Back From Cysto - HURT BAD

[IC SARAH-CPP]

Okay Everyone,
Here I am (alive too!!) back from the cysto w/hydrodistention and biopsy I had done last Thursday. I have to admit that the pain from it was worse than I had expected. I woke up from the anesthesia and felt like someone actually had a knife up my pee hole!! LOL. But the doctor talked to me and I cant remember a thing about it!! HE did tell my husband that my bladder was really small and very inflamed, but that my blood pressure didn't rise when he filled it, so he wasnt sure if it was IC. I dont know what that means, but I guess he said that my blood pressure should have risen from the pain. I think that is dumb, because I was in SO much pain when I woke up and have been ever since, so obviously I have a lot of pain with this procedure. So he set an appt for next week and I will find out what is going to happen then. And he did give me a lot of vicodin after wards, I was suprised about that because before hand, he said he wouldnt give me any afterwards.
The nurse who took care of me in the hospital was such a b****. I am so mad about it!! She is the one who took care of me the last time I had surgery and she was mean then too. She was a horid woman. My uro wrote out the insturctions that I could have some morphine (not sure how much) every 15-30 minutes and after the surgery she didnt give me any and was trying to check me out about 30 minutes after surgery, before I had peed or she had even asked me if I was in pain. Well another nurse came over and asked me why I was cyring and I said, I am in pain, so he read my chart and said, well you get quite a lot of morphine, but they havent given you any yet. So he gave me a shot and I felt much better. Then my husband came in and told me that the uro told him he wasnt sure if I had IC or not now. So I started crying, because I was upset, I want to know what is wrong with me. WEll, I guess I was crying too loud, because mean woman came storming in there and stood there glaring at me until I asked, What??? She then said Well you are disturbing everyone!!! :headbang: I told her to get out!!! :cussing: Anyway, it wasnt a pleasant experience.
I would love to hear some comments back as to whether or not you think she was mean, I dont know if I am jsut overreacting or not. :help:
Love Sarah :love:

[vm]

She sounds very unsympathetic, to say the least! :(

I have NEVER heard that about a doctor checking to see if your blood pressure rises when the bladder is distended - or I guess of that being an indicator of IC??????? When do you see your urologist for a follow up? I would ask him about that - just to make sure your husband understood correctly.

The first few pees after the procedure are not fun at all - I felt like I was peeing glass. But it got better within the day even - as long as I was taking my pain meds.

Hope you feel better soon. :kissing: At least it is over, right?

[IC SARAH-CPP]

Yeah, at least it is over!! I am still having SO SO SO much pain when I go pee. It hurts so bad, I just sit there with tears streaming down my cheeks. I hate it. I know that the blood pressure thing is true because I had an appt today with my ob/gyn and she said the same thing, the uro had sent her a report. YOu know, the anesthesiologist(sp??) gave me 3 whole syringes full of morphine before the procedure even started, then gave me versed, then I had the anesthesia, so maybe that is why my blood pressure didn't rise at all. I dont know?? But it sure hurt!!!!
Love Sarah

[Babs RN]

Sarah,
I am so sorry. We are not having luck with these appts(at least you and me). I have never heard of that kind of idiocy that that nurse spewed your way and she makes all nurses look evil Nurse Ratchett. About the wheter or not you have IC thing, I know that has to be frustrating. Drama is still continuing. Nuff said about that. If you need to talk, please PM me and I will be glad to be your shoulder to cry on. I makes me feel like at least I can use my nursing skills and understanding to help my IC buddies. You are not intruding if you call, don't worry about that. It's Valentines Day and hubby is in Iraq so like I said anytime, day or night.

Hugs and healing thoughts,
Barb :love: :kissing:

[Babs RN]

PS Morphine causes urinary retention. :bonk:

[SharonA]

Sarah...

I am so sorry that you are still experiencing pain. Your urethra is probably irritated from the procedure. I remember that I could feel the catheter when I first woke up. I was confused as to why I hurt down there until I told the recovery nurse about it. She reminded me that I had been catherized. It hurt like the dickens when she removed it, also.

BTW...Were you given an antibiotic afterwards? I ask because sometimes we can get a UTI from being catherized.

It is inexcusable for the nurse to treat you so badly. :mad:

I hope you begin to feel better very soon. :kissing:

[codyryonwoodward]

Sarah...I am so sorry you are still in so much pain. The last hydro and cysto I had in August did the same thing to me. Anyways make sure you do not have a UTI from the procedure. I ended up having a awful one then on top of it having a yeast infection to. I have never been told about the blood pressure thing before. Thats a new one for me. Has anyone else ever heard of this before? Anyways I hope you start feeling better soon. :grouphug:

[Babs RN]

That's it, I've decided to become the first traveling IC nurse who will go with everyone to their appts and procedures. I am tired of these mean nurses. Believe me I have gotten my share too and then tell them I'm a nurse and they button up. Odd, huh? I guess I wll have to wait to be the traveling IC nurses after I get myself fixed.................. :hmm:

Hugs,
Barb

[bunnykinb]

Sarah,

I would write a complaint letter to the hospital administrator once you are feeling better. People who have never had any urinary pain really don't know what it is like. I feel your agony. I had pelvic pain for 2 weeks after my hydro, but the vicodin helped. As for your pee pee, you can buy over the counter "AZO Standard" or Uristat. Both will make your urine orange. You will need to wear a panty shield unless you want stained undies. This is comparable to Pyridium that doctor's prescribe. It is okay to take with the vicodin because I had asked my uro on this.

I hope for your relief soon. That dumb cystoscopy is the one that caused your pain. And, for the uro to say that because your blood pressure didn't rise may mean you may not have IC is wrong. IC can be accurately diagnosed with a cystoscopy camera to view your bladder lining.

bunnykinb

[Laurie248]

Whoa, ok. I am scheduled to have this done next Wednesday and now I'm thinking about canceling the appointment. Is it really this awful????? I feel sick now with panic.

HELP!
Laurie

[SharonA]

Laurie...

No, not everyone has pain and/or discomfort after a c/h. I did not. Like I said to Sarah, I had some pain (more like burining) when I woke up and could feel the catheter inside. Then, when it was being removed, I could feel it as it came out. I also had burning upon the first few times I urinated after going home. I was sent home with a couple of pain pills, but never needed to take them. I spent most of the day at home in bed just resting, but was up in the evening and fixed myself a bowl of oatmeal and sat and watched some TV with my husband. The next day, I was able to do pretty much what I wanted and did not have any pain from the procedure.

Most doctors who do this procedure give antibiotics to stop any chance of infection. Although, from what I have read here, some do not. Just ask your doctor for them.

Do not panic because Sarah is having some problems after her c/h. We are all so different and react differently to procedures, meds and treatments. Just because some of us have had some problems does not mean that you will. :kissing:

[IC SARAH-CPP]

I know a lot of people told me that this doesn't hurt, including my uro, so you might not have a lot pain with it. I will be honest with you and tell you that my pain is very, very bad from it. I took four days off work, then had to take an additional one day off, now I am sitting at work in agony. My uro gave me 60 vicodin that I took all of it and had to request more, so it is pretty heady.
I wouldn't cancel your appt though. Many people get a lot of relief from this procedure and many don't have any pain from it.
Let us know what happens with yours
Love Sarah

[IC SARAH-CPP]

Okay you guys, I am in so much pain from this stupid hydro!!! If this is what some of you go through every day, I commend you , because I don't know how you do it!! I literally am crying about 15 hours a day. Every time I have even a tiny bit of liquid in my bladder, I feel the most excruciating pain in there and go sit on the toilet, only to have one of two drops come out. Yesterday, I had little drops of blood coming out of there. I know this sounds gross, but I had hubby look in there and he said my pee pee hole is SO swollen up and all red!!
They have given me a lot of 5 mg vicodin, but I can only take 8 a day, and they are NOT even touching the pain I have. I dont want to call the uro because they were so mean to me in the hospital and treated me like a drug addict, I am afraid if I call, they will think that even more.
What should I do?? Did any of you have pain this bad. The only way I can describe it is to say it feels like someone has a knife inside of me. Or like they reached down and just grabbed my thing so hard!!
DYING HERE
SARAH :headbang:

[Sarojini]

Laurie --

SharonA is so right. Everyone responds differently to the cysto/hydro. When I had mine, it was not too bad. I peed blood the first few times after the operation, and had pain for a couple of days. I also had a lot of body pain from the anesthesia (I have fibromyalgia as well as IC), but rest and pain meds helped me through. I had my procedure on a Thursday, so I took Thursday and Friday off from work. I planned to go back to work on Monday but my husband made me stay home one more day. He was worried since I still had a little pain around my chest area, and since I'm asthmatic too, he wanted to make sure I wasn't on the brink of an asthma attack before I went back -- however, I could have worked Monday if that had not happened.

Basically, I did not find the procedure too bad, even though I was found to have pretty severe IC. So, the moral is... go for your cysto, it's better to know what's wrong so you can get to feeling BETTER SOON :)

[rhea]

Sarah-I can relate. I have had MANY cysto/hydro that were "ouchy" but I got more relief out of them than the pain. Had my last one last august and am still having problems. I was like you. In so much pain they kept me in the hospital for 4 days with morphine. I think you def need to call your uro and let him/her know how much pain you are in. There could be something else going on there, especially since it sounds like you were not given an antibiotic afterwards. You could have a flaring uti and just not realize it because everything hurts. As for the mean nurses, you need to write the hospital and demand a response. Let them know about each time you were there and that it was the same nurse who was not compassionate and basically mean and awful. They need to know these things. Believe me, you are not the only one who she is treating this way. I hope you are feeling better soon, but please call your doc.
Sending big soft fluffy hugs :grouphug: and a shoulder to cry on while sitting in the bathroom (been there lots!) :kissing:

[IC SARAH-CPP]

Yeah Laurie, one thing I did want to tell you was if you look through the post about Hydro's, I would bet that 75% of people who have them, have absolutely no problems and very little pain from it! Please don't let my troubles scare you away from it. I think that every person with IC does need to have it done, if only to have a good look at what your bladder looks like.
Love Sarah

[Laurie248]

Hi everyone:

I think I am now officially, totally, confused. I met with my urologist today. Next Wednesday, I am having a diagnostic procedure done -- "cystoscopy with random bladder biopsies" is what it is called. I asked my urologist about the whole "hydrodistension" element and he said that when a cystoscopy is done, the bladder is hydrodistended with fluid to get a better look at it -- you *have* to have SOME fluid in there to see what's going on. But the hydrodistension where the bladder is filled to 2, 3, 4 times normal capacity is NOT always done - and may not be done in my case. If, when looking at my bladder, he sees that it is a normal capacity bladder, he said: "why would I overdistend it? That makes no sense. If, however, I go in there and see it is of minimal capacity and/or below normal capacity, THEN I would go ahead and overdistend it."

Does this make sense to anyone?

He also told me that I would be getting my sedation for this intravenously. That it would be Diprivan (I think it's propofol) given through an IV. They may give oxygen or something once the Diprivan makes me doze off, but other than that, no other anesthesia. He also said that he would put a strong numbing agent in my bladder so I wouldn't have pain when the procedure was finished.

I'm SO CONFUSED. Why is the procedure I'm having sounding so much different than what everyone else is talking about?!?!?!?! What's going on?

Help!
Laurie

[bunnykinb]

LAURIE,

After your procedure you should be fine and not in any pain. But, do ask your uro for some Vicadin just in case he does have to overdistend your bladder. I hope it helps you.

bunnykinb

SARAH,

I was like you with pain after the hydrodistention. My bladder only had a 1/3 capacity. My uro said I would be in pain for 10 days after and yes, I did take off 2 weeks from work. I used up all my vicadins, but by the time towards the end of the 2 weeks, I wasn't feeling so bad. Unfortunately, the hydrodistention did nothing for me. I have been having pelvic pain for days out of every week since the beginning of last year. My uro wants to go an office hydrodistention without anesthesia and only using lidocaine. I asked my primary care doctor for a 2nd opinion urologist. If after 10 months of my current uro, he still hasn't done anything with my constant pain, I should have asked for a 2nd opinion sooner.

I don't know how many people out there have continual pain practically everyday to not be able to function properly or are constantly taking pain pills.

bunnykinb