Discussions By Condition: I cannot get a diagnosis.

Please help me - I have a medical mystery that doctors don't understand

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: healingme
  • February 25, 2007
  • 10:57 PM

If needed, I will repost this in 1 or 2 other relevant forums.

I haven't had an "official diagnosis" from a medical doctor so I name it "overactive bladder" because that's the way it feels and I describe it that way. I've been tested for a uti 5 times and all tests came back negative. No infection is present and the only pain is when I have the frequent urges to "pee", in the bladder itself. I've been married for 14 years and have no children so there's no problem anywhere else. There's hesitation after the "1st flow" of urine and I go through ***l at #4 and #5 "turn" to pee. There's always a flow, it's not a false alarm or anything and it's driving me nuts!!! *crying* My husband and I have had occasional intimacy, but it hurts so much on contact that we're intimate up to a point and then I have to stop. We're intimate every month or every other month, it's awful! I just don't know what to else to do and since I don't have the funds to see a holistic physician and I"m not working so I don't have health insurance, I'm falling thru the cracks as an indigent and I'm being treated like a criminal or immigrant. It seems to me that a wise knowledgeable person with nutritional and health knowledge and knowledge of the health workings of the human body would be able to determine what's wrong and diagnose this problem. I also need to treat it, but I need to be careful because while the cranberry is beneficial and helps the bladder, it irritates it and causes more discomfort. I took uva ursi but I won't again because that's for an infection and I don't have an infection so it's unnecessary added irritation discomfort.

I"m a healthy 100% vegan eater, I don't drink any coffee, no soda, zero caffeine, not 1 drop, I don't smoke, I don't do drugs or take any pharmaceutical medications, I use 100% completely organic plant-essence earth-friendly hygiene cleaning products, and I use only 100% strictly non-toxic gentle earth-friendly laundry products, no detergent. I don't eat any junk food or unhealthy processed junk, no refined sugar. I only drink clean well water and juice. Sorry for this long post, but I wanted to give you a clear picture so you might be able to help me. Can someone please help? I"m feeling very frustrated and I don't know who to talk to. I don't feel my life is in serious jeopardy or that this ailment is seriously detrimental, but it would ease my mind to rule out anything detrimental and know that it's benign and simply needs to be healed and treated in a gentle manner. I"m sure all the stress in my life isn't helping - air pollution, noise pollution, struggling indigent, asthma, having to live in a 28- by 6-foot RV camper, isn't helping at all. If I left anything out and anyone needs more information, please don't hesitate to talk to me and ask me. Sorry for the long post.

Part II OAB - The Healthcare I've Sought

Although my symptoms really didn't match at all, it was suspected I had a uti...so I went to a low-cost family medical clinic and I was tested - the result was negative. I went to another clinic and the same result - negative. The 2nd nurse N.P. who tested my urine also did a kidney test to ensure my kidneys weren't in danger. She told me my kidneys are fine and healthy and I have nothing to worry about. She told me that if I indeed had a serious problem with my kidneys I'd be in unbearable pain in my kidneys, which I am not. I've also had ob/gyn pelvic exams and both came back healthy and negative - no problems, infections, or dangers present. I went to the emergency room here because that's the only place where an indigent person can go for healthcare where they can NOT refuse you or turn you away. The only problem is having to wait in the waiting room for 8+ hours due to the priority of emergencies and health crises. Again, my urine was tested and the result was negative. When I told them I just couldn't stop peeing and I feel thirsty a lot and then my bladder just keeps filling up even right after I pee, ugh...they tested me for diabetes to ensure my blood sugar is healthy. Again, test result was fine and negative.

As you might imagine, at this point, I was ready to pull my hair out of my head and slap all the stupid doctors. Then, I was told about a free health clinic where you simply have to stand outside and wait for an hour or 2 before they let you in and you can get seen, examined, and hopefully helped. This is the abridged version. I was seen and examined and had my urine tested again, they insisted as part of the "free medical exam procedure" and to just "be sure" and again, test result was negative. They then gave me a referral to a free clinic. This part of the story ends here because I didn't get any further with the medical help.

I'd like to respond to some of the replies to my original post. I do not suffer from any incontinence and after reading some info online and help from my husband, I am familiar with the Kegel exercises and I've done them many times. My pc muscle is still very strong and it functions properly. The 1st nurse N.P. I was examined by at the low-cost family clinic was checking me for IC Interstitial Cystitis because she didn't know what else to tell me. My "condition" is a medical mystery and no one understands what I'm going through, perhaps partly because my life is so unusual that they can't relate or understand. She was only tentative on the IC and when she did a pelvic exam she couldn't find anything wrong inside. A doctor at the free clinic told me that people are often diagnosed or misdiagnosed with IC because the condition is so mysterious and strange they don't know what else to call it so they give it that tentative name with the hope of finding a more correct diagnosis. I'm sorry everyone for saying so much, but I'm trying to give you a clear understanding of the process up until now, I hope everyone understands.

Thanks for listening and I hope someone can help.

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14 Replies:

  • Jeez, sounds bad. You are way healthy lifestyle and do not have UTI. Maybe tons of water, see if you can flush something out of there?Allergies? Something in your living space? Wish I could help.Pete
    Anonymous 42789 Replies
    • February 26, 2007
    • 00:02 AM
    • 0
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  • I'm not a doctor, but it sounds like something is irritated in your urinary tract. Maybe if there's a scratch or something that your urine is irritating, it could cause swelling that might make it difficult to pee. I don't know what kinds of tests a doctor would do to determine this, or where you could get them done, but if the pain is more external, maybe there's a contact allergy? I know that polyester undies can cause yeast infections (or at least make them worse), maybe switching to 100% cotton might help? How long have you had these symptoms?
    Anonymous 42789 Replies
    • February 26, 2007
    • 03:20 AM
    • 0
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  • You said you get very thirsty...how much do you drink? Are you drinking gallons a day? Do you feel very strange or even sick if you don't drink water constantly?
    deadlysauce 67 Replies
    • February 26, 2007
    • 04:14 PM
    • 0
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  • I know you said you have had tests for diabetes but have they tested for the rare type diabetes insipidus? It is not related to the type 1 and 2 people with DI are thirsty all the time and urinate often.
    Anonymous 42789 Replies
    • February 26, 2007
    • 05:08 PM
    • 0
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  • Sounds like you may have IC/Painful bladder syndrome. Effects one million Americans (90% are female). The best way to diagnose and treat this condition is cystoscopy with distention (performed by a Urologist who is knowledgable AND caring). Alternatives include instillation of DMSO into the bladder every 2 weeks X four treatments. There is no cure (one of the worst mistakes I have seen made is to do surgery). Currently there is no nutritional treatment although some foods, spices, caffiene, sodas, and dyes make the pain worse. Good luck
    Anonymous 42789 Replies
    • February 26, 2007
    • 05:19 PM
    • 0
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  • An IVP would help determine if you have a kidney stone somewhere along the tract that cant get out. That's what my interstitial cystitis turned out to be and thats how it was diagnosed.
    Anonymous 42789 Replies
    • February 26, 2007
    • 06:14 PM
    • 0
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  • I had very similar symptoms for almost two years and it was maddening. I went to three urologists and none of them found anything until I insisted on doing a cystoscopy (looking inside the bladder). They found something on my bladder called a urachal remnant, which is something we're born with but usually closes up after birth. Mine didn't and the doctor removed it because if left on the bladder it can turn into a tumor. As a matter of fact, the diagnosis on paper did say a benign bladder tumor. I went in and they put me under but I went home the same day. My bladder is still sensitive at times (especially when I don't pee as often as I should), but the feeling of having a bladder infection (when no infection was present) subsided. No one knows the misery of that feeling until they've lived through it. I hope this helps.
    Anonymous 42789 Replies Flag this Response
  • I agree With Midge,a friend keep peeing day and 4 time through the night they gave her this nasal spray, stopped waking at night to pee,they did a CT scan on the piturtary gland show she had diabetes or alot of little tumors(which doc said not cancer)sending her to a specialist and for a MRI.I did not know that waking to pee through the night was not normal till she got sick,all of her blood work came back normal, hopes this help, as i am not a doctor,if you have any question, i can find out from her. good luck.
    Anonymous 42789 Replies Flag this Response
  • Very important - begin by NEVER mixing fruit and yeast (bread). Easiest is to stop eating bread completely. Also no wine. Please try it for a while.
    Anonymous 42789 Replies Flag this Response
  • Interstitial cystitis is a REAL diagnosis, and a REAL condition.Ugh. Have had it since 1998. No fun. Everything else possible ruled out, and had it ruled in via cytoscopy and hydro (classic glomulerations, bleeding, etc.)Also, OAB can be caused by spinal/neurological problems. You really need to be worked up via urodynamics.I made the mistake of having a bladder tuck, despite being told it might aggravate the IC, and boy did it. It has been a year since, and I am still in a major flare. best of luck.
    Anonymous 42789 Replies Flag this Response
  • I have IC too, and i think you should look into that. i am 20 yrs old and had all of that for about 2 years before I was diagnosed 4 years ago. check out this forum, as it is an IC forum nd you can read about what patients go through. Also, ask some questions, and you definatly get answers. http://www.ic-network.com/forum/index.php
    anne.katherine 10 Replies Flag this Response
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  • hey there, i am a medical student and so obviously have very little expierience in diagnosis, but u mentioned that ur diet consists of only vegan friendly products and water, and u also mentioned that its painful to make love which is not characteristic of bladder irritation for obvious reasons, although can sometimes be affected. on this basis, although many adverts continuously tell you to eat more fruit and veg i would reccomend a more varied diet, especially one with more protiens and unsaturated fats in it, this may help to strengthen the urinary tracts and the muscles around the vagina (if that is another affected area as suggested by your post) and perhaps try and drink bottled water another source such as mountain springs there may be somthing in the water that u dont know ur drinking
    Anonymous 42789 Replies
    • January 25, 2010
    • 01:10 AM
    • 0
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  • 1st and foremost, do NOT drink lots of water.......if there is ANY type of bacteria, water is alkaline and will do nothing. Do, however, try and drink cranberry/grape/orange juice....any juice with lotsa vitamin C in it......OR take 2 1000 mg vitamin C tablets a day for a few weeks to increase the acidity of your unrine, just to see.........it wont hurt you......however, DO NOT STOP SEEKING MEDICAL ADVICE. You need to go to an OB-GYN to see if its Gyno related......especially if GU doctors haven't been successful in diagnosing.To me, as a nurse, Im thinking its GYNO related. Just an opinion, though.
    Anonymous 42789 Replies
    • January 25, 2010
    • 10:01 PM
    • 0
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  • Vegan diet, no bad things - but Northern European ancestry (white)?Do you have trouble sleeping, and also tired all the time?Do you find your hair falling out?If no to all of the above then don't read on.If yes could simply be that you've finally run out of a vital nutrient - a vitamin (vitamins are vital to life - it's in the name - and some affect lots of systems which means you get lots of non-specific symptoms which need to be seen as a cluster).Have a look at my web site www.b12d.org especially the Signs and Symptoms Assessment Form and see what you score. The things about B12 are: it's very safe (there's no upper dose limit), it's very cheap (you can buy lozenges on the internet and injections at a pharmacy in USA - check out B12 on YouTube!!), and it's used on animals all the time (to get greyhounds and race horses to run faster, so beef cattle grow faster, etc).Many of the diseases that we find respond to B12 replacement therapy (dementia, multiple sclerosis, neuropathic pain, neuropsychiatric disorders, numbness, even some cancers, pernicious anaemia of course, gynae problems (see the video on b12d.org - that lady is pregnant at the moment), bowel problems (including Crohns), fatigue, anaemia where the iron appears normal) are pretty much incurable with loads of expensive medicine when all that's needed is enough supplement to make your diet right again. No I won't tell you where to buy it - we don't make a profit on selling the stuff
    Anonymous 42789 Replies Flag this Response
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