Had cysto w/ dialation - pain unbearable- mentally feel like victim

[shari]

This was my third cysto w/ dialation and the most painful - during and after ! The first two i had were with a different doc ( but unfortunitly he no longer takes my insurance and i had to change) I TRUELY WISH I DIDNT !!!
The first meeting with the new doc was just talking and questions. no exam no anything else except setting up a cysto for following week. I wasnt scared or anything had two before and besides a little pain for a few days no problem. the hospital called to set up appt. and said there was no sedation ordered for procedure. Me being in pain for a very long time with different health problems didnt like that idea or i called the offfice.
The nurse very understanding said no problem she would call over and tell them i was to be put to sleep for procedure. Thank God that was fixed.
At the hospital they said it would be more like a sleeping pill affect once injected into my iv.....ok sounds good....it never happened...
i have never felt pain so horrifiing as i did that day... he was not gentle about anything streching bladder hurt i screamed . nurse said relax almost done....my ----. he then procedded to go up to my kidneys to see if my upj obstruction had come back ....again i screamed....then the most unbelieveable pain he streached both opening to kidneys and my urethra with two different sizes one after another !! If i could have gotten my breath enough to fly off the table i would have. I have several questions maybe someone can answer maybe not but i hope so ..... my family doc says he shouldnt have done it with out knocking me out. That I totally agree with. but after he had finished with all the pain and with nurse standing next to him he said he needed to do internal like my gyn did inside internal but then he put his finger in my anus also ....is that normal ? The whole experience has my body in termendice pain and my mental state isnt very healthy right now either all i wont to do is cry every time i think about the whole thing.... I know this is been very long but i needed to let it out and see if alll this was normal for some doctors or if this one just shouldnt practice with ic patients.
please any response to my questions would be appreciated....

NOTE: my spelling is horrible please forgive any mistakes.

[vm]

Oh my word..... :( :( :( :( No WONDER you are feeling so emotional!!! You were victimized in my book. :( You were told you would have sedation and then it did NOT happen.

I don't know how any of this works legally at all and I sure wish I did. Was there an anesthesiologist???? If so, can you get a copy of his notes for the procedure?????

That is terrible and you have every right in the world to cry and feel violated. He had no right to do that to you. :(

[tigger_gal]

did this doctor do a hydro while you were awake? it seems that every thing he did was just wrong.... I would never see him again, after you get your results and seek a new uro..
sending you hugs.

[shari]

yes he did do a hydro told me he couldnt see anything see ya in 12 weeks, but lucky me i got 4 pictures of my bladder for souevir

[shari]

no there wasnt any one but two nurses, xray tech and him...the one nurse said she was puting in the med and i saw her put needle into my iv...just nothing happened after words but pain and lots of it.(I know every one heard this one but i agree who ever said it first hit it on the nose) peeing razor blades and feeling my urinary tracks and left kidney are killing me... My partner thinks thats why i feel like I'm going to pass out when i move....no antibiatics no pain meds where sent home with me ....thank God i had some here already.

[ICLori]

I'm so sorry this happened to you. ((HUGS)) They should have had you fully sedated for this, and they should really have given you either general anesthesia or a spinal (epidural) so you wouldn't feel a thing! It was absolutely criminal that they didn't sedate you properly for this. I agree with everyone, I think you should file a formal complaint against this doctor and his team, and seek a new doctor immediately, never return to him.

As for the internal exam, doing a rectal exam is actually supposed to be part of a good yearly gyn exam. Many gyns skip that part, though, probably because it's unpleasant both for the doctor and for the patient. But it is a totally normal, expected part of the internal exam. I don't really like that part of the exam, to be honest, but I know when the doc is doing that, he's able to feel more things about my female equipment than he can just vaginally. So it's really just a much more thorough exam. He wasn't being abusive by doing that part of the exam. Did he tell you before he did it, what he was going to do? I find that the best doctors ask permission before they do a rectal exam, because many women are very sensitive about that particular exam.

Blessings,
Lori

[sami4]

The first thing I would do is file a formal complaint at the hospital it was done at with the Chief of Surgery. The second thing I would do is get a good lawyer who maybe can compensate you for horrific pain and suffering and the third thing I would do is never, ever go back to that sadist.
Sammie

[Silverfern]

That's appalling!! I have to say you've got to wonder about that nurse too. Surely she must have realised you weren't sedated. The whole thing sounds like an absolute nightmare for you, and like the others have said, I'd not be going back to that guy in a hurry!

Look after yourself and I hope you're feeling better very soon.

Hugs

[ICNDonna]

I think it would be a very good idea to write a letter to the Administrator of the hospital where you had this done. I can't imagine having a hydrodistention with no anesthesia. It would also be a good idea to get a copy of your medical record so you can share it with your new urologist --- I assume you will be making a change?

Warm hugs,
Donna

[poetgirl]

You poor thing! I am sorry you had to go through that, and experience so much pain. My doctor tried once to do an in-office cysto and didn't get very far before he decided it would be better to do it in the hospital under sedation.

As far as the rectal exam thing goes, yes, it is something that doctors will do in order to feel for the placement of your internal organs (gynecological/urethral) but generally they ask permission before doing that, or at least try to make the process less uncomfortable. Ethically he probably was not doing anything wrong (especially with a female nurse present) but his manner could use some fine-tuning, since it doesn't sound like any of this was done very compassionately.

I agree with Donna that you should write a letter to the administrator of the hospital and find another urologist!

Hope you feel better soon. :kiss: If you have any Pyridum or Urised, that may help with the bladder pain/burning sensation during urination. (There is also AZO and Cystex, which are over-the-counter versions of these meds too.)

[kennedy]

Hey Shari,

My God, I am so sorry you had to go through that!! How unethical and barbaric!!

I had a hydro w/ dialation done about 6 months ago. Luckily, I was put under for it, but when I woke up it was an explosion of pain. I won't ever be dialated again. It hasn't helped and the pain was excruciating. But, the nurse did tell after I woke up that my uro put a pain suppository in my rear end to help with bladder spasms and pain. Some sort of opioid derivitive. I would find out about that and make sure that that is what they to you, just to make sure that there wasn't some kind of funny business going on. After all, it made you uncomfortable right?? So, you have a right to know why this guy had his hand anywhere near your rear!!!

And I think Donna is right, any doc who isn't perceptive enough to understand that doing a hydro w/o anesthesia is inhumane, isn't a doc that I wan't. U should get a new one, like NOW.

I hope u feel better and I hope that you can recover enough from this to be able to trust another doc.

Kennedy

[Imustpee]

How awful for you!!! I was knocked out when I had mine..I couldn't imagine being awake for that!!!:cussing:

[IC SARAH-CPP]

This really is terrible. I know how you feel in that I had a terrible surgery one time too and was sent home w/out pain meds and a large incision on my belly. I took weeks before I could even talk about it, I too felt violated.
I wrote down what happened and then wrote a formal letter of complaint against the doctor. No one ever contacted me about it but I felt better just doing it. I refused to even go back to him for my after-surgery consult, I switched doctors right away. That was THE BEST thing possible for my mental health. I dreaded going back and facing this doctor.
It took quite awhile for my new doctor to earn my trust. But we have a wonderful relationship now and hun, let me tell you, seeing a doctor who cares and treats me like a human being, has made SO much difference in my care and my life. I no longer carry that guilt I did before, I realize I have rights too!! I am a person, just like them. I think sometimes doctors forget they are humans!!
i dont know what else to say except I think you are better off finding a new uro. I cant believe he a.) didnt knock you out for a hydro b.) sent you home with no pain meds!!
And the anus thing, umm yeah, they do that to me at my yearly, not very fun!!
Hang in there hun.
Love Sarah

[chele]

hello all:) omg i hope someone has some encouraging words for me, i feel at such a loss.

readers digest of what is going on

July 8, 2006- went in for partial hysterectomy, prolift, bladder sling and prolapse reconstruction and cysto

epidurel only worked on one side so recovery was HELL. vaginal procedure (thank GOD!) 18 stitches more or less on various places on the outside of me and about the same inside.

had a horrible recovery in the hospital and alot of pain issues. started to void 2 days after surgery and it was very painful. i told the nurses that i thought i had a UTI. 5 days in the hospital and no one did anything to investigate why i thought i had a UTI and needless to say i got released with it.

the big OUCH-- i had a UTI that went untreated for 5 days. OMG!!!!!!!the pain meds masked some of it. I wound up with 101 temp, severe chills, body aches AND the voiding that i was doing all STOPPED!!! thank goodness for the super pubic cath.

yea, a UTI for normal people with out IC is bad, but can you imagine for us. and my already raw bladder was now really bad because this went untreated for 5 days.

here i am.... July 25.. and it hurts so unbelievably bad to even TRY to void. i just cannot get over it. what bladder anti spasmodic works?! i have tried peridium, urell... doesn't work. Percocet doesnt work. it is razor sharp pain, on fire, outrageous.... almost 3 weeks post op and i cannot pee!!!!

my husband says for me to have paitence HA easy for him. if i could only see some improvement... but nothing. what should i do? is this normal for it to hurt so badly after a cysto?? and what IS a bladder instill??? do they leave that in you?? what will help me. I still have a super pubic cath.... it is such a PAIN to go to the bathroom. i am so depressed!!!! and getting more discouraged every day....so sad.....:help: :bonk: :mad: :headbang:

[Krausky]

I have a question- I had a cycstocopy done about three years ago to diagnos my IC. It wasn't painful during the procedure- I was knocked out. Afterwards it was a nightmare. I don't know what they did to me- but I could not sleep on my back or on my stomach I had to sleep on top of my arms in front of my chest. My kidneys hurt so bad. The only thing helped was being in the bath tub. I must have been in the tub all day. I read some similar posts- did they dialate my kidneys? I have a better doctor now- but he wants to do another cysto on me and I do not want it done. I must have peed blood for three or four days the first time I had it done. My doctor wants to do it in the office without being knocked out at the hospital. I told him the first time that it hurt so bad I could not see it being done in the doctor's office. He said it hurt so bad because I was in the hopsital up on the table. He said it wouldn't be as painful the second time around. Do they do different things when you are knocked out to make you hurt? Did they go up into my kidneys?? I love my doctor now, but the thought of going through that kind of pain again is unbearable.

[Krausky]

Michelle-
I have no idea what to tell you- maybe try having a rescue done?? Maybe?? That's where they put something in your bladder to kind of numb it like novicane. I thought it was going to be horrible but it wasn't that bad. I know I was in horrible pain after my cystocopy- but I can't remember how long it lasted- you should probably go back to your doctor and see if he can't put you on some long term medicine. Pain meds never worked for me all it does it make me a little loopy- but it always still hurts. Have you tried meds long term like ELAVIL? or ELMIRION?
Hope that helps

[chele]

Krausky :)

thanks for the info!!! :) :bow: I am going in on Monday and i am going to ask about that. i totally need something to numb me. this is just wearing me out!!! hurts soooo bad. i have managed to void some and might get this cath out soon BUT it still hurts me so much. I take the percocet and i need it but that only takes away some of the pain. My bladder is so raw. I had no idea that a cysto coule hurt so much. is all this from the UTI or combo of the procedure and the uti. I am exhausted from hurting so much. unbelievable. I sure do look forward to when "relieving yourself" really is relief!!! LOL :toilet: and get this, my baldder hurts so much it wakes me up in the middle of the night-- that is only after i had been dreaming about it all night because i am in so much pain. Could there be another problem or is this normal to be in pain after this procedure??? I so need my bladder to be numb..... and one more question.... i dread.... how do they take out the suprapubic cath.... gulp..... the whole thing just grosses me out. i gross me out hahahahaha. they must have to put stitches there right??? i mean, i have a hole in me!!! eeeewwwww. :bonk:

thanks for your help!!:smile tee

Michele

[seattlegirl]

That's so awful. I see it's been a while since you posted, so I don't know whether things worked themselves out. But you should definitely talk to a lawyer. That's certainly below the standard of care (anything you read says that cystoscopy w/hydro can't be done without some sort of anesthesia), and bordering on assault. I'm not saying you need to actually take them to court; I'm sure they'd offer a settlement that could help pay for (1) the cysto itself (you shouldn't have to pay for that misery); (2) any follow up treatment; and (3) maybe pain and suffering.

If you've resolved things, let me know how things turned out.

[luvswesties]

:mad: :mad: :mad:
WOW that was totally wrong! Especially when you are screaming in pain. I'm so sorry you had to go through that. I would totally find another urologist and write a complaint to whatever hospital you went to. My urologist told me that all of his patients who have IC undergo hydro WITH anthesia. Its too painful without it.

Anna

[marsi4]

I'm sorry you were subjected to this kind of pain. I,ve had two minor hydro-distentions in my uro's office but I was already in so much pain that he had only put 250 cc of water in my bladder and I stopped him. He used some ointment or freezing gel on the outside of my vaginal area and the cystoscope was excruciating when it was going through my urethra. The third time I had it done under anesthesia and had terrible burning in my vagina area. I think I had the burning from the dmso that the nurse removed via catheter and some of it leaked on my vaginal area. I had a dmso instill following the hydro distention. I'm not sure if the burning was from he cystoscopy or the dmso but I burned terribly for three days.

I,m wondering if he filled your bladder with water? If he didn't it could be why he didn»'t see anything wrong with your bladder. What angers me is that you were lied to and told you would be given general anesthesia and weren't. I'm not even convinced that you were given any pain meds, because if you were you would not be in so much pain, unless he didn't wait a few minutes for the medication to take effect. I went to a new uro a while back and he wanted to do an in office hydro and told me that he doesn't give general anethesia when he does them because he didn't have an anesthesiologist available and I said no way. I was already in so much pain I wasn't going to let him torture me even more. This procedure should be done under anesthesia and doctors who want to do them without are insensitive and cruel. The anal exam is normal, many doctors do it, but having all that done at once is too much. You were supposed to be given medication for the pain afterwards for at least 3 days. If you are still in a lot of pain I would call him up to write you a RX. Hope you get better soon. I have one coming up and might cancel because he wants to keep my bladder stretched for 20 minutes.

Marsi4

[Trishann]

I am sorry you went through all this pain. I would run from this doctor and not turn back. This doctor has no compassion and believe me, you don't want that in a doctor.

I hope you look for a different doctor for you sake and peace of mind.

Hugs, Trishann