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Very Scared Needing Prayers


Guest Mary from OH
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Guest Mary from OH

I have been putting this off for awhile and not sure whether to post or not. It's just that I consider many of you my "extended family". I've been having more than my share of medical problems. (what else is new? LOL) And I'm in need of prayers.

My migraines have been out of control and causing major neurological problems. However, I also have another problem that I have bee dealing with. I have been bleeding on/off for the last 6

months or so. It in in my urinary tract somewhere. I just had another episode where I actually bled for a long time - a little over a week. They are trying to figure out where the bleeding is coming from. The Urologist suspects possibly from a tumor or the big "C". Supposedly, I don't have any of the risk factors for the big "C", but all my symptoms are driving him in that direction. I'm really scared. I have a CT on Tuesday and a cystoscopy and meet with him again on Friday. I had posted a while ago about my urinary symptoms and bleeding. Somehow I also think it may be related to my POTS. I don't have any infection. I keep running a fever on/off (what else is new) and I've been SOOOOOO tired. Plus, I have had a loss of appetite. I'm really worried and it's taking them SO long to do all the tests! It's funny because they say they are doing them STAT because they are so concerned. They had everyone in the office running around while I was there. It was a little embarassing because the WHOLE office knew my history and everything. "Oh, you're Mary __"

Thanks for listening.

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If it's any comfort Mary, I've had blood in my urine for over 20 years and they never can figure out where it's coming from. I have had bouts of interstitial cystitis, but times when it hasn't shown up and there is still blood in my urine.

I think the doctor is a little premature, maybe saying it could be a possibility, but you don't know till tests are done. You will be in my thoughts and keep us posted...chloe

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From my own experience and from what I have read about dysautonomia and POTS, blood in the urine is not a symptom associated with POTS.

You don' t say if you have just a little blood in the urine or a lot. I once had what they call gross hematuria (so much blood the urine looks like blood) on two occasions which stopped both times on its own. I had kidney x-rays, as they thought it was possibly that I had passed a stone, or that I had cancer, but that was not the case. That was several years ago and it still remains unexplained.

If you are talking about a small amount of ocult blood, I have had that for many years, too. In my case they are not worried about it, most likely because I had everything checked out.

You are doing the right thing by having the tests to look for the cause. Then you can go from there. In the meantime, try not to worry, as any particular symptoms can have many different causes.

Yes, I will pray for you. Let us know the results of your tests.

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Hi Mary, it seems like overload for you, but I am praying for you and know that God has it all under control. Sounds like there are many reasons for it, I have also had bleeds, from an inflamed bladder they thought. Please let us know how you go. God bless.

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Guest Mary from OH

I have GROSS hematuria to the point that I am filling the toilet with blood every time I go. I am passing large clots. Whenever I have had the bleeding intermittently, it is the same. I fill the toilet with blood. I am feeling lightheaded from all of the blood loss. It is a lot more than when you have a period. I have had to wear a pad during this last episode, although most of the bleeding occurs when I actually go to the bathroom.

I go to the bathroom at least 8 - 10 times a day. I am also going several times during the night. I also have difficulty beginning to go to the bathroom (voiding) to the point that it takes me 15 to 20 minutes to be able to go. (this symptom, along with the hematuria, except for this last time) comes and goes). I don't know if I have occult blood in my urine that I can't see at other times, I've never gone and checked.

I don't have interstitial cystitis or a bladder infection as was originally suspected. There is no infection. It is possible that I may have kidney stones or something along those lines. I take Topamax for my migraines and it can cause kidney stones. Also, as I said, I was already to the Urologist last week and he performed some cursory tests then. And from taking my history and symptoms, my dr was able to come up with a tentative diagnostic plan and schema. I have to trust from his experience that he is on the right tract. Right now, he has a three-pronged attack and after those tests we will re-evaluate. That sounds reasonable to me.

Thanks to those of you for the prayers! I will need them!

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mary -

you will definitely be in my thoughts & prayers. while i haven't been in your exact shoes i have experienced the fear of large amounts of visible bleeding (aka the toilet being full of blood) when i didn't know the why yet (ended up being ulcerative colitis) and know how scary it can be. i'm glad that the docs are on the ball though with figuring out what's going on and hope that you'll have some answers soon.

hang in there,

B) melissa

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Mary,

I know you are terrified and I truly hope you get an answer soon. There was a period when the doctors thought I had colon and/or bladder cancer due to suspicious bleeding. My diagnosis ended up being endometriosis. I had endometrial implants on my ovaries, in my rectum, and on my bladder- hence, all the strange bleeding. It was a terrifying experience because it took so long to figure out what was going on. Good luck to you and please let us know what you find out.

Carmen

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Mary, goodluck this week you are in my thoughts. :)

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Mary,

Oh my....you have so much on your plate...I keep hoping you will get a break from all of this! Yikes!

I would be very scared too...it's hard not to give in to fear even though we all work so very hard not to!

I have not experience with anything like this...so don't have any ideas like others had...

but wanted to chime in with my support and HUGS your way!!!! (and to Marissa too)...

Please keep us posted...

Emily

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Guest Julia59

Mary---i'm so sorry for the late reply.

I can see why your feel worried and and have concerns that it may be something more serious. You will be in my prayers for this to pass---and that it is nothing serious.

My mother was also dropping clots---and bleeding. They never did find the cause, but anything serious was ruled out. She went to a urologist and had a full workup---the only thing they found was that one kidney was sitting up higher then the other---it was nothing.

Anyway-------hang in there---and i'll be thinking good thoughts for you tomorrow.

Julie :0)

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Guest Mary from OH

Thanks again everyone!! Well, I made it through my CT scans. It really wasn't much of a "big deal" since I can't have the dye since I have an anaphylactic allergy to the dye.

Well. Now I'm in worry mode. Since I can't have the IVP dye for the CT scan and they cant do a KUB scan (I think it's called) because they use radioactive iodine, now I'm freaking out that they won't find out what's wrong with me. (and everyone's stories here didn't help me). It's kind of like POTS and other things in my life I've gone through. I've got all these symptoms and abnormal tests, but they can't figure out what's wrong OR help me!!

This time, that has me even more concerned than usual (eventually I just get frustrated, give up, and learn to live with "whatever"). I CAN'T live with filling the toilet with blood every time I urinate for up to 8 days at a time. That CAN'T be good! I'm trying not to get ahead of myself, but also preparing for Friday. From personal experience, this kind of this has happened to me many times... I'd like to be prepared WHAT to say to the Urologist! I don't know. I guess I'm overwhelmed and to many of you it probably looks like I'm overthinking things, but I've been down the neverending road of tests with no answers before.

I guess I just need to wait until Friday and have questions for my dr ready. I just don't know what those questions might be...

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Mary, I think we all can be guilty of "overthinking" things in regards to our health- but as you well know you HAVE to be your own advocate. So, if you have concerns you deserve to have them addressed by your doctor. There are few things more stressfu than waiting for test results especially when your doctor has already shown he too, is worried. But.... one positive (if I can call it that) thing is that when it is bad news you usually find out quickly. So.... no news is USUALLY good news. Hope this will be the case for you and I do hope you get some answers. You will be in my thoughts.

Carmen

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Guest Mary from OH

Carmen,

That's probably true. So, I'll be waiting tomorrow!! They said he wouldn't get the result until then. Hmmm... I think I remember hearing his office say that he would be in surgery on Wed and Thurs. Maybe he won't even see it until Friday? Who knows? I'm not going to worry about it. He still has to do the other test anyways.

I have a killer migraine today anyways (got to LOVE these changing weather patterns!!). I'm going to go take some meds and lay down.

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Hi, I just wanted you to know that I've been thinking of you since you posted. I just haven't been able to reply until now. You're in my thoughts and prayers. I know you must be scared.

I also know that so much blood loss can make you very weak due to low iron. If you aren't already taking an iron supplement, you might want to ask your doctor if you should be. I also know how hard it can be to wait for tests and test results. I hope that this will be something that is easily treatable.

Take care,

Lisa

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