Getting my second hydro

[born2swim]

Well my uro is going to do another hydro soon. I had one back in August and that seemed to help a bit. I was able to exercise again, but then I got cocky and tried running (and that aggrivated things back to where they were). So, we are going to try another hydro and pray that it helps again. It was pretty painful in the recovery room and I had retention for 2 days after, but overall, it was worth it.

Any hydro veterans have words of advice? Is the second one as helpful as the first? What helps the pain right after the procedure (besides pain meds and pyridium)?

[leelee88]

No words of advice, but I wanted to send you some support.
I know Donna gets alot of relief from these and I hope it works for you to.
(((((hugs))))))

[ICNDonna]

I'll keep my fingers crossed for you and hope it helps again. The only advice I can think of is to be sure your doctor orders some pain meds for the first few days --- and take it easy and give yourself time to recover.

Warm healing thoughts,
Donna

[HGC]

I have had 11 hydros in the past 15 years and I am always helped by them. Like Donna said, make sure you have pain meds and rest. I usually take the week off from work to be on the safe side. Good luck and I hope this hydro helps as much as your first.

[lisabar36]

Hi, I have had hydro's, I would just make sure they give you something for pain and spasms and rest. Good luck, I hope it helps you. :)

[Claredale]

:grouphug::flower:

Gets lots of rest!

Tracey

[SharonA]

I hope the second one helps you. :):):)

[mary124]

Just adding my 2 cents worth here, I have had about 10 of them in the last 5 or 6 years, they are very helpful and worthwhile to me. All I can say is rest and take it easy for the first day or 2. Make sure you have something for pain, as you might need it for the first couple of days.

[born2swim]

Thanks everyone! I remember how painful the first one was (like the worst menstural cramp I have ever had)... but it only lasted the first 2 days. I was on demerol, but that only contributed to the retention, so hopefully my uro has a different med of choice since I am allergic to codeine, hydrocodone, and morphine.

I will probably be getting it done at the end of this month... or maybe sooner depending on my uro's schedule and my class schedule.

[RAS6]

Alyssa,
Do you have as surgery date yet? I am having my second Hydro on Feb. 1st.
I had little relief with my first, but am basically out of options and my symptoms are much worse than when I was first diagnosed. I see an IC specialist now and he has been great the past year. If this doesn't work I am going to try to get into the interstim trial at the teaching hospital my doctor works at.

Anyways, gotta go finish dinner!!

Let me know what you find out!!
Hope you are well beyond having to have a second hydro....

[born2swim]

Rachel,
I have my second hydro on the 29th. I did get some improvement with the first one. Could I run again, NO! That is what got me back to where I started (I thought there was enough of an improvement to run again... wrong!). So, I am trying the hydro and I won't try running again. I did try the Interstim and that did not work out at all for me. I wish the best of luck to you with your hydro (and possible Interstim trial). If the hydro doesn't work, I might consider botox to the bladder. I will cross that bridge if we get to it.

Since my urethra gives me so much trouble, my uro will dilate the urethra as well as distend my bladder. I have a feeling that I am going to HURT next week! The first hydro hurt for the first 2 days (trouble peeing too), but then after a week, I was back to where I was... by the end of the second week, I was feeling better. Not a cure, but better. So I pray this helps just as much if not more!

[muxerr012]

born2swim or anyone else who has this answer:

You seem pretty experienced in testing and IC procedures. I know this will sound dumb but I am new to all the IC testing except for the cystoscopy I had last July which defintely showed signs of IC & possible hunners ulcers.

I have my first CMG urodynamcis tests this week. There are 4 tests taking an hour and will be done in the URO office. One in particular scares me. Its:

CMG: A catheter is inserted into both the bladder and rectum and the patient has her bladder slowly filled with sterile water to assess bladder spasms and the pressure at which she leaks urine. A voiding study is then done with both catheters still in place.

Is this a normal test and how painful will it be? I'm pretty embarrassed to even ask. Thank you to anyone who may reply to my question.

[ICNDonna]

Gina, the test isn't horrible. If you can manage to relax it's much easier. I hope it goes smoothly for you.

:grouphug:
Donna

[muxerr012]

Oh thank you! I think I was getting this test confused with the hydros you all talk about and I was getting myself all worked up for nothing. Relief....Thank you again.

[born2swim]

Gina...

Ok, so the urodynamics study. To be honest, was the worst study I had to have done. It is torture, but like Donna said, you need to relax! I was allowed to take a pain killer before hand, so I took an Ultram. The results could be a little off, but they didn't think it would affect my case that much (as you can see in my signature, my urodynamics was very abnormal even with a pain killer). The nurse that did mine was very "gentle" and was extremely caring. She explained everything well and kept me pretty relaxed. The rectum probe was weird, but not painful. They used a pediatric cath for me because having a cath is very painful. Setting up the test took longer than the actual test. They had me cough to assess leaks. They filled up the bladder and I had to say when I got my first "go signal". Then they let me empty. Then they filled it up again, asked the same question and had me hold it for as long as I could. Then they let me empty. It turns out that my bladder fills abnormally. I get the "gotta go" signal at 40-50cc's and from there the pressure is so intense. My bladder had elasticiity and my pelvic floor muscles were tightening down so hard against my filling bladder, that is what causes so much pressure. Then when they said I could release, my bladder emptied perfectly. There was no spasms or pelvic floor problems. My bladder emptied completely, but then as it is empty (when the pressure lets up and the bladder relaxes normally), my bladder had this massive contraction. It was like a 'charlie-horse' and the pressure reading was off the chart. The nurse even said, "woah".

So, this test gave A TON of information and I put it off for so long, but I wish I didn't. It really helpd us understand what is going wrong with my bladder. Just try to relax. If you are worried about pain, ask if you can take a pain killer. I was allowed, but I don't know if everyone can.

I hope this helped! Good luck with your tests!

[muxerr012]

Alyssa,

Thank you very much for taking such time and care in answering my questions so thoroughly. I really appreciate all of the information. While it sounds painful, and I must say humiliating, I'm glad you reinforced the importance of having this done. My info sheet from the doctor did say it was the most important test I would have done, so you're right on the money. I will insist on the pediatric cath as I did with my 1st instill last week-I can't imagine them using anything bigger on me! I'll ask about a pain med although the only thing I have is Lyrica for my fibro and I know it won't help with that type of uro pain. Maybe they can give me something.

Thank you again very much. I hope you're doing well :)

[Berkshire Road]

Alyssa, I'll try to get a real email out to you before the 29th, but you know how much I've been hoping that this will finally help you. My world kind of fell apart for a week or so, but you know I'm always thinking of you.

[born2swim]

Alyssa, I'll try to get a real email out to you before the 29th, but you know how much I've been hoping that this will finally help you. My world kind of fell apart for a week or so, but you know I'm always thinking of you.

Thanks Carolyn! I'm sorry to hear you are going through a tough time. I hope things are better now!

I am nervous because the first hydro hurt... and this time they are also going to dilate my urethra. So... hopefully it is not too painful. I also have an exam a week from today (neuro, neuroanatomy, gross/histo lab and behavioral medicine). I am nervous that the hydro will knock out a few days of crucial studying time. I hope that it doesn't!

[RAS6]

Alyssa, how did the Hydro go? Mine went well. I am feeling back to "normal" now which isn't great, however I am only getting up once or twice at night and that is a miracle in itself!! Hopefuly it will last. My Doctor said to not judge the results just yet (will be a week tomorrow) He said he wants to wait a month before seeing me to determine if I have lasting relief. I will say EVERYTHING seemed better this time, they medicated me better after surgery, recovery was smoother there, I was able to void right away, I only bled for two days. So I am hoping this is all a good sign.
I wish you lots fo luck and a swift recovery!!!
I am sorry you can't run anymore. I can't really exercise at all and I miss Pilates terribly!!
Anyways, get in touch and let us know how you are doing!

[born2swim]

Hey! My second hydro was much better too! I could pee right after, they could stretch my bladder better/farther this time, I only bled for 2 days as well, and the pain was not too bad. No retention was a huge plus! My uro didn't give me demerol (which is known for retention). My old uro gave that to me post-op and I think that played a huge factor in not having retention this time! I wouldn't say I feel much of an improvement yet. The first time it took about 2 weeks to tell. I also tried to add Cystoprotek after the hydro and that really aggrivated things, so I'm trying to calm down from that. I CANNOT do supplements!

I can't tell you how much I miss running. I was talking about it with my friends tonight and it really made me depressed. I am going to see an exercise physiologist next week (hopefully) and maybe he will have some exercise ideas that I can try! I hope so! I don't know if I will ever run again, but any activity at this time would be a blessing!

Well I hope your improvement lasts and I hope I do get an improvement! My uro took pictures this time (previous one didn't) and you could see the abnormal vascularization and bleeding. No hunner's ulcers, but bleeding was all over. He said all those things are hallmarks for IC, and add that to a horribly strong positive KCl test and a very abnormal urodynamics... I have IC without a doubt. Oh well. My uro did suggest trying DMSO, and I am afraid to try that!

[RAS6]

Wow, I am so glad you didn't have retention this time and your capacity was larger. I didn't retain this time either and that was a HUGE relief.And yes, certain OAB meds and Demerol too can cause retention (found that out the hard way with both!!)
I am discouraged today, feeling HORRIBLE! The pain was bad and I had to get the cane out again to walk around running all the errands I had to do today. I know again this doesn't mean the Hydro won't help, but I am impatient!! Unfortunately this Hydro did show my IC is progressing. I have a lower capacity and several small areas of inflammation which I never had before but he said the aren't feep enough to be "true" HUnner's Ulcers (at least I won't have to prove to docs I have IC even though I have a "healthy" bladder anymore :P)
But I am just going to have to take it as it comes, right?
Sorry Interstim didn't help you; that is my next big step this summer if needed, so I'll be asking lots of ?'s !! :)
Anyways, hope you continue to feel good and can find exercise that doesn't aggrivate your IC. Maybe a treadmill (WALKNING ON IT!!) or swimming if that doesn't aggrivate you down there. I could handle VERY simple yoga, but have stopped that for now b/c I have gotten so bad these past 2 months.
Let me know how things are going. I am always here if you need to talk and I love our chats!! :)