Long story, and I can't believe it myself.
I'm 54 , went to the doctor every 6 months. Kept records and a diary.
Back in November 2017 went for my checkup. Told the doctor I had a tenderness sometimes below my belly button. He gave me an Antibiotic to take and told me it's probably a bladder infection.
May 2017, same thing, gave me an Antibiotic.
November 2018, same thing, gave me an Antibiotic.
It came and went, never big pain or anything, just felt a little tender once in a while.
November 2018 ..........
After taking the Antibiotic, a week later I was getting ringing ears, and light headed. Went to the doctor, he sent me to an ENT. ENT sent me for Vesitbular Theropy. She told me I don't have Vertigo, I have a medical condition causing the problem. Dec. 3rd I had a "seizure" and felt like I was dying. Went to the ER, they did an Echo test, blood work, everything excpet a mid section CT Scan. Everything came back good.
December 2018 ........
Mid december went to the hospital again for 3 days. Had another seizure went to a Different hospital. They did a Nuclear Stress Test and found nothing wrong. Told me to see a Nurologist. Blood work, urine test, all came back perfect.
New Years eve back in the ER with an attack. 4 days in, they did nothing. Laid there. I found out I had POTS right before I went because Pulse was shooting up to 140 when I checked it at home. After all this time, I stood up at home, and found out I had POTS. All the trips to the ER, and stays in hospital, nobody ever checked my stats standing up ! I did at home and found it. The 4 days I was in, right before my PCP and Cardio doc let me out I told them I stopped using the bathroom number 2. They just left and didn't say a word. My PCP did tell me to not move around to much in the room because when my pulse goes to 120 it sets off the alarm and the nurses get upset.
About January 6th I found a new PCP. Told him about the bathroom issue. He sends me for a mid section CT scan and a blood and urine test. I did it in the ER. They "cleaned me out" and I had yellow diarhia. All yellow. The ER doc comes back in and tells me "see a urologist ASAP and a GI doctor right away". He said I have a Cyst thats pretty big on my bladder on the top outside front. The ER did blood and urine work and mine were always perfect. This time, in 1 week, my Protein in my urine went from trace to 5.
I went to the urologist and GI doctor. Urologist had me get clearance for Surgery from the Cardio doctor because of my POTS. Urologist said "it's a har mass on my bladder, not a cyst". I go to the Cardio doctor, get the ok. Went to the GI doctor, he said I have blood in my stool and sends me for a Colonoscopy. He sends me for blood and urine work, now my Protein in my urine is 10. 7 days, from 5 to 10.
A few days later I called the GI doc cause Im still not using the bathroom. He sends me to the ER. I go, they took urine and blood, and basically told me they can't do anything. The ER doc wanted me to get a CT scan. I told her I just had one last week. She said she would go look at the Scan and tests and come back. While I'm waiting, I asked the nurse about my urine test. She say's my Protein is now 20. That's the star of Kidney failure. I know that, she didnt have to tell me.
ER doctor comes back in and asks me right away .. "who is your oncologist". I told her I don't have one. She said to see my PCP right away. She checked my rear end and a few things and said "it didn't spread to your spine so that's good news". Heck, I knew right away when the last ER doc said about my bladder it wasnt good.
I go back to the Urologist with the ok for a biopsy. A Cystoctopy. He dont want to do it with me awake with POTS, and I dont want to be awake, so I'm going on Feb.24th to get knocked out to get it done. He said it's a growth on the inside, didn't say how big and I forgot to ask, and a cyst on the outside. The cyst is easy to fix. If it's not cancer i the bladder.
I go get the Colonoscopy, he removed 3 polyps, sent them in for testing, and told me my "Apendix is Enlarged" and he didn't find any blockage or reason Im not using the bathroom. He told me to call his office, see him in 4 to 6 weeks, and he will set it up to do a scope from my throat to see what's going on.
Now remember, I haven't used the bathroom since January 2nd. I eat a little, take a Laxative to go a few hours later. Then it's diarhia, and not much. Sometimes brown, sometimes green. Everyday since January 2nd, and see him in 4 to 6 weeks and I'm not using the bathroom ? 4 to 6 weeks then schedule a test ?
Last 3 days, since Jan 14th I'm getting more light headed, can't eat cause I get blown up fast, Laxative ain't working anymore, and I'm trying to explain to family and people It's the bladder and probably cancer causing all of this. Since 2017 until now with my bladder. The Urologist even said "it's been there on my bladder for quite a while".
So, here is where I'm at so far ........
Since November, I lost 65 lbs., havent had a bowel movement really since Jan. 2nd, Pee is not much and very cloudy dark yellow 80% of the time, Protein went from 0 to 20 in 3 weeks because Kidney's ain't working right, I have to have a scope to see if he can figure out my Intestines are failing which I already know, my Apedix has to come out now, I can't eat or drink much because I get blown up and will end up in the ER, and all my doctors still do not agree the bladder has anything to do with all these other problems. Why ? Because it's about the money. By the time next week comes for the Cystoscopy, then a week to get the results, it will be to late. Look all that happened in 3 months. Then maybe 6 weeks to do a scope and that won't show my Intestine is failing.
Freinds and Family's thoughts on this....
A lot of help. They are busy, work, and live far away. I have POTS and can't drive anymore. I can't walk 50 feet before I want to fall, I get a ride from my 78 year old neighbor about 20 times now. He is old and can't keep doing it. I'm not rich and can't afford to pay UBER or someone $50 a ride to go to the doctors and maybe eventually all these surgerys, and Chemo if it comes up. All the medical bills I paid and I'm broke. And still ..... nobody will conclude its my bladder. My brother tells me "oh that's good they found the Appendix problem, they can remove that".... Thing is I never had any problem with my Appendix ! So ..... like I told them all, if I have late stage bladder cancer that caused all of this and my body is shutting down, does it make sense to remove my Appendix, get Kidney Diolosis possibly, then get a bypass to use an Ostomoy bag ? And what's their answer ? "Get the Cystocotpy done 1st stop worrying, the bladder has nothing to do with any other issues your having"..... LOL ! I guess it's just a coincidence that my Kidneys are failing, my Appensidx is enlarged, Intestine stopped working, I can't Pee much and blow up and it's very dark cloudy yellow, I'm getting weaker, and there is something in my bladder growing for over a year.... They tell me "quit playing docotr and stay off the internet, one of it's true".. Lol ! I'm no doctor, but I think a 10 year old kid could figure this one out. The doctors don't want to. They want to make as much money as possible before they tell you "we found the problem and it's to late".
Like I told everyone, I'm very affraid about what's t come, BUT .... I will still have POTS all my life no matter what. If I get my bladder removed, all the surgerys, bypasses, Chemo, sell my house to pay for all of it, then what ? I can live a longer life just being able to walk maybe 50 feet at a time, not being able to go to the store, drive, go on vacation, depend on my nephew across the street to bring me some soup and things from the store, and go from the bed to the sofa like I been doing for 3 months. And my "getting out" is to go to a doctor IF I can get a ride and walk in the door without falling down.
Family tells me to go to the University of Chicago or Northwetern University. 25 miles away. Like I can drive, or walk in the buildings. They can't take me, I can barley walk to a car let alone sit in one for an hour. I been through this for 3 months with 20 different doctors. Call and tell them it's an emergency, I havent had a bowel movement in 4 weeks, and they tell you "I can get you in sometime in April".... Every doctor, new or not.
I live alone, have about 3 people still around that call me and come around maybe twice a week to check on me. Next week I go for the Cystoscopy, then it will be a week or so to get the results, ( which aint hard to figure out since my body is shutting down), then in 4 weeks to schedule a scope for the bowels. and I have people tell me to go to different doctors. Start all over again from square 1 ? I hear "hang in there, don't give up"........ I wish I can tell my body that and it would listen but they don't understand how fast all this happenend, and how fast things are progressing. It's not up to me. When it's my time to go, I have no control over it.
I called places for a Nursing home, or probably even Hospice care in the near future, I can't afford it because I'm no on Medicare or Medicaid, and they wont take me because I have to many problems. I have to have documents from the doctors anyway to be in a place like that, and if it takes 3 or 4 more weeks to get that done, time is not on my side wih all that has happened. January 4th I had POTS, blood, urine, everything was still perfect, 5 weeks later now....... time is not with me.
I find out I have POTS, the next week they find my bladder problem, go to get that looked into, they find a new problem with my kidneys, go to get that looked into, they find a problem with blood in my stool, get that looked into, he finds my Appendix is enlarged.. Every week, something new, and NOW they will do a test and see if it's the bladder causing the problem. AFTER it damaged everything else. 3 weeks ago the Urologist said "we have time, if its cancer it didnt spread cause my blood and urine are coming back good". 2 weeks ago ER doc looks at results and asks "whos my oncologist" and checks my spine to see if it got in my spine.........
all of this because back in November of 2017 when I had something going on with my bladder, the doctor failed to do a urine test, or send me for a scan.......... Gave me antibiotics
Thank you for letting me vent...........