My very scary experience!

[tchr013]

I had my bladder distention and biopsies done 2/22 and went home and felt okay. The whole week I was a little bit sore but then Monday morning I started urinating blood and the pain was awful, we told my doctor all they did was call me in Pryidium which did not help. Tuesday I was bleeding and passing clots so bad I had to wear the think bladder control pads (I also have no female organs because I had a hyst 5 years ago). The pain got so bad that I wanted to pass out everytime I went to the bathroom and I stopped drinking and eating. Finally we convinced the Uro to see me and when I did a sample it was pure blood and I practically screamed even trying to go! After waiting over an hour for my appointment they made me do a catheter with irrigation which added more pain and they were getting out tons of blood and more clots but it was not stopping...finally I begged them to stop and they sent me to the hospital where I have been all week! I ended up having emergency surgery on Wednesday and they had to cauterize the biopsy areas because a clot and come off of an artery and I would never have stopped bleeding! Now I am still in a lot of pain but thankful they saved my life. I hate IC And the funny thing is I have had bladder distentions and biopsies done without any problems but yeah it was very scary because as I kept bleeding more and more I got sicker and sicker. My IC was being controlled through elmiron and diet pretty much but i ran out of my prescription before my spine surgery back in november and in this time period my IC has came back even worse and who knows if the distention did any good. I am in a lot of pain and the spasms and going to urinate makes me want to throw up at times I am really depressed right now because I might have to do catheter treatments again, which I really REALLY hate. I am not sure if I shared this in the right place but I am just looking for some support right now. I am also a 30 year old college student in the middle of planning my wedding! Thanks for listening!

[Linda May]

your uro should have sent you to the emergency room asap after exam only, he put you through pure unnessary torture.i would get another uro asap that is so cruel to put you through that you could of died. my heart gos out to you and i hope and pray that you get relief soon.

[cmclien]

Your experience sounds like a real horror story and I feel so badly for you! Glad you are ok now. Just wondering, if you already have been diagnosed with IC why the biopsies? Was the hysto to help with symptoms? I agree you might want to look for another uro. It doesn't sound like they took you very seriously, making you wait like that and then insisting on the irrigation when you were in so much pain. Seems like they should've found out whats wrong first. I'm just glad it all turned out ok

[ICNDonna]

to the IC Network.

I hope that once you have fully recovered from what sounds like an awful experience that the hydrodistention will make you feel better.


Donna

[kimberlee70]

Just wanted to let you know you're in my prayers. Sometimes, IC and all the
problems associated with it, can really bring a person down. It is so easy to
get frustrated, depressed and angry! Throw in a bad medical experience or two, and it can really shake your constitution. I agree with previous posts. Have you had other bad experiences with this URO; if so, if at all possible a new URO might be called for. It took me seeing 3 UROS & 1 OB/GYN before I
found the right "match". Fourth times a charm. The 3rd URO I saw Cath'd me
for no reason but to get a clean catch. By the next morning, I was in extreme pain with urination, had insane frequency (which I don't normally experience), and burning. I will avoid being Cath'd again. It really sounds like you have a lot going on in your life. The wedding may add a stress; but what a wonderful day to look forward to. Sometimes looking forward to something both short term (a sweet treat at the end of the day) and long term (vacation), helps me feel more in control of my life. It helps to shift my focus away from IC. Sending prayers, and a very gentle hug your way!

[tchr013]

your uro should have sent you to the emergency room asap after exam only, he put you through pure unnessary torture.i would get another uro asap that is so cruel to put you through that you could of died. my heart gos out to you and i hope and pray that you get relief soon.

Thank you for your thoughts and prayers. It was a very scary time for us as well as a very painful time for me! I was really mad because the doc (which was not my usual one) first tried to say that this happened because I had 2 xcedrins a week after my distention! I thought that was crazy and then she also said well we would have had to send you to hospital anyways because your bleeding would never have stopped! I was very angry and should have been taken straight to the hospital especially considering I was doing all of this with out pain or numb medicine!

[tchr013]

Your experience sounds like a real horror story and I feel so badly for you! Glad you are ok now. Just wondering, if you already have been diagnosed with IC why the biopsies? Was the hysto to help with symptoms? I agree you might want to look for another uro. It doesn't sound like they took you very seriously, making you wait like that and then insisting on the irrigation when you were in so much pain. Seems like they should've found out whats wrong first. I'm just glad it all turned out ok

Cindi, thank you for the reply. I had the hysterectomy in 2005 and it was for endometriosis and polyovarian syndrome I also miscarried so I knew I could not have had kids and went ahead and had it done. I am not sure why he did the biopsies because I have distentions before with my other doctors and did not have any problems, however, they don't usually help me or at least only help a little and I am back on cath's again. We are supposed to find out the biopsy results next week so it will be interesting to see what he says. They did the distention because I had been off my medicine for months and it had made things so bad I was back to wearing diapers, being in pain and having to get up all night to go to the bathroom. My doctor told me in order to make my elmiron work I would have to have the distention and ureter dilation, biopsys done first. I am still in a lot of pain and spasms when I go to the bathroom

[tchr013]

to the IC Network.

I hope that once you have fully recovered from what sounds like an awful experience that the hydrodistention will make you feel better.


Donna

Thank you for the welcome! I really hope that this distention has done something good but as of now I would have to say it did not help The doctor said to give it a couple weeks when he did it and that way we will know whether or not it made a difference.

[tchr013]

Just wanted to let you know you're in my prayers. Sometimes, IC and all the
problems associated with it, can really bring a person down. It is so easy to
get frustrated, depressed and angry! Throw in a bad medical experience or two, and it can really shake your constitution. I agree with previous posts. Have you had other bad experiences with this URO; if so, if at all possible a new URO might be called for. It took me seeing 3 UROS & 1 OB/GYN before I
found the right "match". Fourth times a charm. The 3rd URO I saw Cath'd me
for no reason but to get a clean catch. By the next morning, I was in extreme pain with urination, had insane frequency (which I don't normally experience), and burning. I will avoid being Cath'd again. It really sounds like you have a lot going on in your life. The wedding may add a stress; but what a wonderful day to look forward to. Sometimes looking forward to something both short term (a sweet treat at the end of the day) and long term (vacation), helps me feel more in control of my life. It helps to shift my focus away from IC. Sending prayers, and a very gentle hug your way!

kimberlee, yeah I have been through many bad doctors (not just Uros and I have alot of health problems) and I have had to get new ones. I usually always have another person at my appointments so that I can make sure the doctor is taking me seriously and things are getting taken care of. The very first uro I went to that diagnosed me would do it with way too huge caths no numbing anything and I cried in her office. We found out later that she was just a GYN and should not have been giving me treatmetns and that is also when I learned to do them at home and I still say it is less painful and it just is more comfortable. Its also nice if your partner or family member can help you out because it makes the expereince a little bit better. I am going through so much medical stuff and it gets frustrating especially because mine are not going to get better and I do get depressed but it helps when I talk to my therapist. My friends did not even know I had IC because I was scared to tell them that they would judge me but with this hospital thing every thing came out and now they know and are being supportive! All I want to do is finish school and become a teacher and then be well enough to adopt and have a family! So everyday I am fighting and working hard on my goals to get there and right now I am very excited about our wedding because he is so wonderful and has been through most of my medical stuff and surgeries. I had to have a major surgery on my spine in November to fix my medical device and he was with me, and then I got diagnosed with neutropenia and he was with me, and then on top of the IC they also found a large aortic aneurysm in my heart and he still stayed by my side! I think that is true love because the other people I had been with were abusive and were mad that I was sick all the time, so I feel very blessed to have him in my life! I am sorry it turned out so long. I need to go lay down I am feeling really horrible again. take care!