Bleeding with Cystoscopy/Hydrodistention

[LooGirl]

Hi. I had a cystoscopy with hydrodistention on 8/16. I have been peeing basically nothing but blood ever since! Dark, cabernet-wine colored blood!!! Not to mention excrutiating, mind-blowing pain. I have been back to my urologist several times and he hasn't seemed anywhere near as alarmed as my family and I are. He told me it's "old blood" from the cystoscopy procedure. This is my second one, the first being two years ago when I was diagnosed. This time the doctor did a cauterization on some badly eroded spots on the inside of the bladder. He also still saw the pinpoint bleeding from two years ago, but he said there was a very thin film-like lining coating the inside of the bladder wall, which he attributes to the Elmiron working to rebuild the lining (I have been on 100MG, 4x daily for two years). However, when he tried to take a small sample to biopsy, the ENTIRE lining instantly DISINTIGRATED!!!! So much for the Elmiron! If indeed, it HAD formed this protective layer, now I have to start all over again!!!!

Anyway, after nine days of non-stop HEAVY bleeding, he had the nurse do a wash with saline to flush out the old blood and clots, then she did a lydocain/water instillation. Then she instilled my favorite "cocktail" (ala Dr. Whitmore) with the heparin, bi-carb, lydocain. When I went home, the bleeding really began to subside, as did the pain.

But then, last night, as I was sitting on the couch, I suddenly felt this AWFUL twinging and pulsating in my bladder, and it felt like I was passing a stone through my urethra. I went upstairs to the bathroom, and peed into a cup. Thick, brownish-red blood, and LOTS of it. Then, the same thing happened a few hours later - another horrible spasm, and more dark blood.
And now, here it is a Saturday, and I am again peeing nothing but blood, eleven days after the surgery. So I'll have to wait until Monday to contact my doctor.

Has ANYone ever had THIS much bleeding post-cystoscopy???????
I am not only TERRIFIED, but I'm weak and in pain. Thanks, I appreciate any feedback. I wish I'd never had that surgery!!!! I was so much better off beforehand!!!!

LooGirl

[sami4a]

If I were in your shoes, I would not wait until Monday, I would go directly to the Emergency Room and let them call this doctor. I think I would also get a second opinion from someone not in his practice pronto.
Sammie

[icnmgrjill]

Please go to the Emergency Room NOW This is NOT NORMAL and of great concern. I've never heard another patient describe this and have to wonder if you have an undiagnosed bleeding vein or blood vessel in there. Get to the ER NOWWWWWWWW!!!! You are losing way too much blood. This is not good.

Jill

[mare mare]

EVERYONE'S RIGHT LOOGIRL, IF YOU HAVEN'T ALREADY, GO TO THE ER NOW!!

LET US KNOW WHEN YOU FEEL BETTER!!!!!!!!

[ICNDonna]

I agree. You need medical attention today. I have had forty hydros and have never had bleeding beyond the first two or three days.

Donna

[Janie Miranda]

This sounds terrible - please go to the ER ASAP. Please let us know how it goes. We're worried about you.

[sami4a]

Your doctors lame explination of the blood as "old blood" puts him in my incompetent catagory. I suggest after you get yourself under control you shop for a new Uro as something went very, very wrong during that hydro and he isnt doing much to stand up to it. Second I would find myself a lawyer and charge the Uro for my pain and suffering. A good lawyer will get hold of the surgical records and have them evaluated by another Uro.
To pass off such suffering and bleeding as "Old Blood" without a immediate investigation is criminal and negligent.
Color me mad,
Sammie

[LooGirl]

Thank you SO much, everyone who replied with such great concern. I listened to everything you had to say and I appreciate so much being able to "vent" on this website. Here is what has happened since my first post.

I decided NOT to go to the ER, mainly because I have no confidence that anyone there would have the slightest knowledge of IC and I did NOT want to be handled by some intern who didn't know beans about my condition and might hurt me further. My symptoms -though quite alarming - had not changed too much in the past 24 hours. So I felt confident in waiting until Sunday a.m. (today) to call the on-call doc at my urologist's practice.

BIG MISTAKE!!!!!!!!!!!!!!!!!!! What a condescending JERK he turned out to be!!!! This is a doc I have not met, though he is in the same office as my uro.
So I explained to him that I am bleeding twelve days following the cystoscopy, and having had my bladder flushed and supposedly cleaned out from any "old blood" this past Thursday, I was alarmed to be passing a dozen good-size clots and LOTS of blood again. I mean, where is this "new" blood coming from?????

So he says, "Yeah? So? You had a hydrodistention, they stretched your bladder, you have pinpoint bleeding. What do you expect??" I said, "I do NOT expect to be bleeding toliet bowls full of Chianti nearly two weeks later and passing clots!!!" He said, "Come on now, if you were bleeding that much, you wouldn't even be able to pee." I said, "It DOES hurt to pee, aLOT!" He said, "But you have IC, it's a sypmtom." I said, "But not for ME. I don't usually have pain when I pee." He said, "So what do you want me to do about it? It's no big deal, this bleeding. Just call your doc on Monday."

NO BIG DEAL???????????????????? I said "Fine." and hung up. AAARRGH!!! I have never been so humiliated and angry. Who IS this guy?? WHY is he a doctor???????????

My friend suggested I go first thing Monday a.m. over to my gynocologist's office, with a bloody urine sample, and put it in front of her and say, "HELP ME!" I just started with her a few weeks ago, and she is young, fresh out of med school, a UROgynocologist, and best yet - FEMALE. Maybe that's the problem, these men are callous and arrogant. Maybe, if this new gyno can't treat me (but I'm hoping she can), maybe she will at least LISTEN to me, send me in the right direction (even if it is the ER, but I don't think that's the right course), or at least phone my uro and give him an earfull. So I will do that tomorrow.

Maybe if I just went to my uro, threw the jar of blood in his face and passed out on the floor of his waiting room, maybe he would help me.

Does anyone out there know of any good uro's in Delaware? I have to stay in-state because of Medicaid.

Thank you!
LooGirl

[Janie Miranda]

My gosh, arrogant jerk is right. You've GOT to get out of that whole urology practice and find different doctors. This one is probably covering up for the other one. Good luck and I sure hope you feel better soon.

[mela414]

I just read your post. I am appalled at what you have gone through! How are you doing?
Have you considered returning to dr Whitmore's office. I know you said you can't go out of state but mabye she can refer you to someone locally. I have had good experiences with her. She is quite competent.....and being female also helps.
I hope that you are feeling better.

[LooGirl]

Hi everyone, here's an update: I woke up first thing this a.m., ready to take a urine sample over to my new gynocologist. But when I peed, there was far less blood than there has been all along, though there were a few clots. So I decided to wait a few hours to see if, by moving around the house, there would be any change or increase in blood & clots.

But just then, my urologist called. He was SO nice, and he said, "I understand you put in an emergency call on Sunday? What's going on?" So I explained everything that had happened since he saw me last Thursday, about the spasms, the new blood, the clots, etc.

Well, this is the first time he took his time and explained exactly what he thinks is happening. He believes that I am passing dislodged scabs from the bladder wall, from the pinpoint bleeding and eroded areas which were stretched to capacity during the hydrodistention. He said it does happen, usually about 7 to 10 days following the procedure. There will be an increase in blood and clots for a few days, then it will calm down and the bleeding should subside. But then, he said, the whole process could start up again the following week because, since the bladder is moist, the scabs that reformed may again become dislodged. This is especially true because as we move around and become more active, the scabs will eventually come off. If this happens, I may again experience new and increased bleeding and even more clots. He said each time new scabs form on the bladder wall, they should become smaller and the bleeding not as severe. He equated it with having a scab on your kneee, picking it off, and having a new, smaller and thinner scab form until finally the whole healing process is done.

This explains why I had these horrible episodes of painful spasms that felt like stones. It was me passing clots. He also said that my platelet count was low on the day of the surgery (mine is 76, with 140 being the beginning of normal range). I knew this because I had blood work done several times lately. The uro believes I may have been on too high a dose of Elmiron for my body size (I weigh 105 lbs. and was on 400MG daily) and wants me to decrease the Elmiron to 200 MG daily). He is also looking in to how we might instill the Elmiron directly into the bladder with my cocktail. Does anyone else do that?

Anyway, he said this healing process may take a month, and to take it easy, not strain or lift and no excercising until the bleeding stops. Believe me, I have been so tired and weak, all I do lately is read, watch TV and get on the computer when I can sit long enough. I will have another cocktail instillation tomorrow to help with this hideous pain, and more bloodwork to check the platelet count.

So, I feel MUCH better about things and have more confidence now in this uro. I have always really liked him and his nurses and staff have been so wonderful and kind to me these past two years. So I will put my trust in him again. I think he was very upset that the other doctor had been so mean to me yesterday. I know he is very upset that things turned out this way. We both agreed - no more hydrodistentions for me ever! He did offer to do the simple scope with light in his office to look inside, but I said. "No way, no one is getting near my poor bladder, except for instillations!"

I know this post was really long, but you have all been so kind and concerned, and I wanted to really explain what happened in case anyone else ever has a simliar experience. Without a good explaination from your uro on what to expect, it can really be a nightmare experience! I feel better about things now. But if things go wrong again, you will all be the first to know. Thank you so much for all your help!!!!

LooGirl

[sami4a]

Loogirl:
Naturally this guy is all sweet now, he probably knows he may have pushed you into a serious complaint or litigation.
I speak for myself but his explination sounds lame, and if it were me I would at least take myself to a new office for a second opinon. If he is so right, then a second opinion will back him up, if he is full of it you better be finding out. I fear you are a lamb at the slaughterhouse, and are too loyal or trusting to comprehend it.
I would definately take the speciman to the Gyno you like and run this gobble gook explination of the Uro past her. This would at least let someone else out of this practice in on the situation. I suspect he stretched your bladder way, too far and now is tap dancing like crazy due to the symptoms you are having. Why would a Uro do that to a person with a fragile bladder?
Gee-like maybe his judgement isnt the best-huh?
And dosent this just make us all want to run out and have a hydro?
Sammie

[magmouth]

Loogirl: Sounds to me like he was being nice cause he knew you were at a breaking point. It does sound reasonable about the over dose of Elmiron, but your uro should have known and considered that in the beginning.

I think if you do not remain satisifed with this doctor, please shop around until you find someone you are comfortable with. I live in a small town too, and my closest big city is Pensacola, FL and was also having some doubts about mine, but he has come through for me so far and I'm sticking with him for now.

I think you need, and all of us need, a doctor that is willing to explain things to us and not give us the run around, I think this is just good common sense for IC patients because when we don't feel in the know it just raises our stress level.

We are left with the feeling of no control over our bodies all ready with IC, we dont' need anyone making us feel even more so.

I know how small Delaware is, I lived in Dover for many, many years.

[sami4a]

An interesting trend is now underway which indicates insurance companies will no longer be paying on doctors requests for cysto/hydro as a routine method of diagnosis for IC. The rationale is that they are expensive, dont give any more information than symptoms and treatment is based on symptoms regardless of what is found in the cysto. For those who have a record of being put into remission for a period of time and the procedure having some merit based on relief of symptoms, they probably will continue to pay. The Potassium test is becoming the accepted test now because it is not invasive, is more than 80% accurate, and does not require hospital.
After a hydro some of the questions to be answered are: Was the treatment plan radically changed after the hydro? Probably not because the treatment plan is fairly standard and symptom based.
What new information came to light that justified such an uncomfortable and expensive procedure? That you still had IC (duh!)?
Did the side effects and expense justify then information gathered? The doctor probably knew just as much after as he did before.
Is it a prudent practice to stretch a fragile bladder and traumatize it without a darn good reason other to "look?"
Did the procedure help the patient?
Sammie

[LooGirl]

I have mixed feelings about it, which lean far stronger to the "Don't Have This Test!!". Because my platelet count had dropped significantly over the past six months, and my liver enzymes had risen, and because I bruise if someone just sneeezes on me (slight exageration), and because my IC pain was getting a bit worse lately after being on a sort of consistent plateau of manageable pain over the past year, my uro and I discused the posibility that there could be something else going on as well as IC. He first ordered a CAT Scan of my pelvis and abdomen, then an ultrasound to look for possible tumors, abnormalities, etc. They found a few things, like a few tiny cysts on my kidney and pancreas (too small to worry about, but to keep an eye on), but nothing else.

So we discussed having another cystoscopy with hydrodistention to have a look to see if the Elmiron has been working since the two years I've been on it, and also to look for Hunner's ulcers. I admit, it sounded like a good plan to me. What he did NOT do was to discuss with me any treatment he might do once he got in there. And so, when I woke up, and he told me he had cauterized my bladder in 4 places, I was quite surprised, to say the least! He also did not discuss with me about the possibility of bleeding for so long. All of this, as you now know, was discussed two weeks AFTER the procedure, when I had been bleeding non-stop.

As I posted before, the uro DID see a film-like layer coating my bladder wall, which he attributed to the Elmiron working. However, when he overstretched the bladder, the filmy lining broke uo and DISINTEGRATED! So, the conclusion is, the Elmiron WAS working, but the bladder NEVER should have been stretched like that. Now I basically have to start all over. The places where he cauterized should heal and protect the bladder, and there were, thankfully, no Hunner's Ulcers, but there were a few badly eroded spots and lots of pinpoint bleeding.

So, I am off Elmiron for a month, and will get bloodwork to see if the liver and platelet counts have resolved. If so, we can assume it was the Elmiron and I will have to find a new course of treatment. If the bloodwork is the same, then I will probably go on a lower dose of Elmiron and just keep a close eye on my platelets/liver enzymes. So it's a tradeoff: the Elmiron DOES indeed form that protective layer, but with the risk of side effects. And the lesson is, do NOT have a Hydro Cystoscopy unless absolutely neccessary. I now I will never have another one! I can't believe some ICers actually have them as treatment!! How does their bladder handle the stretching????

P.S. I FINALLY stopped bleeding yesterday, after thirteen straight days!!! The pain is there, but is definitely getting better, especially with the installations.