I wish everyone good health and painfree (or at least on a 2 on a scale from 1 to 10) days. 
Corrie
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Fiver
Member
Reged: 10/02/03
Posts: 104
Loc: Michigan
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I.C. is one of the harder diseases to diagnose and often goes undiagnosed and thus untreated for years. I've read that it's something you really don't want to have...you know, if you're given a choice in the matter...
Anyway, my thoughts are with you. Be well, take care, and take your medicine. 
-Fiver
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IMSUSCOT1
Threadhead
Reged: 10/23/02
Posts: 874
Loc: usa
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corrie--you make an excellent point! Vague symptoms, particularly abdominal pain, headaches, can point to something seriously wrong...like pancreatic cancer, which will kill you in short order even WITH treatment...so one should ONLY be utilizing OP's & IOP's when they've been diagnosed, know exactly what is wrong & have been prescribed the med their ordering before by a physician....I currently work for a P.E.T. imaging center and no ya'll...we don't take pictures of animals(before someone makes the joke!) and so many forms of cancer are quite treatable if diagnosed EARLY....it's such a mistake to ignore the reason behind pain...it can kill you 
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greeneyes100
Stranger
Reged: 07/16/03
Posts: 22
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What is the treatment for this condition? My brother (and even my young niece) keep getting bladder and kidney infections (for years now) and the doctor does not know the cause. They keep putting my niece in the hospital for IV antibiotics and have had her take antibiotics for years now on a regular basis and she still gets the kidney infections. They can not change doctors because they are HMO. I wonder if this is a genetic condition. My brother has severe pelvic pain but the doctors tell him its arthitis. This doesn't explain the frequent bladder infections that he gets. His feet were crushed in a car accident and all his problems started after that. (arthitis through his whole body).
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IMSUSCOT1
Threadhead
Reged: 10/23/02
Posts: 874
Loc: usa
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The HMO has specialists...and the PCP is required to refer patient's to specialists when the level of care they need exceeds that which the PCP can provide. I would make an appt with the PCP, come armed with a detailed list of the frequency of kidney/bladder infections (include as many specific details as you can provide..i.e. dates, what was prescribed, etc) after a course of antibiotics is the PCP doing another UA and C & S to make sure the infection has cleared? If the PCP refuses to refer to a nephrologist or at least an Internal Medicine doc, I would call the insurance carrier and insist a referral be made....Having repeated infections can cause scar tissue to develop which impedes the flow of urine, can cause reflux which starts the infection all over again...sepsis(a life threatening infection of the bloodstream) is a huge risk with bladder/kidney infection...so you have to get tough with the doc & if it doesn't work, insist the insurance carrier get you to the correct doc to figure out what the problem is if the doc refuses, file a complaint with your states board of medical examiners (listed in the blue section of your local telephone directory under state government) and tell the insurance carrier you will file a complaint with the State BOard of Insurance.....that WILL get you results good luck & be firm!
Edited by IMSUSCOT1 (11/06/03 06:31 AM)
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night_shade
Threadhead
Reged: 08/26/03
Posts: 907
Loc: The State of Hockey
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Bladder and kidney pain can be excruciating. I feel for anyone who suffers from these problems. For a decade I suffered recurrent bladder and kidney infections--I even got septic from one particularly bad case of polynephritis. As it is one of the preferred items to "fake" by drug seekers, I have found doctors to be reluctant to go beyond the standard diagnoses (i.e. UTI) and push for better testing. I've had all the tests you mentioned, Corrie, and probably the ones you didn't. It took ten years to get a diagnosis and effective treatment.
Low-dose prophylactic antibiotic treatment simply didn't cut it. Medications to reduce the calcium in my blood didn't stop stones from forming. I thank god for drugs like Pyridium, which have been LIFESAVERS! No narcotic pain medication can free a person from that godawful burning and urgency associated with these problems like Pyridium (AZO Standard, OTC has same medication) does.
Now, I have been relatively free from these problems the past two years. What's changed? I haven't been having sex with a particular man in that time. My problems with urinary tract issues begun when I met my ex-husband and recurred throughout my marriage. I followed all the rules of UTI "prevention" and ladies, you know what these are regarding sex. There is research out there regarding the "chemical reactions" (for lack of a better term) between two particular people produced during sex that causes or exacerbates UTI problems.
Obviously this isn't everybody's problem, but it's worth doing further research.
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Never underestimate the predictability of stupidity.
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Corrie
Board Addict
Reged: 07/16/02
Posts: 362
Loc: Southeast US
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Thanks for all of the replies.
Greeneyes, you received great responses. I started with kidney/bladder problems when I was 13 years old. They were recurrent and extremely painful, and proceeded over a time period of a year. My Mother went to bat for me CONSTANTLY to try to get treatment, to which they finally stretched my urethra (put me under general anesthesia). This seemed to help for several years, but the bladder infections kept on returning at a rate of several per year. After I had my first child, I was in the ER 3 times with bleeding UTI's, put on antibiotics, given pain killers, and that seemed to help.
Just recently (over the past year and a half), I've been having SEVERE pain, UTI symptoms, etc., and was referred by my PCP to a Urologist. They took the above mentioned tests and even wanted to put me on Elmiron, but I'm researching that one right now. Some of the side effects I'm concerned with. I'm taking several meds right now, one Urelle and that helps more than the actual opoids. There are a variety of meds to take to help, and I could go into specifics, but you've been given good information by the others here.
Here is a link that describes the condition as well - web page
Corrie
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