Announcement

Collapse
No announcement yet.

Hydrodistention- Neg or Postitive Results

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • jdsong1
    replied
    Hydro worked for my mom so far

    Mom my has not had to take her pain meds for two days now.. She had a Hydro two days ago and she had very little pain after it.. She also told me today the pain is not there and she does not have to run to the bathroom as much. She is dizzy some but loves not having the pain. The Dr has her on a low does of Prednsione for 6 days and a antibotic for 6 days. I hope its not the Prednison making her feel no pain. She is on Pred for only 6 days so we will see but hoping the Hydro helped. So far so good. Its great to hear her more upbeat and happy again.. How many Hydros can one get and how ofter?? She so far has had a very positive result!!

    Leave a comment:


  • Landish
    replied
    Originally posted by Mickstjohngirl View Post
    I noticed though as I got older, the IC got worse! Mom thinks it's because I did too many cysto/hydro. Any of you also have had a lot of cysto/hydro done, only to get more pain??
    My IC is worse every year and I have had 2 cysto and 2 cysto/hydro.
    I don't think our IC is worst because we did cysto/hydro, I think it getting worst because of the constant inflammation of the bladder. If you have an open scar and you keep on pouring acid (urine) how much time do you think that the body can handle this amount of inflammation? The bladder deteriorates.
    If I could do a Hydro once again I would rush even thou it lasts a short period of time, this quality of time is very precious because as you said “I actually felt like I had no IC.”

    Leave a comment:


  • ICNDonna
    replied
    I have had the procedure over forty times and it's what has given me a life.

    Donna

    Leave a comment:


  • luvsterriers
    replied
    Well I have had cysto/hydro done 4 times. I was diagnosed with IC in 2002. Actually the procedure did make me feel normal for a week to a month. I actually felt like I had no IC, but then the pain came back again. I was diagnosed with IC at 24 and I'm now 31. The urologist who diagnosed me with IC didn't even examine me at that time but went with the symptoms. He did give me a sheet of info about IC and list of foods to avoid. I wondered why I couldn't eat lasagna anymore without being in pain! I noticed though as I got older, the IC got worse! Mom thinks it's because I did too many cysto/hydro. Any of you also have had a lot of cysto/hydro done, only to get more pain??

    Leave a comment:


  • Landish
    replied
    I also have been suffering from IC for 9 years and I would be interested in hearing about any new alternative treatment.
    I can't take drugs. A small amount of any chemical substance makes me feel indescribable pain. I have been treated like Guinea pigs. Sometimes I was prescribed for 6 pills a day when just one hurts me a lot. I think this entire chemical makes my bladder worst.
    The hydrodistention makes me feel close to normal but a short period of time ( a week ) and I can’t have general anesthesia every week. I think general anesthesia is very risky, you never know if you will be back.

    Katarina if you are trying something’s different please let me know.

    Leave a comment:


  • Salsa
    replied
    Originally posted by Katarina8349 View Post
    I would discourage everyone from having this procedure done. I have been suffering from IC for 9 years, without it being properly diagnosed. The health problems associated with it have always been troublesome but nothing compared to how they have been since the procedure. I've had more pain and discomfort than ever before, with little respite, since I had it done: nearly 8 months ago!!! I got to the point of actually wanting to sue the doctors for not having talked to me about the possible risk of having my symptoms worsen. If you've had problems for a long time, if antibiotics don't work, if doctors find nothing wrong via non-invasive tests, then just take it for what it is: a set of urogynecological symptoms classified as IC. Doctor's certificate is no better than your own conclusion. Get treatment for it - see if they work. Do not invade a sensitive area with more invasive instruments. You might end up like me, blaspheming the day I had it done. I am seeing a specialist in Rome, who is IC guru. I get alternative treatment for IC because I refuse to take drugs and refuse to be pumped up or probed EVER AGAIN.
    Are you having any luck with alternative treatments? I would be interested in hearing anything that might be helping you some! Thanks!

    Leave a comment:


  • Katarina8349
    replied
    Extremely negative - warning

    I would discourage everyone from having this procedure done. I have been suffering from IC for 9 years, without it being properly diagnosed. The health problems associated with it have always been troublesome but nothing compared to how they have been since the procedure. I've had more pain and discomfort than ever before, with little respite, since I had it done: nearly 8 months ago!!! I got to the point of actually wanting to sue the doctors for not having talked to me about the possible risk of having my symptoms worsen. If you've had problems for a long time, if antibiotics don't work, if doctors find nothing wrong via non-invasive tests, then just take it for what it is: a set of urogynecological symptoms classified as IC. Doctor's certificate is no better than your own conclusion. Get treatment for it - see if they work. Do not invade a sensitive area with more invasive instruments. You might end up like me, blaspheming the day I had it done. I am seeing a specialist in Rome, who is IC guru. I get alternative treatment for IC because I refuse to take drugs and refuse to be pumped up or probed EVER AGAIN.

    Leave a comment:


  • Salsa
    replied
    Serinity I am so with you....it's so frustrating! I have not gone into remission either now for over 3 years and completely understand feeling like you should sleep in the tub It is horrible. I am going to try the Botox I think....sometimes I just wonder how I can go on like this (no, not suicidal! but geez you get to a point where being stuck at home all the time is NO fun) It's so true too that many don't understand. I have friends all the time say, "oh, you started a new medicine and I thought it was all gone?" UGHHHHH

    Leave a comment:


  • serinity
    replied
    ?????negitive

    Beside the fact that i know what the problem is now and that the pictures come in handy every time i find my way to my family docer or to the ER or find myself explaining my condition to family members or friends.I get nothin else out of it! Well there is: Added pain! Oh and even more trips to the bathroom (to the point i feel like i should just sleep in the tub)
    I've never had a remission & it doesnt help with any symtoms. In fact i felt worse both times. The last one doing more damage than the first. They're only helpful for evidence.So unless I feel its been long enough for them to need to check for damage....The answer is.... NO!!!

    Leave a comment:


  • nvl
    replied
    Hydro every 6 months

    I get a hydrodistention every six months to stretch my bladder. I have severe IC with ulcers inside and veins outside. This breaks all the ulcers and veins. It is done under anethesia and causes pain for approx. 1 week. THEN and this is the only time I have very little pain for approx 4 months. And.........we do it all again. I went for one year, one time, and will never do that again. I use this as a treatment, not as a diagnostic tool. Also take the regular meds most ICers take on a daily basis.

    Leave a comment:


  • born2swim
    replied
    Eloise,
    I am so sorry that anesthiologist lied to you. Hopefully you don't get him for this procedure (you can actually request someone if you have a name of someone you like... or you can refuse that one doctor and they will be sure to schedule you with someone else... that's how it works at my hospital anyways...).

    Well, best of luck to you!

    Leave a comment:


  • Eloise
    replied
    I've had many surgeries too and this particular anesthesiologist finally told me (after I told him a number of times that it wasn't mind over matter for me) that he would give me something in my IV for nausea when we got into the operating room. When I got into the OR, he told me that the stuff for the IV was on its way and by that time I was falling asleep. When I woke up and so ill, I knew he had lied to me the whole time. All of the other anesthesiologists have been great. I am definately going to bring it up to my uro when I have my pre-op with him. And I know he will make sure it is taken care of and of course, you always get to talk with the anesthesiologist who always asks if you've had any trouble with anesthesia.

    I'm glad you mentioned that your uro lets gravity take it time filling your bladder with fluid because I am going to bring that up to my uro also.

    Eloise

    Leave a comment:


  • born2swim
    replied
    Yikes! If you knew that your body reacts to anesthesia like that, you should have demanded the anesthiologist give you something or demanded a new anesthiologist. We are the consumer and they are there to provide us a service. No, I'm not saying it was your fault or anything, but I'm just shocked that your doctor refused IV anti-emetics. Some doctors are so stubborn (or think they know everything). Doctors make it a point to ask before surgery to see how people do with anesthesia... so they don't wake up sick or having complications. What a jerk. I would have been livid if I woke up wretching! I've had 5 abdominal surgeries (yeah... sucks, I know) and I make sure they have something for nausea in the IV line before and after surgery. I do get nauseated with general anesthesia, but more so from the breathing tube resting against my soft palate the whole time (I have a major gag reflex). Anyways, sorry you had to go through that. Next time, don't let the doctor push you around because they think they know your body better. They are full of it sometimes! I have met some wonderful anesthiologists and some that have the social skills of a slug. I am in med school and I can already ID those that think they are God.

    Well, again, I hope everything goes well for you. Oh... one other thing... make sure you discuss with your uro about urethral dilation. Some uros still do it, but most feel that it doesn't help IC that much unless there is a physical narrowing of the tube. I've had 4 (I think) hydros and one time they dilated the urethra... that was the time I hurt post-procedure for 2 weeks. Those lidocaine gel pens are a Godsend. So... you might want to check that your uro doesn't dilate unless there is narrowing as well as getting some lidocaine pens. You can get the gel from most pharmacies, but what I was given had a "tip" that you can inject the gel into the urethra. That was wonderful after the procedure (especially the first 24 hours when you are the most sore there).

    I am not on the forum as much as I used to (I have a lot of other stuff going on), so if I don't see you post in May, GOOD LUCK!!! Most say it helps or it does nothing... not that many say it made things worse. Some doctors really stretch the hell out of the bladders. Mine will let gravity pull in the saline and let it stretch that way rather than pushing in fluids. It is a gentle stretch and it seems to be the "magic" touch for my bladder. Ok... I'm rambling now! GOOD LUCK!

    Originally posted by Eloise View Post
    Thank you, again, Alyssa and thank you jlynn81. You have helped me a lot. I will be very happy if I don't have any more discomfort than you two - that is, I know you had discomfort and I have read some of the other posts where the pain went on for days and weeks and I don't want that. I am very sensitive to medications so I suppose that my uro will probably keep me on Tramadal or Vicodin - both of which I can tolorate quite well but I do Tramadal better. And my uro believes in pain meds but also keeps watch at the same time.

    I do become very ill and nauseated with anesthesia so they always have to put something in my IV's. Otherwise I end up so sick and not getting to go home until I'm over the nausea. I had one anesthesiologist who told me it was all mind over matter and wouldn't give me anything in my IV before surgery. I woke up horribly ill and it took threee shots for nausea and vomiting before I could quit wretching. When I told my gyn when he came into the recovery room about the anethesiologist, he hit the ceiling!!

    My hydro isn't until May 6 but I will let everybody know how I do.

    Thanks again,

    Eloise

    Leave a comment:


  • Eloise
    replied
    I wish you well, jlynn81, and may you have a much easier time this time. I hope you do well with the results.

    Eloise

    Leave a comment:


  • jlynn81
    replied
    I go for my second cysto/hydro on April 14th (I switched Drs and the first one didn't take any pictures or document what the bladder looked like after, so I have to get it done again!!!), so I'll try and post how the second one goes. I'm hoping it is not as bad as the first one.

    Leave a comment:

Working...
X