A desperate cry for help, ideas, and opinions!

[Jax0927]

Hello everyone and anyone interested in hearing my story! My name is Jackie and i just turned 23 this week. I was diagnosed with interstitial cystitis in march of 2009. It's been a huge part of my life and made me realize things can't alway be perfect. On my birthday on Monday this week I had a terrible flare up that kept me home in bed until I could get in to see my urologist on wednesday. After seeing him
we decided to try the cystoscopy with hydrodistention procedure on Thursday. I came out having a lot of pain as to be expected but overall was comfortable. On Saturday night I noticed it was becoming nearly impossible for me to urinate on my own. Come early Sunday morning I was unable to urinate on my own. I contacted my urologist who had stated he has never heard of that happening after the procedure and that this could be life long. He kept insisting he knew several 23 year olds who had to use self-catheterization and that it'd be ok... However this answer is unacceptable for me. I work At a family practice office as a receptionist and am very close to the doctor I work with and she also agrees she's never heard of this and his answers are unacceptable. The only good that came out of it is that now my urologist referred me to a hospital that includes urodynamics testing. The only problem is my appointment isn't until march 11, which seems too far away without me being able to urinate on my own and having so much pain and trouble. I went to speak to my urologist today to get answers as to why I am still having to self-cath and unable to urinate on my own... I basically got shoved out the door with 3 more prescriptions without any answers.... I know feel like he is to the point where he just adds on prescriptions as a way of keeping me quiet until march 11. Part of me is concerned that something was damaged after the cystoscopy with hydrodistention, but I am uncertain... I am open to any input anyone is able to give me. I'm currently on and have been on these 3. Standard meds for the past year. Hydroxyzine, amitriptyline and elmiron. Anyone who has ever heard of these problems after the procedure please feel free to comment. Also any comments greatly appreciated! Thanks--- Jackie

[ICNDonna]

Usually the total retention that can happen after a hydrodistention is not permanent. There are some medications that might help, but I also think it's a good idea to see a different urologist to be sure there isn't something that can be done to help.

Warm hugs,
Donna

[SharonA]

I am going to 2nd Donna's suggestion about getting a another opinion. (((Hugs)))

[mary124]

This happens to me a lot after hydros. I'll be fine one moment/day and the next I'm not able to go. The doctor doesn't want me to cath due to risk of infections, etc. so of course, he pulls out the medication pad. Sometimes I do think that thats all or can do. I don't know. But I would go to another doctor to see what they say.

[Katrina]

:welcome: to the ICN!
Your doctor is wrong and the others are correct. This is a possible reaction to the test because the extra stress to your bladder can make your muscles react by tightening up...they went through the procedure too and this may be in response to their own stress from the test or both. Anyway, I have heard of it before and I suspect you will get better....do what you can to relax and get a muscle relaxant if you can.

If you are uncomfortable with your doctor I suggest looking around. It can't hurt to be window shopping and see what is out there.
Although self cathing is not as bad as you may think I doubt your in for a life long trip of that being your only option. I suspect the retention to be from muscle stress and a qualified doctor should be able to help with that. I do believe there are things that could help so I wouldn't be thrilled with a doctor that has never heard of this and has no idea what to do...I suspect Pelvic Floor Dysfunction (a common part of IC) to be a factor here and that is a treatable condition and there is a lot of ways to help.
http://www.ic-network.com/forum/showthread.php?t=56872

I like the meds your on but there is nothing there that is directly a muscle relaxant and that is an area that may need extra focus for alittle wile.

:grouphug: Very glad you found us and may this be a step in getting you on the path of relief you deserve!:grouphug:

[Jax0927]

also when I left the doctors he had me on oxybutyine but said to stop taking that and to take vesicare and prosed ds... I'm feeling sooo uneasy about takin these two cuz he didn't feel very confident when prescribing them... Will either actually help with the problems I am having or does anyone recommend taking or not taking them... Thanks

[nyeema]

I can relate to your experience. There is so much docs don't know about our disease and they act like it would kill them if they had to admit it.

i agree with what everyone has said here, but i would also consult a lawyer. There is a good reason docs hate lawyers (i work with docs and hear their hatred for lawyers all the time). Unfortunately, the law helps keep docs in check. It's a shame but i bet if you press charges your doc will be more sensitive or send his IC patients to a more competent physician.

Do consult with a lawyer. This doctor has changed your life and you should be compensated.
In the Spirit of Love and Healing,
Nyeema

[gatorgal]

I had a lot of difficulty urinating after my cystoscopy under hydro. the nurses had to give me pyridium and i had to squat over a measuring hat and strain in order to urinate ( i would not allowed to b discharged unless i peed). your doctors wrong, katrina's right, that test definitely tightened my muscles, but i recovered after a day or two with more pyridium and muscle relaxants.

[gatorgal]

I had a lot of difficulty urinating after my cystoscopy under hydro. the nurses had to give me pyridium and i had to squat over a measuring hatand strain in order to urinate ( i would not allowed to be discharged unless i peed). your doctors wrong, katrina's right, that test definitely tightened my muscles, but i recovered after a day or two with more pyridium and muscle relaxants.

by the way elavil and hydroxyzine are both anticholinrgics which can cause urinary retention,so if you are currently having retention from your procedure and taking these i would speak with another doctor for a second opinion. i was also on hydroxazine at the time of my cystoscopy and had to take a 5 day breakfrom it after i got retention.

[Smokey]

it could be that the urologist stretched your bladder too much, i know for a fact once its starts to bleed they need to stop. ask them how much your bladder was stretched to?

[Smokey]

sorry i was to meant also say that your bladder could have gone into shock if it was stretched to much. i had a ic friend whos bladder was stretched to 1.2
litres his bladder went into shock and stopped working and had to be cathertered.

[Sally939]

Ok first of all, I would seek out another doctor for a few reasons. First reason, you need a doctor that will listen to you talk and make you feel like they care even if all they can do is give you more meds. Second, it seems strange to me that he had to refer you to a hospital for urodynamics. Where I live most of the Urologist (and some GYNs) do urodynamics in the office. Third, to find a doc that knows more about hydro cystos. Fourth, I think he jumped to the worst case by saying this could be lifelong and caused you unneeded stress (which can't be helping your bladder).

After mine I did not go into complete retention but had a really hard time going. Over time this did get better, but it took time so try to be patient (I know and understand that will be hard). Do try to relax because it sounds like it is not all too uncommon to have this side effect. From the above comments it sounds like it will get better.

When you see another doc I would ask about the ditropan or vesicare. I take ditropan and need it for my symptoms but alot of IC patients have a really hard time with these type of meds causing retention of some sort. I had to really play with my meds to get the "right" ditropan strength that stopped the pain but that did not cause me to have to push to pee (pushing is bad on the pelvic floor muscles).

[Katrina]

Both meds are antisapsmodics and can make matters worse. You need a muscle relaxant not an antispasmodic. I suspect both to be bad at this time. Sorry! :grouphug: Time, hot baths, diaphramic breathing, relaxing effort.
:grouphug:

[Shaelyn]

I'm so sorry to hear you are going through this! My doctor wanted to do hydrodistention, but I told her no. I am sure glad I didn't do this!
I am sure you were checked for this, but just in case have you been checked for a urinary tract infection? I have two friends that this happened to after a cysto, so I just thought I would ask. Sometimes the equipment doesn't get cleaned as well as it should. One of the two friends mentioned had a UTI for an entire year if you can believe that? For some reason the initial urine test did not show a uti. Meanwhile, a couple of cystoscopies, urodynamics, catherization, CT Scan, and Ultrasound later, that was all that was the problem. Now he has intermitent problems with retention, nocturia, and frequency.
Hopefully you are feeling better!!!

PS. I would certainly get another urologist. As you can see with my friend, they aren't always the "experts" one would expect.

[StephN]

This exact same experience happened to me when I had the the hydro distention. I would never never have another one! I went into major rentention, extreme pain, eventually was sent home with a cath and was in tears as I thought this was my "new way of life".

It is only recently (5 months) after trying many meds and alternate therapy that I have started having a little relief. This gives me hope and that is what you really need to have when faced with IC/PFD.

I found pt has been helping although I have to say I started in October 09 and am just feeling some affects of it now. So it takes a while, as well I started acunpunture. This was a great help for lower back pain and helping the PF area. From my own research and figuring out my body. I realized that after all the retention issues I believe I had develped PFD from the pushing, and disfunctional voiding. So really the PFD I think was giving me more issues that the actual IC. I started on a muscle relaxant (something I should have done way sooner) and have only been on it for two weeks. This also has really helped me with my urine flow. It's still not consistent but definitely getting better. I have at least one bath, if not two a day. Again these are all things for PFD because I do believe this becomes the problem after major retention issues. I am still in discomfort but it is slowly getting a little better. It is a long road and everything seems to take so much time but if I were you I would try the muscle relaxant asap as well as baths and perhpas when you are feeling up to it start up with some PT. Also keeping in mind the "regular" things to do with IC, eating from the diet, relaxing, etc.
Hoping you feel better.
Stephanie

[aliciacaldwell]

im sorry to hear about your problem after your hydro, but also it is not uncommon, i am also 23 and have been diagnosed for almost 6 years now, and have had 4 hydros and doing my 5th on friday, i have always come out of it haveing a hard time with urinating and have to cath myself quite often, the fact your doc says it is uncommon is very wrong alot of us do go through that and i agree with everyone else you need a new doc. as for ditropan i have also used that and it makes it worse, my gyn had me on that for almost a year and finally my uro took me off for it caused more dysfunction then i had before, i am on the same three meds as you but also they just put me on cimetidine it does help a little bit i hope all goes well for you, just try and keep your head up i know it is hard to do especially at our age of only 23 but eventually i believe it will get better you are in the right place for lots of support though