Freaked out.

[shvlnose]

:( Hi Guys! :help:
I was diagnosed with IC a year ago based on symptoms and the results of a PST. I recently moved to a new area and I'm going through all the stuff to try and set up with new doctors (what a pain!) and all of that. Also my husband and I are trying to plan to get pregnant soon. So... I go to see my new Urolgist - mostly to ask about learning to do bladder instills at home so that I can reduce my oral medication in preparation for pregnancy. He (oh, gee what a novel concept!) wants to make sure that he's actually treating what I have and wants me to schedule a cysto w/ hydrodistention - I
assume to actually check for the glom-thingys-I-can't-spell.'

My husband keeps telling me it's better to know for sure what is going on, and for the most part I agree, but I'm totally freaked out about this. I'm scared that I'll be in huge amounts of pain after. That the doctor won't want to give me enough pain meds (I already take Ultram prn for the daily pain), or I'll get a UTI, or I'll just be in agony, or the post op pain will never go away, or.... anything. I'm also scared to death that he won't find the glom-thingys, he'll say I don't have IC (strange thing to be scared of, huh?), and I'll be back to a place where I have doctors telling me it's all in my head and nobody will be willing to help me. And of course there is also a fear that he will confirm the IC - though I've already been living with that as my accepted dx. :loco:

I'm REALLY happy to have a doctor who seems to be taking this seriously (yeah! :woohoo: ), and he seems VERY familiar with the IC community - knows personally, or knows about several of the leaders in the community, many of the doctors who are researchers, that sort of thing. He said if it wasn't IC, he'd give me a referal to a pain specialist who could help me continue to track down whatever is causing my pelvic/bladder pain.

So this all seems like a really good thing, but I'm just so scared. I don't know what to do. I feel like crying. :(

Aly

[SharonA]

:hi:

It is hard to predict who will have problems from the cysto/hydro. Some do, some don't. I was one of the ones who didn't. My doctor gave me a few pain pills. I took one before I left for home after having the procedure because they wouldn't let me leave unless I took it. After that one, I never took another one. I was also given another script for an antibiotic just in case I developed a UTI.

After getting home, I spent the day in bed, resting. It burned a bit when I urinated the first couple of times, but stopped. That evening, I was up watching TV with Hubby and ate a bowl of oatmeal. The next day, I was back to doing the normal stuff.

Sounds like you have found a good doctor. That is a big plus in your favor. Talk with him about your concerns. :) :) :)

[rosesitty]

Aly - you already had a PST test, I'm not certain why he's insisting on a cysto/hydro as well. From what I've been reading, many uros aren't doing that test any more for IC confirmation, even tho some people get relief from it. I was diagnosed purely by symptomology and an in office cysto. Sharon gave you good advice. Talk to him about your concerns. It's your body, if you don't want the test then you don't have to have it. I'd be interested in seeing what the other ladies on the site say about the cysto/hydro for you.

[Sarojini]

Of course, it's your body and if you do not want the test, you should discuss your concerns with the doctor.

As for why he wants the c/h, t's possible that he is one that isn't sure yet about the PST; there are some out there. Some just want to look and see for themselves. Also, I was once told by a uro that if my previous uro's records and my own records were not so complete, he would have wanted another cysto/hydro, but since my records were in complete order he did not bother. So, there are various reasons why docs do what they do... but again, discuss your concerns with him and let him know you aren't sure about the hydro thing.

As for what one is like, I was okay about 24-48 hours after mine, even though I have a fairly nasty case of IC. There was burning and blood when I used the bathroom for about a day, some cramping, and I felt very tired for about 2 days. I was given an antibiotic to take after the procedure and was also given a pain prescription as well. It wasn't nearly as bad as I'd feared. :)

[shvlnose]

It's weird because he seems really knowledgeable about IC, but he said that the PST was not really used any more for dx, which I thought it was starting to be used more :confused: .... basically, he says it might be IC, but he "isn't convinced yet" that that's what it is, so he wants "to take a look."

I had a laparoscopy (to rule out endometriosis) last year and that went OK. I just keep telling myself that it shouldn't be worse than that. I know that the truly hideous complications happen rarely, and most of the time, you're probably just sore and not quite up for the usual amount of activities for a few weeks... so I'll proably be fine. I'm just anxious.

My huband keeps going "why are you upset? this is a good thing!" and it is, but it's hard to make him understand that (at least right now) I'm seeing it as having to walk a rope bridge over a deep chasm to get a million dollars. Yes, it's all to the good in the end, but getting there and back is a bit nerve wracking.

Thank you for the support!
Aly

[Briza]

Aly
I also had a lap before my cysto/hydro to rule out endometriosis. The lap went fine,with minimal recovery time..had it on a Thursday and was back to work on Monday. So I had pretty high hopes that the cysto/hydro I had two months later would go as smoothly. Unfortunately, that wasn't the case; I had complications that put me in the hospital for a week and caused me to miss over a month of work and set me back physically, emotionally, and financially.
Most don't have complications, but they can and do occur. I have to be honest and tell you that there are quite a few women here that I correspond with privately who have had complications, but most of these women don't post about it because they don't want to scare those who are considering this procedure.
I see that you are already on medications to treat your IC. Are they working and have they given you any relief?
I would question a doctor's insistence on having an invasive surgical procedure if you have already been diagnosed through the PST and have a treatment plan in place. I'm not questioning the integrity of your doctor, but surgical procedures are money-makers. If you have already been diagnosed, and your treatment plan is in place, why risk it?
Please understand that this is the experience that I had. I wish you the best and support the decision that you make.

[shvlnose]

I have been on Elmiron for almost a year now and it does seem to have helped somewhat. Not hugely, but enough that when I look at the amount of pain meds that I take, it has dropped (in general) over the year.

Part of the problem is that I've been having a flare for about 4 weeks now - not a huge amount of pain but urgency is way up - and that concerns me, as well as the fact that my husband and I want to start planning to get pregnant.

I made the appointment with him because he's the only Urologist in the area that would even discuss the thought of teaching me how to do bladder instillations at home. I was hoping to be able to do them to help get off of most meds while trying to conceive and to help with any flares that occur while pregnant. The other doctors I contacted basically said "nope. we don't do that."

So before he agrees to teach me to do the bladder instills, he wants to "make sure" that what I have is IC. At least that's his reasoning. I think it probably is, but in looking at one of the books (you don't have to live with cystitis - I think) there ARE other things it could be (like nerve/back problems) so I suppose it's good to at least try and find out.

Ack! It just makes me so nervous. I'm lucky enough right now to be double covered insurance wise - we have insurance through both my work and my husbands, so at least the out of pocket cost shouldn't be too bad. Of course that says nothing for it still being a money maker for the doctor - he gets paid either way.

So... I guess I'll just have to keep thinking about it and doing my research. I'm a BIG believer in staying informed! If you are going to make me take a med, or suggest a particular therapy, you darn well better be able to tell me WHY you think it's important and will be helpful!

Thanks again for the information guys! I really appreciate it. Keep it coming!
Aly

[angelgirl]

shvlnose

Im going through exactly what you are. Wondering whether or not I should have a hydro done. Im probably not going to at this time. I had terrible experience with the instills and am afraid to do the hydro.

Someone mentioned ruling out bladder cancer by hydro. I've suffered this for 10 years. If I had bladder cancer wouldn't it have gone to other places in my body by now? Im thinking that the hydro is just a protocol procedure because they don't know what else to do for you. I know some said they get relief and then just as many said they didn't. So, Im thinking why bother.

Right now I am on Elmiron (which when officially diagnosed about 2or 3 years back as soon as she said hair loss I said no way. I thought I was happy enough to know what the name of my problem was) and I am taking cystoprotek. I will give it a full year to see if I get any relief. I just want them to give me pain meds that work for me for days when I want to go somewhere or need to be somewhere without pain. Like, a vacation!!! What works for me is percocet(sp?) so hopefully they will give me them without a big hoopla about it.

Let me know how you make 0ut!

[Briza]

A bladder biopsy can be performed while under sedation during a cystoscopy. This was the original plan that my urologist and I decided on because I didn't really want the hydrodistention. She decided once she was in there looking around with the camera that the hydrodistention was necessary. :mad:
I didn't have any specific pain from the biopsy. But the hydro just about killed me.
So you can have a cystoscopy and biopsy and some bladder exploration and photos minus the hydro.

[nabroeker]

Hello,
I just had a cysto/with hydrodistention last week. I had alot of pain while urinating afterwards, but was prescribed Pyridium for that. It helped alot! I had muscle soreness in the abdomen for about a week, but feel great now. The procedure did not help my IC, and now I am starting DMSO treatments. Good luck and dont be freaked out, it is one of the more easier things to go through!

[shvlnose]

:( Ok. so it looks like I have my hydrodistention scheduled for April 3rd - at noon. Why can they do it at a normal early morning hour so I can just get it over with? Ugh. :(

The 3rd is a Monday and I'm wondering how much time to request off from work. Obviously Monday and Tuesday. Should I take the whole week? Might I be able to work 1/2 days? I'm lucky in that I telecommute so it's not like I'll have to get dressed and presentable in order to be able to work. Can stay in sweats and look like crap if I feel like it. ;) Just trying to get a general feel for how long I will actually be OUT out. I know I probably wont be 100% for a couple of weeks at the very least.

Just trying to get a feel for how long it has taken people to recover from this procedure (barring any complictions). I'm still really nervous, but I suppose more information is better. As I understand it at this point... hydrodistention resulting in NO glomerulations means no IC, hydrodistention WITH glomerulations means something is up, but not necessarily IC. Is that right?

And, if for some weird reason it turns out not to be IC, the urologist has already agreed to refer me to a "good pain specialist here locally that can help [me] track down the cause of [my] pain." I'm just really not excited about the possibility of being back on the roller coaster of "why am I in pain? What is wrong with me? Does it have a NAME? etc..."

Let me know if you have any advise or thoughts on how long plan on recovering.

Thanks guys!
Aly

[nabroeker]

Hi Aly,

I had my hydro done on a Thursday and went back to work on Tuesday of the next week. I felt fine, had a little soreness like pulled muscles but was okay to work and I am a teacher so I was chasing kids around all day. I guess it is different for everyone though, so I would just judge on how well you recover from things like these.
In a hydro they are looking for pinpoint hemmorages in your bladder while it is expanded. If they see these, most likley you have IC. They will also be looking for Hunners Ulcers. I would read up on this in the Patient Handbook here on the network. Also, the IC survival guide by Dr. Moldwin is a great book! It is well worth your money if you have or think you have IC.

[marsi4]

If it is IC, I think your doctor should refer you to a pain clinic as well to have your pain reduced with pain meds if you need to. If your pain is not very intense you can take over the counter meds to treat it, and try instills as well. If you want to start trying to conceive though you can't be taking pain meds. I only had vaginal burning from hydro distention. It didn't cause me any additional pelvic pain tahn what I had before the procedure. You should be okay to go back to work after a few days.



Marsi4

[kadi]

Hi there,
I had mine done on a Wednesday, and was back to my pre-op level of IC by Friday. They gave me pain meds during the procedure & Darvocet to take home with me. I only needed that for a day.

There has been some recent research done that overactive bladder may also react to the potassium test (can't remember where I read it, but it was on either this site or the ICA site), so the cysto/hydro isn't an unreasonable thing to do.

One thing you might do, if you have frequency, is request a potty chair if you have to wait in the pre-op bed for a long time. That would have made my pre-op wait so much more tolerable, since I had to go about every 15 minutes & the nurses insisted on having someone walk me to the bathroom, so I kept having to wait for one of them to get to me...

Wishing you better days soon!

[ICNDonna]

I am one who is helped by hydrodistention. I have read that about 50% of ICers benefit. I was diagnosed in 1975 and just had my 40th hydro on February 23. I'm feeling much better than before the hydro.

If it's not a problem, I suggest you plan to take the week off. That way you can just sit back and give yourself some time to heal.

I highly recommend the book, "The Interstitial Cystitis Survival Guide," by Dr. Robert Moldwin. It's an excellent reference book, especially for new ICers. (The author of "You don't have to live with cystitis" had her medical license suspended. She had some good things to say, but I do look for verification from other sources.)

Sending healing thoughts,
Donna

[shvlnose]

Hello Everyone!
So I had it done yesterday and the procedure went OK. The doctor was able to confirm that I DO have Interstitial Cystitis - which sort of sucks, but it's really good to have further confirmation that this was not all in my head. I'm sure you can all relate to that!

I don't have a lot of details yet as the doctor really just spoke with my husband while I was in recovery. I'm a little sore and feel a bit 'off', but otherwise I'm doing fine. I'll probably just take the rest of today to heal/sleep it off and should be back to work tomorrow.

The doctor did say that he saw the glomerulations (sp?) and that I had reduced bladder capacity, but that's all my husband can remember specifically. I'm really eager to talk to him and find out how much, how bad, where, what did it look like, did he take picutres, etc... and most of all, does he have any further treatment ideas. This is all pretty much because I want to get pregnant and I'm trying to find ways to reduce my number of meds and not be in pain for 9 months straight.

Well... we'll see how it goes. Today I'm just going to rest and pamper myself. Thank you all for your support/well wishes/information about your experiences. It really helps to know that I'm not alone and other people are dealing with this and still leading their lives. I appreciate all of you. :grouphug:

Thanks again!
Aly