Frightened: Cystoscopy & Bladder Biopsies

[Laurie248]

Hi all:

Well, a second urologist confirmed it -- I need to have a cystoscopy done under sedation with bladder biopsies. I've been in pain for almost a year now (between urinary tract infections, pain without bacteria culturing in the bladder/urethra/etc.) and have had no relief.

I am TERRIFIED of this procedure. I called my uro today to set it up at the hospital. What can anyone/everyone tell me about it? First of all, I'm emetophobic - *seriously* - as in, petrified of nausea and vomiting. Is there anything about this procedure (including the anesthesia) that runs the risk of that? Also, how painful is this? I've been in constant pain for a year now, but I'm not too keen on making it WORSE.

Anything and all information you could give me would be helpful. And be honest. I am literally beside myself with fear.

Laurie
Laurie248@aol.com

[Betsie]

Okay, I as well as most of us here have had it. It is a minor though fully sedating procedure. It was very uncomfortable for me as I had 3 others procedures done as well. Alone, I think it is relatively simple.

I know you are nervous, but the anxiety alone is far worse than the procedure...its very difficult to get Drs to dx us, so maybe if you think of this as a positive step forward, it will help you, also a good talk with your Dr and the anesthesiologist will be very helpful and for me they always give me anti nausea meds directly into my IV prior to surgery...I have never had a problem. I am a serious reflux patient, so I think I would easily have trouble.

I also found and was thanked profusely, that if I typed up a sheet to hand the people asking a million questions, it helped a great deal. Each Dr/nurse asks you the same things, to be sure of all the details.

I would make a page with complete name, date of birth, primary dr and phone #, dr for surgery as well and all meds taken, any prior surgeries, etc. I have been thanked many times as it makes it not only easy for them to refer to, but saves you a lot of questions. A few copies can go into charts as needed. Also be sure to list allergies to any meds. Even though you probably will be asked this prior, it is repeated pre-op.

You will be fine and glad you did it. Don't worry yourself sick, perhaps your Dr will give you something to take the night prior for anxiety and will most likely get something going asap preop...so its easy. :) Hope this helped a little.

[Laurie248]

Betsie:

Thanks, your message helped calm me a little.

So I suppose I should mention to someone prior to all of this that I have a serious nausea/vomitting phobia and maybe they can give me the anti-nausea meds. A few other questions:

1. How long does the procedure take?
2. Can you drive yourself there and home, or do you need someone to assist?
3. Pain afterwards? I'm *already* in pretty bad lower abdominal pain, burning with urination, etc. -- what happens after the procedure? Is going to the bathroom impossibly painful? Burning? Abdominal pain, etc.? What can you tell me.

Again, thank you. Part of me is hopeful that they will find SOMETHING (which isn't too terrible) and move me a little bit towards getting some relief.

Hope to hear from you,
Laurie

[rhea]

Laurie-any time you have general anesthesia they will not let you drive as well you shouldn't. You will be pretty out of it for most of the date. As for pain afterwards I think that all depends on the person. I think you should plan on being uncomfortable for about 48 hours afterwards, but hopefully they will give you some meds to help with that. Like Betsie said, the best thing to do about your phobia is talk with the anesthesiologist. She/he will be understanding and will give you something to help prevent it and maybe give you some Versed to calm you down...Good luck and I hope all goes well.

[Laurie248]

Uh-oh. From what I'm reading, this procedure uses general anesthesia. Is that true? I'm reading about everyone who gets nauseous from this - ack!!!!!
Is there something else I can request be used for this procedure?

Worried,
Laurie

[ICLori]

Most of us that have this procedure have it done under spinal anesthesia with IV sedation (Versed). Piece of cake.

I had this done and was perfectly comfortable during the procedure. The hardest part was them putting the IV in, LOL.

It did take awhile for the spinal to wear off so the feeling returned and I could walk, and that was kind of boring.

I didn't throw up at all. I always get sick using general anesthesia but spinal anesthesia with IV sedation never makes me nauseous at all.

It burned a little bit the first few times I urinated, kind of like when you have a bad UTI and it burns, but nothing worse than that. The first time, when they did the biopsies, they didn't give me any pain pills except pyridium (that stuff that turns your pee orange) and actually I didn't even feel I needed that so I didn't take it.

The second time they did this for me, they gave me some Percocet and I didn't need it for the procedure but needed it instead for just my IC symptoms in general because they'd gotten pretty bad by then.

At least for me the procedure was a breeze. Slightly increased discomfort for a couple three days, no big deal. And maybe that was my imagination. And then I went into a remission (hurrah!) where I felt completely symptom free for a couple of weeks. That was a nice thing!

Some people get remissions that last for months after a cystoscopy/hydrodistention. So it's often used for therapeutic reasons.

Because you will get IV sedation and spinal or else general anesthesia, you can not drive yourself home, you must have someone drive you. You should plan on pretty much spending the whole day at the hospital or at home, you won't be going back to work after the procedure. Maybe take the next couple of days off, too, although you might feel just fine and not need the days off.

HTHS
Blessings, Lori

[vm]

I have gotten nauseous from general anesthesia before. Now I always tell the anesthesiologist prior to and they give me anti-nausea meds, as Betsie said. When I had my cysto w/ hydro and asked for the anti-nausea meds I had absolutely NO nausea afterwards. Tell the anesthesiologist how scared you are of that and they are usually very eager to help. I have found that anesthesiologists, as a rule, are almost always very compassionate and eager to make you comfortable.

I had my mom drive me to the hospital and back for mine. I gave her a list of questions to ask the doctor after I came out of surgery as I knew I would probably be out of it. That was good b/c I was out of it when I saw him and then I didn't see him again when I was coming to my senses. :lmao:

I was TERRIFIED of getting general anesthesia, but I did a lot of praying and talking to people and I ended up in a place of peace in the couple of days leading up to the procedure. I hope this happens for you, too.

It was not nearly as bad as I thought it would be. I had requested pain meds for a few days afterwards and that helped greatly. I would absolutely do it (cysto w/ hydro) again if I ever needed to. :)

[Laurie248]

Thank you everyone - you guys are wonderful.

It sounds like there's some small chance I actually feel BETTER after all this - that's a nice possibility. That, and maybe getting some answers about what's wrong with me.

Sounds like the spinal anesthesia with IV sedation is the way to go.
Question: are you *awake* during that? Or asleep?

And I'll definitely mention needing some sort of anti-nausea stuff (it's amazing how averse to nausea/vomitting I am (some people have a fear of flying? my fear of these things, is *that* bad).

I appreciate all of your help,
Laurie

[IC SARAH-CPP]

From what I have read and heard, most people actually have this done with general anesthesia, not spinal. My uro told me that he would not do it with spinal, but with general. I have been put under several times and never got sick, but I have never been under for more than 2 hours. I think that makes a difference, how long you are under. I had a regular cysto done, in office, and my bladder hurt BAD afterwards for about a week, so i am guessing my cysto w/hydro will be really bad. I get mine done on Feb. 10, so I am nervous too.
I know it is stupid, but the part I am the most nervous about, is that they will tell me they didn't find anything and will be back at square one. My uro told me he doesn't think that will happen, but I am still scared!!
Good Luck with your hydro. If you really are that nervous, you should ask the doc for a valium to take an hour before the procedure. I know others have done that.
Love Sarah

[Laurie248]

Uh-oh.

If I don't have a non-nauseating option, this procedure just isn't going to happen for me. :( I'm that afraid. I'm hoping spinal is an option. :(

I am scheduled for February 23rd. Hope to find out some more promising information before then...

Hang in there,
Laurie

[ICLori]

I hope spinal is an option for you too. There is a thread on this part of the message boards, if you want to go look at it, that says "epidural versus general" and it's about this very subject in fact.

I've always been given spinal for this. Perhaps your doctor will give you a choice. I much prefer spinal. Because I hate the nausea that I got with the general that I had for an endometriosis operation. Even though I told them about the nausea and they gave me massive anti-nausea drugs, I still ended up puking all day from the general anesthesia. Hated it, hated it.

I was sleeping for one of my hydrodistentions and awake for the second one. It depends on how much versed they give you. If you want to be awake for it so you can see your bladder on the screen, go ahead and ask them for a light dose.

Blessings, Lori

[ICLori]

P.S. I was going to say, the anesthesiologists that did mine, told me that I had a choice between general and spinal, but that they vastly preferred spinal for this because there were many fewer risks with a spinal than a general. With a general, they have to intubate you, which means you have a risk of choking to death, injury to the airways, etc. General is much much much much much (to the hundredth power) riskier than spinal anesthesia.

Blessings, Lori

[Laurie248]

Lori:

ACK. Forget the general anesthesia. If there is a risk of nausea from it, trust me, I'll get nauseous. If there's a risk of vomiting, trust me, I'll vomit. I'm going to try to steer clear of this at all costs.

Now, this procedure isn't possible to be done under LOCAL anesthesia? Some sort of...numbing of the area?

Sigh. I'm so scared. I hope this isn't as awful as I'm making it out to be.

I'm sitting here actually with my lower abdomen in pain - after finishing a cup of green tea. Does IC feel worse with a full bladder???? I'm really starting to think IC may be what's wrong with me. :(

Laurie

[codyryonwoodward]

Laurie I have had 2 hydro's done. Both of mine where done with general anesthesia. My preferred option. The last time I had it done at the hospital I had the option of general anesthesia or the epidural sedation the first time I didnt. I chose the general b/c when I had my son by C-section the epidural went into the wrong place so basically I was paralized from the neck done for a short time :dizzy: . I then had to lay flat on my back for 24 hours. I have scolosis pretty bad in my lower back so the anesthesia guy hit the wrong place. So for that reason I am scared of those. Tell the anesthesialogist that you get nauseous easily alot of the time they can give you medicine after the procedure to help with that and maybe keep you from vomitting. Some people I know get the nausea and vomiting later on in the day to after being put fully under. If so maybe they can send a prescription home of phergan (not sure of the spelling). I really did not know there was someone out there that was worse about throwing up than me. I HATE it. I would rather suffer a million pin sticks or pinches than to be nauseous and throw up. I always thought I would be a awful bulimic person lol.

2. You need to bring someone to help you drive home. The hospital will not let you drive home afterwards normally by yourself so someone will need to be there. Plus you will want someone there to talk to the doctor for you and find out what he found and so on. You might not be fully all together after its done. And you dont want to forget anything. And like someone said with general you will be out it for most of the day and with the epidural it will probly take awhile for the feeling to return to the lower part of your body.

3. You will have some pain afterwards. I think each person different and so is there pain level. I had more problems with my 2nd one than the first. It will burn bad when you go to the bathroom for a couple of days. Make sure the give you script for pain meds and for bladder spasms. I have had 2 hydro's and neither was benefical to me as far as helping my pain or my urgency and frequency problems :shake: .

Some people including me get an awful UTI after having a hydro and cysto done. So be prepared for that. The doctor will probly send a prescription home for antibotics to if not it might be best to ask for that to.

Best of luck and I will keep you in my :pray:

[vm]

Laurie - Many people here have had the spinal during the cysto w/ hydro. ICNDonna has it done that way every time and I think she has had the procedure done 30 times or more. Promise.

When I was worrying about general anesthesia my uro was going to allow me to just get the "twilight" anesthesia. You DO have options --- it is absolutely possible to have it done other ways than with general anesthesia. Your doc may have a preference, but it is possible to do it other ways.

[vm]

BTW - I think green tea has caffeine - which upsets a lot of IC bladders... :(

[vm]

Here are some references from this site regarding the use of a spinal for this procedure:


149. Would a general cystoscopy, not under anesthesia, look normal to a urologist,
or would there be any indication of IC even then?

A: In order to produce glomerulations, the "tell-tale" sign of IC, the bladder has to be distended past normal capacity. This overdistention causes severe pain and requires the use of general or spinal anesthesia. You are correct. If IC were present the bladder would appear normal during cystoscopy without anesthesia.

http://www.ic-network.com/askthemd/may01.html

Q133: Is it safe to have hydrodistensions regularly ?

A: For reasons unknown, hydrodistension somehow alters the nerve transmission in bladder pain fibers. Not only does hydrodistention confirm the diagnosis of IC with the appearance of glomerulations (pin-point bleeding), it may also be therapeutic and provide significant pain relief and remission for many patients. . This is a very safe procedure done with monitored spinal or general anesthesia and can be performed as clinically indicated. The frequency of treatments is variable and depends on an individual's distinct clinical course. If relief is not apparent then a repeat distension can be done. Please remember that there are some risks associated with general anesthesia. Talk with your doctor about any concerns that you have.

http://www.ic-network.com/askthemd/feb2001.html

#18 "Which type of anesthesia (general or spinal) is usually preferred?"

Dr. Smith - Whichever the patient is more comfortable with, we even use IV sedation.

http://www.ic-network.com/askthemd/chrissmith1103.html#18

[Betsie]

Laurie,

I am sorry this is still so upsetting for you. I wish I could calm your fears. I am not sure if you want to do this, but sometimes it helps to go in and talk directly with the anesthesiologist even a few days before. I have done this as protocol many times and recently just met them in the pre-op. They are very compassionate and your comfort is of the utmost importance to them.

I would not let this fear stop me. It is important to know what is going on with your body and it is a very short procedure. I would suggest calling your Dr Monday and asking if they can refer you to the anesthesioogy dept, for a chat. Good luck and really, I am like you and I was fine. I promise!!! :kissing:

[Jean12]

My cysto with hydro and biopsy is also coming up in February and I had many of the same questions as you. When I asked my doctor about the general versus spinal/epidural option he said he likes to do general because the procedure is so quick (5-15 minutes) that it seems silly to have your lower half numbed up for several hours when you can be brought out of general so quickly. I prefer the spinal anesthesia myself for anything I can use it for so, even though my doctor wants general I am going to ask anesthesiology for the spinal/epidural option.

From the feedback I've gotten a bad flare is worse than the effects of the procedure and most doctors will give you pain meds in case you need them.

Jean

[ICLori]

Hi, Laurie, I think that the main thing you are afraid of at this point is the nausea, am I right?

Ask your doctor and anesthesiologist if you can do a spinal/epidural instead of general. Tell them you will not have the procedure unless you can get a spinal instead. Tell them why you are afraid.

I hate throwing up too. When I had my general anesthesia for the endometriosis operation, I was throwing up, and I started bawling my head off, just because I hate being sick to my stomach so much. The nurses kept trying to get me away from the sink where I was throwing up back to the recovery bed, to try to calm me down emotionally, but I wouldn't let them, and I was just saying, "I want to go home, I want to go home" over and over again. They finally let me just go be sick at home.

Believe me, if you can get a spinal with IV sedation, it's a breeze. You can be asleep or awake, whichever you prefer, and no nausea, no pain. The worst part of the whole thing is just getting the IV put in, that's all.

Blessings, Lori

[ICLori]

P.S. You have to get the procedure, though. Unless they are willing to do a potassium sensitivity test on you, which it sounds like they don't do. Anyway, once you get this test out of the way, you get a diagnosis, then you get treatment, and you start feeling better. This is not something you can live with easily without treatment or help, believe me. So you are going to have to just bite the bullet and get through this somehow.

[Laurie248]

Again everyone - thanks.

ICLori: Yes, I'd say the two things I'm most afraid of are nausea/vomiting and horrible pain. I'll see what they say about the spinal/epidural vs. general and I'll make it clear that the nausea element just isn't going to go over well. I think my appointment for this is on February 23rd, so I have to deal with the pain I'm in until then.... ::sigh::

Endometriosis....hmm...Lori, how do they diagnose that? Is that something they would see on say, a pelvic ultrasound? I also have polycystic ovaries (though I don't have PCOS the syndrome (I'm actually underweight, and don't have any of the other symptoms except multifollicular ovaries)) and my periods have been wacky since I entered puberty. Does endometriosis cause periods to become LIGHTER in some people? I've noticed over the years that my periods are getting lighter and lighter and lighter. Certainly not any less painful (that might be the IC -- I thought I had a urinary tract infection when I got my last period!) -- but I'm getting scared that "none of the stuff is coming out" during my periods since they are so light, and so short. That maybe it's all still in there (frightening thought). Is that even possible? How do you know you have endometriosis anyhow?

So glad I found you all - thank you, again,
Laurie

[ICLori]

Hi, Laurie!

You don't have to worry about extreme pain either during or after the procedure. At the most, you will have some burning when you urinate afterwards that feels about the same as when you get a UTI, and a slight worsening of your symptoms of IC for a few days. No excruciating pain at all. During the procedure, because they use either general or spinal anesthesia, you will not feel anything at all.

So put the worry about pain out of your mind right now because that is not going to happen.

The fear of nausea - if you have general anesthesia, that's a worry. If you have spinal with IV sedation, that's not a worry. Just do your best to get the spinal anesthesia.

Your symptoms do not sound anything like endometriosis to me. Endometriosis usually presents with extremely heavy, long periods with tons of clots coming out.

Endometriosis is diagnosed by: 1. The patient complaining of extreme pain that is cyclic (following menstrual cycle) and 2. a laproscopic surgery going in there to look for the endometrial cysts which are usually dark gray or black in color.

I had endometrial implants in my belly button of all places, all throughout the umbilical cord. I had extreme pain and inflammation around my belly button each month after my period. I developed scar tissue so large there that it looked like a finger was trying to poke its way out of my belly.

The surgeon took one look at the scar tissue trying to poke out of my belly and said "that's not normal, we have to go in and look at that..." So they did a surgery and found a bunch of endometrial cysts all in my umbilicus. They removed a bunch, sewed me back up. It returned a few years later, they removed my entire belly button and about 4-5 more ounces of flesh in there full of endometrial implants.

I don't see any reason to believe you have endometriosis, but you could talk to your doctor about it if you have any other concerns.

Blessings, Lori

[ICLori]

P.S. No chance for your lining to be all clogged up in there. Whatever lining your body chooses to build each month, is sloughed off each month. If anything didn't fully slough off, the symptom would be continuous bleeding.

Your extremely light periods only mean that for some reason (hormones, etc.) your body has decided each month to only build a very light lining of endometrium. Because your body only builds a very light layer of this tissue each month, you don't get very heavy periods.

Blessings, Lori

[ICNDonna]

First of all, there is very little risk with either general or spinal anesthesia. Anesthesiologists are experts and if there is a rare case where there is a problem, they are capable of dealing with it.

That said, I will tell you that my choice of anesthesia is spinal. I prefer to be aware of my surroundings and like to see what my bladder looks like when it's distended --- and I get to watch it on a TV screen.

Here's what happens to me when I have a hydrodistention: I am asked to arrive at the hospital two hours in advance of the procedure. Very soon after arrival, I remove my clothing and put on one of those gorgeous hospital gowns. A nurse will come in and take vital signs (blood pressure and temperature), check to see that paperwork is in order, and gives me a tranquillizer (usually I get 10 mg valium). I don't get anything else except the spinal for the procedure. They usually start an IV before I am taken to the surgery "holding" area, but occasionally the IV is started in the holding area. By then the valium is working and I am feeling very relaxed. The anesthesiologist visits me there as well.

When I arrive in the actual surgery room, I am given the spinal anesthetic and shortly after I lose feeling in my lower abdomen and legs --- a strange, but not unpleasant feeling. The actual procedure only takes a few minutes, after which I get a gurney ride into the recovery room to wait for the spinal to wear off. If I feel even slightly nauseated at any time, I immediately tell the nurse caring for me and am given medication to stop it.

I'd have to check my surgery history file to verify exactly how many times I have had this done, but I know it's either 37 or 38 --- and every time I have had improvement in symptoms for anywhere from six to 22 months. Since my diagnosis thirty years ago, this has been a major treatment for me.

The first few times I urinate after a hydro are very uncomfortable --- it feels like my bladder is being squeezed tight --- but other than that it isn't bad at all. Just to be on the safe side, I suggest you ask your doctor to prescribe pain medication for the first few days. You may not need it, but better to have and not need than to need and not have!

I have a problem with pain meds and nausea so my doctor orders phenergan tablets for me to take with pain meds. If I take one pain pill, I also take one phenergan tablet.

When I have a hydro, I spend one night in the hospital, but most go home the same day. You will definitely need somebody to drive you home.

Warm encouraging hugs,
Donna

Green Tea is an irritant to many IC bladders!

[Dianne]

I've had many cystos and no problems afterwards. I've done office cystos and cystos under anesthesia with other procedures in the hospital. I was never nauseated. I always opted for a spinal so I didn't have to deal with that. Also I like to watch the screen and see the bladder on the tv camera and have the Dr. discuss what's going on.

[classics]

Seems the opposite happened to me. When I had a spinal for a c-sec years ago, I felt nausesated, but with the cysto/hydro I had general anesthesia and felt no nausea. For the c-section, the nausea was taken care of immediately by the anesthesiologist. It's possible that I was also given something for nausea with the cysto/hydro while I was still under.

When you have any surgery, you can talk to the anesthesiologist about experiencing bad nausea. They can take care of that ahead of time. Also, let them know if any pain medications cause problems. Like for me, I can't tolerate morphine.(sp).

[Laurie248]

Group:

I'm starting to think there might be some confusion here. What I'm going for is some sort of DIAGNOSTIC procedure (as my urologist says it, "cystoscopy under sedation with bladder biopsies") -- he never mentioned anything about "hydrodistension".

Is there some sort of difference that I'm missing? I have no idea if I have IC or not -- this is part of the diagnostics.

Are we talking about two different things? Let me know.

Laurie

[ICLori]

Hi, Laurie, no, we aren't talking about two different procedures. I'm not sure why your doctor neglected to mention the hydrodistention part of it, but the ONLY way you can diagnose (or rule out) IC with a cystoscopy is by over-inflating the bladder with water then using a cystoscope to look inside. During this time, doctors often will take small samples of the bladder lining (biopsies) to help make the diagnosis.

A different procedure is the in-office cystoscopy, where only a tiny amount of water is placed in the bladder and the cystoscope is inserted. While this in-office procedure may have some usefulness, it can not be used to diagnose or rule out IC because it is only during the hydrodistention of the bladder that the glomerulations or ulcers can be seen that occur with IC. An in-office cystoscopy is not painful and you do not need anesthesia for it.

The fact that your doctor is using anesthesia for the cystoscopy automatically means that a hydrodistention is involved. And the fact that he is using it to diagnose you, also automatically means a hydrodistention is involved.

You can call your doctor to double-check, but I guarantee you, if he is using anesthesia, a hydrodistention will be involved.

A cystoscopy with hydrodistention IS a diagnostic procedure, because the ONLY way you can diagnose or rule out IC via cystoscopy IS with the hydrodistention. They overfill your bladder so that they can see if you have the glomerulations or ulcers that occur with IC. These glomerulations can not be seen when the bladder is only partially filled (in-office cystoscopy, no anesthesia required.)

Because the bladder HAS to be stretched in order to see the glomerulations that happen with IC, a hydrodistention HAS to take place. That is the only way to stretch the bladder out enough to see the signs of IC. When such over-stretching takes place, it is extremely painful and that is why the anesthesia is needed.

Clear as mud, LOL?

Blessings, Lori

[ICLori]

P.S. This procedure is BOTH a diagnostic procedure, and a treatment procedure, at the same time, because patients often get some relief with hydrodistention.

So that is why you hear patients talking about it as both a diagnostic test, and a treatment for IC.

Hope that clears up some of your confusion.

Blessings, Lori

[ICLori]

Here is some more information about how the hydrodistention/cystoscopy is used to diagnose IC and what will be done during the procedure to you:

Blessings, Lori

What is a Bladder Distention?
(hydrodistention)

Bladder distention, is one of the most essential tests for the diagnosis of Interstitial Cystitis. Because the bladder distention is painful in IC patients, and if IC is suggested, this procedure is normally done under general anesthesia.

This procedure consists of distending the bladder, or stretching the bladder, to it's full capacity by instilling gas or liquids through the cystoscope. This test can detect inflammation, a thick stiff bladder wall, Hunners ulcers, and glomerulations (pinpoint bleeding) that may be seen only after the bladder is stretched.

The doctor may also test the patient's maximum bladder capacity, the amount of liquid or gas the bladder can hold under anesthesia. Without anesthesia, capacity is limited by either pain or severe urge to urinate.
Many people with IC have normal or large bladder capacities under general anesthesia. However, a small bladder capacity under anesthesia helps support the diagnosis of IC.

Procedure:

patient is administered anesthesia

irrigation fluid is pumped into the bladder, usually 80-100cm above the patients bladder capacity.

the irrigation fluid is pumped into the bladder until it comes to a drip, this is when the bladder is filled to capacity.

pressure is applied to the urethra by pressing in the anterior vaginal wall. This is done to prevent leaking so an accurate volume of fluids can be taken.

the bladder is observed for possible rupture, although this is very rare.

the fluids are held for one or two minutes, the bladder is emptied, and the contents of fluids are measured

the fluid is of clear color, then becomes blood tinged when the last 50-100cc of fluid is released (the bladder capacity is lowered in the classic/ulcerative IC and normal in the non-ulcerative IC)

the bladder is than viewed again in the distended state

a second therapeutic distention may also be required

the bladder is distended again and held for approx. 8 to 10 minutes

biopsies may be taken, usually from two separate spots of the bladder

catheter is usually placed (if deep biopsy is performed)

the procedure is complete

[ICLori]

More info about cystoscopy with hydrodistention:

Cystoscopy with hydrodistention under general or regional anesthesia remains the "gold standard" for diagnosis of IC. Drawbacks of this procedure include operative and anesthesia risks. However, it remains the best diagnostic test currently available, although 10% of IC patients show no signs of glomerulations or ulcers upon hydrodistention, despite their symptoms.[

[ICLori]

Still more information about the use of cystoscopy and hydrodistention for diagnosis of IC:

A cystoscopy with hydrodistention, performed under general anesthesia, is the standard diagnostic procedure for IC. The bladder is filled to capacity with water (commonly) or gas. This allows a urologist to examine the epithelium with a small, telescopic fiber-optic camera, or scope, that is inserted through the urethra to the bladder. Glomerulations (tiny hemorrhages that are the telltale sign of IC) are revealed only while the bladder is distended. These hemorrhages are present in 95% of IC cases.

Less frequently, epithelial ulcerations (Hunner’s ulcers), lesions, and scars are found. Hunner’s ulcers are indicative of IC, though hydrodistention is not needed to see them. A biopsy, in which a tissue sample is removed and analyzed, is performed to distinguish between ulcers and cancer and to evaluate the presence of mast cells, which are sometimes seen in abundance in IC-affected bladders. Some IC sufferers do not have epithelial glomerulations or ulcers. Cystoscopy may also reveal bladder stones, which can cause symptoms similar to IC.

Cystoscopy and hydrodistension are performed under anesthesia because distending the bladder of an IC sufferer is painful and otherwise causes urgent urination. However, hydrodistension may have therapeutic effects. Some patients repeat the procedure occasionally as treatment for IC because it may temporarily alleviate pain and pressure.

[Laurie248]

Lori:

My physician said to me "I am going to perform a cystoscopy under sedation with bladder biopsies." My husband (who has a toxicology/anesthesiology background) is saying to me: "there is a difference between anesthesia and sedation, why do you have to be anesthestized for this???"

Ideas?
Laurie

[Betsie]

What is the difference, I guess his question confuses me. I think it is truly a personal choice at this point, but I would answer that I sure wouldn't want to be feeling this procedure...either general or spinal...I think you should call your Drs office Monday and have them go through your options. I still would opt for a general, even with risks, as they are present in anything...but it sounds like you need to discuss this with him and make it clear he knows your fears and proceeds based on them. I still assure you, the relentless worry far outweighs the procedure and it's recovering time... Donna explained her experience and spinal beautifully, I would say my experience was identical, except for the anesthesia. By the way, the risks are similar for something as similar as a colonsocopy or GI endoscopy etc. So I really think all you need is some reassurance and to decide which method you would pick.

Perhaps your husband could speak to him with you.

[ICLori]

I think you and your husband both need to speak to your doctor.

I know you think that your doctor is going to a do a procedure on you where he does not need to use any anesthesia on you.

We are telling you over and over again, if what he is doing is a diagnostic test for IC, he HAS to do a hydrodistention, and he HAS to do it using either a spinal (with or without sedation) or a general anesthetic (with or without sedation first).

I have never heard of bladder biopsies being done without hydrodistending the bladder.

I have never heard of IC being diagnosed via a cystoscopy without hydrodistention being involved.

I have never heard of a hydrodistention being done without spinal or general anesthesia.

I'm not sure why you are insisting we are all wrong, and that your doctor must be doing something completely new and unheard of in the field of medicine concerning IC.

I think when you call your doctor and ask a few pointed questions, you will come back to the boards and tell us that he IS doing a hydrodistention with cystoscopy, and that he is doing either sedation with spinal or general anesthesia.

I'll wait patiently until then.

Blessings, Lori

[ICLori]

If you WANT, you can just believe we are all talking about a COMPLETELY different procedure from what your doctor is going to do, and then you can just be surprised when the day comes for the procedure and the anesthesiologist talks to you. Doesn't make any difference to me. We were just trying to help you out is all, and answer your questions.

[Laurie248]

Lori:

*I* believe you - trust me. ::hugs:: I think my husband is trying to calm me down about the whole anesthesia thing by saying "I don't really understand why you need it/why you're having it". That may be his way of addressing my fears. Trust me, I've been listening intently to everything you've told me. I have 100% confidence that are all telling me the truth.

I will speak to my doctor though and tell him I want whatever will not make me nauseous/vomit, as that is my main concern.

On a totally unrelated note (though maybe not), (and I'm sorry to be graphic but well, there's no other way) -- lately I have been having what I can only describe as "white clumps" in my urine. Almost every time I pee, they're there. They aren't hard, or small, like stones or anything, but almost like...some sort of discharge, that seems to be coming from my bladder and/or urethra. This is frightening me. Has this ever happened to anyone???? My urine culture of last week came out clean of bacteria so I don't think the white stuff has to do with bacteria.....????

Maybe I should post this somewher else on the board?
Laurie

[Jean12]

Lori and Donna, thank you for your clarity is just how this procedure is done and what to expect. Because mine is coming up on February 12th and I have never had one done, though I've had IC (dx via symptoms) for decades I have benefitted from your experiences and your clear explanations. It's remarkable that with all the pain that this disease brings, I'm fearful of the pain from the procedure. In reality the pain I may experience from this is probably going to be less that what I used to dealing with from the disease. I'm feeling a little better that it isn't going to be as bad as I was anticipating. :bow:

Jean

[Laurie248]

Jean:

Maybe you could email me (Laurie248@aol.com) your experience once you have it, or perhaps post it to the boards so others may benefit? Mine is on February 23rd, so it would help to have your account as well, I'm sure.

Sending support,
Laurie

[ICLori]

Hi, Laurie, thanks for believing us. The discharge you mention has been noticed by quite a few IC'ers over the years. There is speculation that it is the bladder lining itself sloughing off. No one really seems to know for sure. But it's common to IC'ers.

The problem is, your doctor gave you a shorthand version of what he is going to do to you. Doctors do that sometimes, they don't take long enough to fully explain.

There are only two types of cystoscopies that are ever done.

There is an in-office cystoscopy, which has very limited value in terms of IC and many times doctors do not even do this one to IC patients. It can not diagnose IC, because they can not observe the lining of the bladder this way, because the bladder is not overdistended, and the bladder can not be overdistended during an in-office cystoscopy because it is extremely painful to do so and requires either spinal or general anesthesia.

When you have an in-office cystoscopy, the doctor does not give you any sedation. You just get in the ob-gyn position and he shoves a cystoscope up you, puts a little water in until you feel an intense urge to void, and he looks around and says "hmmmmm...." and then pulls the cystsoscope out. Then he tells you, "I want to do some biopsies - for that, we have to have you do a cystoscopy under sedation, in the operating room."

Is your cystoscopy going to be done in the operating room, or in the office? If it's in the operating room, then you are having the second type of cystoscopy that exists - cystoscopy with hydrodistention, which is a diagnostic test (THE diagnostic test) for IC, and during which, biopsies can be gathered. Because biopsies can only be done when the bladder is overfilled, and because overfilling the bladder causes excruciating pain (especially in IC'ers), it MUST be done, just as other painful surgeries are done, under anesthesia. (That sentence right there should help your husband understand why it needs to be done under anesthesia - mention hydrodistention and extreme pain to him, and he'll understand the need for anesthesia immediately.)

Why didn't your doctor use the word "hydrodistention" and "anesthesia" to you? I don't know, doctors are often in a hurry and don't fully explain things.

But I assure you, there are only two types of cystoscopies that exist. An in-office cystoscopy (no anesthesia or sedation and no biopsies) and one in the operating room that is used to diagnose IC and get biopsies - and THAT cystoscopy is ONLY done WITH a hydrodistention, and it's ONLY done with anesthesia, either general or spinal.

They often give IV sedation before administering either general or a spinal. In the three operations I have had, one with general anesthesia and two with spinal anesthesia, in every single case I was given IV sedation with versed before the procedure. If they give you enough Versed in the IV, you won't even remember getting either spinal or general anesthesia administered. All you will know is that two seconds after they injected the Versed into the IV line, you fell "asleep" and didn't wake up until the recovery room. That might be the reason your doctor failed to mention anesthesia, because he plans to put enough Versed in you that you won't remember getting either spinal or general anesthesia.

BUT - the anesthesiologist HAS to talk to you before the operation and you HAVE to sign consent forms acknowledging the risk of anesthesia, etc. before they administer it to you so there is no chance that you will go into the Operating Room not knowing which type of anesthesia they will be giving you.

I don't know why the doctor didn't explain this more fully to you, but I am 100% certain that what you are getting is a cystoscopy with hydrodistention, in which biopsies will be performed, and that either an epidural or general anesthetic willb e administered.

Call your doctor, ask some questions, and you will see.

Blessings, Lori

[ICLori]

P.S. Laurie, there are lots of other people who have posted about their cystoscopies on this board...have you read those other accounts? Of course the accounts are all the same, the only difference being some people had general anesthesia administered, some people had epidural/spinal anesthesia. I think reading those other stories (there must be dozens of them if I remember right?) will help calm you.

The biggest thing you are afraid of right now though is nausea. We already told you there is little to no pain, so I am sure you are no longer afraid of that.

And the only way to allay your fears about the nausea, is for you to talk with your doctor and see if you can get an epidural rather than general anesthesia. So I really think a call to your doctor's office is in order.

Blessings, Lori

[Laurie248]

Lori:

Thanks for the prompt and thorough response - wow, I thought I was the only one who around on the PC today (I'm going to grad school online, so I'm doing some "homework" today). And yes, absolutely I believe you. I guess my husband just sees me so frantic and scared, ruminating over the procedure, the anesthesia, this, that and the other, and he just wanted to calm me down. I didn't mean for it to come across as my not believing you - I absolutely do.

Bladder lining sloughing off? Oh lord. That doesn't sound good. I notice my lower abdomen is swollen/tender after urinating when I have this discharge -- I didn't know if it was vaginal or coming from the bladder. Is this *bad*? I can't imagine it's good, right? Or normal? Can anything be done about it?

The in-office cystoscopy I did have, yes. My uro noticed my bladder was "raw" at that point in time. Thought it was a result of lots of scar tissue from recurrent infections. He said at this point, he wouldn't want to do another in-office one. That it would probably be too painful. That he needs to do one under sedation at this point. : ( It's been a year now, and I've had no relief, so clearly something else is going on.

The one he's doing will be done in the local hospital. So OK, I'm now clear that it will be the one with anesthesia -- thank you so much for the clear explanation. Of course now I'm getting panicky. Nausea, nausea, nausea and pain, pain, pain are my main concerns. The test itself doesn't scare me. Hell, even the results at this point don't scare me, it's the "prep" I guess, and the "afterwards" that have me nervous.

What can you tell me about going back to work? Same day? Next day? Are you in such hideous pain that you need major meds (here to, read: afraid of meds that cause nausea)???

Appreciate this all,
Laurie

[Laurie248]

Will do, Lori. I'll call my doctor on Monday.

*Thankyou*

Laurie

[ICLori]

I totally understand, I hate pain and nausea too. I don't have nausea when I take percocet, so I always ask for those pain pills.

I've read all kinds of different reactions to the cysto/hydro. I wasn't even prescribed any pain pills for mine, and didn't need them, all I had was burning when I urinated and slightly increased symptoms for a few days after the procedure, but I've heard of other people reacting badly to them. It seems most people are somewhat uncomfortable for a few days afterwards and it's good to request pain pills so you won't have to be uncomfortable at all.

If you get sick with narcotics, ask for Phenargen, which is a strong anti-nausea med they use to stop sickness with narcotics. It works extremely well so I don't think you will get sick if you also take that.

BTW, I found out I was wrong about something - there is one account on this board of a lady getting a biopsy done just during an in-office cystoscopy. My uro had told me that can only be done in an OR, but hers did it in-office. But it does sound like your doctor is doing the hydrodistention/cystoscopy. So your experience will be a lot like mine was - first the in-office cysto which didn't show much, and then the operating room cysto/hydro which allows them to really see the wall of the bladder and get biopsy samples.

I can totally understand being afraid of the general anesthesia, but there is a chance you wouldn't get sick with it - I did, but that's just me, I think I get sick very easily. I throw up with all narcotics except for Percocet, for instance. I've heard of people getting general anesthesia and not getting sick at all. So even if you have general, it doesn't necessarily mean you would be sick, especially if they give you good anti-nausea meds along with the general. I asked for anti-nausea meds, and I know some were given to me, but the nurse said, "you're going to have to throw up sooner or later, so I don't want to give you more meds because it would just delay the inevitable..." I have no idea why she said that or if it was true, but she just let me throw up and cry.

The symptoms you are having right now are unfortunately very typical of IC. I know, it's awful. I hate this disease. The good news is, once you are diagnosed, they can give you treatments that hopefully will soon have you feeling like yourself again and feeling good.

Once you go through this proedure, you'll see it wasn't a big deal at all, honestly! :)

Blessings, Lori

[ICLori]

P.S. If this one doctor says he will only do it with general anesthesia, despite your wishes for an epidural, you can always go to another doctor, right? :) So you won't have to do anything you don't want to.

BUT - there is a chance you might someday have to have general anesthesia, for other operations, in your life. So this is a fear you might possibly have to face down someday. For instance, if you ever get your tonsils out or have plastic surgery on the breasts or face, they have to use general anesthesia for that (anything above the waist, basically, they have to use general anesthesia). Sometimes it's good to face down fears. I was terrified of heights so I went to Army Airborne School to learn to jump out of airplanes. I'm still scared of heights but feel good that I was able to jump out of the airplanes in spite of my fear.

Blessings, Lori

[Laurie248]

Lori:

Since it seems like you and I are both here right now (simultaneous responding)!:

Sex. Are you in a relationship? My husband and I have been abstaining for the past 2-3 weeks and he's going insane. I feel bad for him, and I feel bad because I want to be close to him. Yes, I know there are other things we can do and trust me, for the last 2-3 weeks we've been doing them, but when he asked me: "When can we have intercourse again?" I just didn't know what to say. Part of me is actually scared that it will exacerbate the IC symptoms and I'll have to wonder if that short while of pleasure will be worth the unbearable pain I'll have to endure afterwards...so I've been saying a lot of "no, no, no" and "later, later, later" and later just never comes. This has been terrible for the sexual aspect of our relationship - as I'm sure you might imagine. Is/can anything ever be done about this? Or am I just destined to be in pain every time we make love? For a while there, he didn't want to because he was afraid I'd get a UTI. Now that my urine has been culturing negative for bacteria, he's no longer afraid of me getting a UTI he's just afraid of me being in PAIN, which is what usually happens. :( Can you shed some light on this, or offer any hope or words of encouragement?

And lastly, you wrote: "I asked for anti-nausea meds, and I know some were given to me, but the nurse said, "you're going to have to throw up sooner or later, so I don't want to give you more meds because it would just delay the inevitable..." I have no idea why she said that or if it was true, but she just let me throw up and cry. "

So wait, the anti-nausea meds didn't work??????? You were given them and threw up anyhow? ::panicking:: ???

Thanks again,
Laurie

[ICLori]

Hi, Laurie. I know I asked for them...not really sure what they gave me. To be honest, I am an Army wife and use military doctors and sometimes I think the standard of care is not what it could be. Other times it's great. So it might be that they just forgot to give me the drugs. Don't go to an Army hospital if you can help it! I'm guessing they just didn't bother to give me the meds. Also, they gave me a shot of morphine afterwards, and morphine makes me 1) break out in hives and 2) throw up. In fact I was wearing a yellow allert bracelet that said, allergic to codeine and morphine but they gave it to me anyway. I was too out of it to notice. Then when I had massive hives all over, I asked for an antihistamine and was told "no." Why? I don't know. I think because they were Army nurses and just didn't give a Hoover's dam. So it might have been the morphine making me throw up and not the general, it's hard for me to know for sure. Anyway, all I can say is, try to have better docs and nurses than that, LOL! I'm sure yours will be much nicer/better.

Hoo boy the intercourse question. There are lots of ICers who have found a way to have intercourse without (too much) pain. Some try different positions, many find that lots of artificial lubrication helps, if you tend to get UTI's a prophylactic antibiotic can help greatly. There are others of us who have tried all the tricks we can think of, and still can't tolerate intercourse. I'm one of those people, and haven't been able to tolerate intercourse for a couple of years. I'm very sad about that.

But I'm a very unusual case. Most IC'ers find relief with one medication or treatment, or a combo of meds/treatments. There are a bunch of different meds/treatments for IC, some of which help some IC'ers some of the time, LOL. Basically my doc told me, when you see a bunch of different remedies for a disease, it means none of the remedies work very well.

So you have Elmiron, which helps around 30-40% of IC'ers. So 30-40 percent get their lives back to normal, including being able to work, being able to enjoy intercourse, etc.

Then you have Elavil and the other tricyclics, which helps around 60% or more of IC'ers (the reason my stats are variable is, one study will say one percentage, another study will say another percentage, for all of these treatments. So it's hard to know what the true, exact percentages are.). So 60% of IC'ers who try this group of meds, will get much better and have a normal life again.

Then there are the antihistamines, like Atarax, antileukotrienes, like Singulair, and various antacids and other medicines that have shown to help some IC'ers.

The most common 3-pronged approach to IC seems to be, Atarax, Elavil, Elmiron. Elmiron takes about 6 months to work, so the Atarax and Elavil help keep you relatively comfortable until that kicks in (if it kicks in.)

Then there are DMSO treatments, which are treatments they instill into your bladder. There are so many different treatments, and so much information on all these treatments on the board.

What I'm trying to say is, by trying this med and that, this treatment and that, most IC'ers are comfortable most of the time. There is good reason to believe you will be like most IC'ers and after you are diagnosed, you will get your life back. It might take months before you are fully comfortable again, so you do need to have great patience, but I am hopeful that you will have your life back again, including intercourse and other things.

I'm a very unusual case. There are a few IC'ers who react badly to pretty much all meds, or for whom the meds are simply ineffective. I am one of the IC'ers who have reacted badly to the meds, or for whom the meds don't work. I have extremely severe IC, almost end-stage, and currently there are no meds that help me. Even the narcotics irritated my bladder further. I can take them for short-term use just fine, but if I take them long-term, they actually irritate my bladder so much that the irritation outweighs the pain-killing properties. So I am in a bad position.

In fact, my uro told me that my only options at this point (besides living with it which I don't want to do because the symptoms I have are so severe) are neuromodulation with an implanted device like the Interstim or Bion, or bladder removal (cystectomy). So I am in a study for the Bion right now and hope and pray it will give me my life back, including intercourse, because I miss having that closeness with my husband. Other things just aren't quite the same.

Sorry to bore you with my story, just wanted to say that my case is an extreme case, and so what I am going through, will almost certainly not apply to you. I expect that after you get your hydro/cysto done, you'll get a diagnosis, and your doctor will probably prescribe the happy threesome of Elavil, Atarax and Elmiron. Then within a few months, at most, you will forget the IC boards even existed, you will almost forget you even have IC, and you'll be back to normal. That's what I think will happen for you.

Blessings, Lori

[vm]

Laurie - I am able to have intercourse without pain. There is hope for that. Always remember when you read the boards that there aren't a lot of people posting here who feel super or who are in remission. You will mainly read posts from people who are hurting and looking for more information and support. Keep that in mind as you read and balance it out, OK? :kissing:

[callie0767]

i also had the epidural last october after having the general the last 7 times in 21 years. i was nervous about it but it turned out fine. i did end up staying overnight in the hospital because i was still numb at midnight.but even that was okay. no probs at all. i still get nervous before each procedure thats normal even after all these years.

[IC SARAH-CPP]

Oh boy do I sympathize with the sex question. In fact, read my post on the flare board about my sexual experiences!! I hate it. I am also having my hydro done in Feb and am really nervous. Hope yours goes well
Love Sarah

[Laurie248]

VM and IC Sarah-CPP:

Every night my husband says to me: "Can we have intercourse tonight? I miss you," and every night I say, "God, I want to so bad, but I'm so scared. I'm so afraid I'm just going to be in agony afterwards." So, we end up not. :(

Now, I had been having (what I thought was) a "flare" several days ago, where I was having burning with urination and burning "down there" even when I WASN'T urinating. This made it "easy" to say no. My pain has lessened somewhat to where I'm not feeling that constant burning pain, though I still do feel 'tender'.

What should I do? What do you suggest? Do I risk intercourse and end up in agony afterwards? Or do I wait until February 23rd (good grief) to have my cystoscopy and find out what's wrong with me, get some treatment going, before approaching it again? I feel so torn and sad. Don't know what to do.

And VM yes - please tell me it won't always be like this. I just got married in August and my husband I were previously VERY sexually active. This change to our lives has been so saddening for the both of us -- I miss being close to him.

Any advice?
Laurie

[ICLori]

Most IC'ers get their symptoms under control with medication and/or treatments. I'm one of the rare ones for whom nothing has worked. I don't know the exact percentage of patients like me who have bad luck, but it can't be a very large percentage.

What most likely will happen in your case is, you'll get diagnosed, your doc will start you on meds (most likely Atarax, Elavil, Elmiron) and you'll get your life back, including intercourse. The only reminder that you have IC will be the pills you have to take, and maybe some things you have to be careful about eating/drinking.

Blessings, Lori
P.S. As far as being intimate or not? I don't know. Some IC'ers have found ingenious ways to cut down on the pain afterwards - one lady I read about came up with the brilliant idea of using a condom filled with water, then frozen, to insert vaginally afterwards to help stop the inflammation (and the pain). Some use heat to try to help the pain afterwards as well. The patient handbook has tons of tips about what positions work best, lubricants to use, etc. that many IC'ers find helps them. It's a tough decision to make. I do hope that your husband understands you (might) have a very serious disease, though, and that this is not your fault.

[BRIDGET-MS]

I Had Mine In July 0f 2003 And After The Baby I'm Having Another. The Only Problems I Had Was Going To The Bathroom After The Cysto. When I Got Home The Only Way I Could Pee Was To Sit In A Hot Tub Of Water. Don't Strees Out About How Bad It Could Be Because That Will Make You More Scared About It. At Least They Knock Us Out When They Do It!!!!!

Bridget

[Laurie248]

Hey everyone:

OK. Here's some new weirdness. I called my urologist office to say I got the paperwork for my "preadmission" testing on Feb. 15th at the hospital (bloodwork, urine culture, pregnancy test, consult with an anesthesiologist, etc.) and I called her to say I hadn't been given any information about the procedure yet, what can she tell me...??

This is a "cystoscopy with random bladder biopsies" she said. Does NOT include hydrodistention of the bladder. She said, "Laurie, you've had a cystoscopy in the office before, but you're so inflamed now, we want to do another one in the hospital where you can be made sleepy, so we can do the bladder biopsies." I mentioned that I had heard it was typically done with hydrodistension. She said "No, that's not what you're getting." She also was saying things like: "The anesthesiologist will talk to you about all sorts of IV sedation to make you sleepy: sometimes there's Valium, other times there's X, Y, and Z."

OK, so now I am TOTALLY confused. What on earth am I having done here? Is there such a thing as "just as cystoscopy"? Sounds like this is what I'm getting. And that being the case:

1. What sort of "sleepiness" is she talking about? Valium??? IV? Hunh???
2. If I don't get the hydro, I guess I'll not get any of the benefits of feeling better afterwards that people are mentioning, right? :(

Ugh. Help.
Laurie

[ICLori]

Hi, Laurie...it does sound like you are getting just a cystoscopy, which is kind of weird if you ask me because the ONLY way to conclusively diagnose IC is by overdistending the bladder and then looking for the signs of IC. So I'm not sure what your doctor is hoping to accomlish just doing another regular cystoscopy (but this time with Versed it sounds like, but no anesthesia I guess since it's not a hydrodistention.)

If it were me...I'd ask some pointed questions about whether or not this procedure can be used to conclusively diagnose IC.

I can't believe the way doctors vary on their approaches to this disease. Honestly it sounds a lot like your doctor doesn't know what she is doing with IC.

If you don't get a hydrodistention, you also won't get the remission that many get following it, you are right.

Just how does she plan to see the hallmark signs of IC if she doesn't hydrodistend the bladder? And if she's not planning on seeing the hallmark signs of IC, is she just going to go ahead and guess that it's IC or assume it's IC anyway and treat it as such?

Really strange...hopefully someone else will pipe up soon with some more info/suggestions...

Blessings, Lori

[Laurie248]

Lori:

I'm so sad and frustrated and exhausted. The nurses at my urologists office are probably just sick to DEATH of me I'm calling them so often. It has been over a year now, and I still have no relief. Today, my whole lower abdomen is burning and I feel sick to my stomach. I also have a strange discharge (hate to get graphic, but can that have something to do with IC???? I've had all sorts of GYN cultures that turn up no infection or STD's or anything).

The nurse said to me that a cystoscopy under sedation is being done to see if I have "chronic inflammation of the bladder" if there is "bacteria in the folds of the bladder tissue" that could be causing my problem. Honestly? I don't think they THINK it's IC. I think they just think, "we don't know what's wrong, and so we need to get in there and look -- and since an in-office cystoscopy at this point is probably going to be painful, we need to do it in a different setting, with sedation this time". What do you think?

Do you think I should ask whether or not I should have the hydrodistention???? Or should I assume he knows what he's doing?? This guy is highly respected in his field.???

What can you tell me about Versed??? Am I looking at the nausea/vomitting issues again?

Frustrated and sad,
LL

[Laurie248]

Hey all:

I called my urologist back. I wasn't too satisfied with what the nurse told me - so of course I get the same nurse on the phone. This is what she said:

1. I asked if he was doing this procedure to rule out IC. She said he was. So I said, "well how is that possible without doing hydrodistention too?" She said that with hydro they overinflate the bladder 3, 4, times normal capacity. For me, he would - of course - be injecting fluid into the bladder (otherwise it would be like a collapsed balloon) but not so much that it would be considered "hydrodistention". She said he'll be looking for mast cells, little hemorrhages, all the signs of IC.

2. I said, "well, if I don't get the hydro, do I not get the therapeutic benefit of that either?" She said, "yes, some patients do get some relief from the hydro. If you want to ADD that to your procedure, you certainly can - it won't change the day of the procedure, won't affect scheduling, etc. - I just have to add it to the procedure list for that day."

3. I made an appointment to sit down with my actual urologist (not the nurse) on February 16th at 1pm. The day after I do my pre-admission testing. She suggested I make a list of questions.

What a mess, eh?
Laurie

[Dianne]

This is just my opinion, but I don't see any reason to do just a cysto/biopsies only if you're looking for a diagnosis of IC. I just wouldn't think you would be likely to get a diagnosis doing just a cysto and there's no possibility of pain relief from a cysto without a hydro. On my first time I did a cysto/hydro/biopsies all at once with a spinal and I was better immediately than I had been in months. It actually helped for almost a year. I didn't get that on my next one but I sure did on the first one. I get a spinal with plain lidocaine and no other meds. before/during/after and the bizarre thing is every time I have a plain spinal (lidocaine only), I get a 3 day total remission. It's happened every single time. Just wish I could get relief like that all the time. I need to be a partner though with my Dr. and it took 5 uro's before I found that. And while I am totally unhappy with the time frame it takes to get what I want from my uro, I do get to give input and have choices. The way I see this relationship working is "you give me all my options and I will pick, thank you." And I keep looking til I find that.

[ICLori]

I think Dianne is right on the mark suggesting that you go ahead and do the hydrodistention.

I just don't understand how this doctor thinks he can see the petechial hemhorrages without overdistending the bladder. Everything I've read about IC (and others will back me up on this I'm sure) says you can not see those changes until you do a hydrodistention. Maybe this doc knows something all the other docs who treat IC do not?

If they are looking for bacteria, I guess they want to rule out chronic cystitis. That's fine. I mean, IC is kind of a diagnosis of exclusion anyway.

But maybe someone else can help me out here - how can a doctor see the petechial hemhorrages/glomerulations specific to IC WITHOUT overdistending/hydrodistending the bladder?

Here's a quote about that...maybe the nurse is confused and it really IS a hydrodistention only she's not aware of it...??:

In a best case scenario, patients who are suspected of having IC complete a voiding diary over a period of time that will allow both the patient and physician to see the voiding patterns, urine volumes and pain levels. If a diagnosis is suspected, the physician may then elect to perform other diagnostic tests to rule out other diseases. If these tests come out negative, and the doctor strongly suspects the presence of IC, they may elect to perform a hydrodistention. By distending the bladder with water, they can then view the bladder walls for the characteristic petechial hemorrhages (glomerulations) found in many IC patients. Other new diagnostic testing procedures are currently being researched.


I just don't know....

Blessings, Lori
P.S. It's unlikely you would have any nausea with just the IV sedation (Versed). I never have and have never heard of anyone getting sick from that.

[Laurie248]

Dianne:

Here's the situation: my urologist doesn't know WHAT is wrong with me. All he knows is over the past year I've had 11 instances (that's practically every month) of UTI symptoms -- sometimes with bacteria culturing out, other times, not. At this point I'm feeling pain "in that area" to varying degrees, almost on a daily basis. So basically, he's doing this cystoscopy (with sedation) to get a better look around and see what's going on. I don't know that he's doing it to get a diagnosis of *IC*, I think he's doing it to get a diagnosis of ANYTHING, at this point. Does that make some sense?

So when I go to talk with him on the 16th of February, do you think I should suggest
doing the cysto/hydro/biopsies all at once with a spinal? And see what he says?

Laurie

[ICLori]

I hear you - I think he's trying to see if it's chronic bacterial cystitis or something. Seems like it would make the most sense to get it all over with and done in one fell swoop.

Otherwise, if it's not bacterial in origin, you will be back in the OR, only this time to do a hydrodistention.

Wishing you the best,
Blessings, Lori

[Laurie248]

Lori:

Right, exactly. Both my uro and this nurse have mentioned on various occassions that I've had "cystitis" (I guess on those times when I was feeling all the symptoms, but didn't have an actual UTI). Let's assume he does it as planned (without the hydro) and says "OK, it's chronic bacterial cystitis". What on earth would that mean? Is that something *different* from IC? Is there some sort of different treatment? (I swear I'm going batty with all these "cystitis"es).

On the 16th, I'll discuss the whole idea of a a hydro+ whatever he wanted to do as well and see what he says. Is there some reason he wouldn't think it would be necessary or something?

Laurie

[ICLori]

Yeah...chronic cystitis (bacterial in origin) would respond to antibiotics, IC wouldn't (usually).

Blessings, Lori

[Laurie248]

Hm. So it's possible I could come out with a diagnosis that might respond to antibiotics???? Why wouldn't they have had me on them already?

Oh and P.S. What is the likelihood of developing a UTI from this cysto/hydro procedure. I swear sometimes I get a UTI/UTI-symptoms from BREATHING. I can't imagine this is going to be a non-invasive procedure...

Laurie

[Dianne]

They usually give prophylactic antibiotics when doing a hydro, at least my Dr. does.

[codyryonwoodward]

They might want to rule out several things and maybe that is why they dont have you on any antibotics yet. They want to be sure of what you have and dont have. There is a chance of getting an UTI. I did not get one with the first one I had but I got an awful one the second time around. Then got an a awful yeast infection from the medicine.

[toolally]

[QUOTE= Hi, this is my first time responding on here so not sure if I am doing it right!
I live in Lincoln, England and started with pain in the bladder area in April this year - went to the doctors and was put on antibiotics for a water infection - went back 2 days later as it was worse, my urine was tested and they found blood, another sample was sent off to the hospital, this came back negative again for infection so then my doctor referred me as an urgent case to have a flexible cystoscopy which I then had to wait for until 24th June!! Have just had that done and the urologist said there was inflammation on my bladder wall and that I would now have to go for a procedure to scrape the bladder wall to try and take away some of the inflammation and the likely outcome would be IC (I have been reading your forum since April and find it very informative), I also have to have a CT scan as I get a lot of pain in my groin and lower abdo and have done for years so there is a possibilty that it is all linked. I am scared stiff of what I am having done next - still havent got my appointment though! Do you think it will be what you have all been talking about as he never gave me a name for the procedure? I am absolutely sick of feeling rough and in constant pain and sometimes cannot believe that all this pain can come from the bladder. I feel as if I am in limbo as until I have a firm diagnosis I cannot try anything - I am also scared that they will find bladder cancer or something like that, I am 35 years old with 2 lovely daughters aged 12 and 7 and just want to feel normal!! Sorry to go on, hope someone can help!
Toolally

[toolally]

Could anyone just reply so that I know I am doing this right!
Thanx

[callie0767]

you are doing it right.have you looked at the ic handbook? it gives good advice about diet,medicines and treatment options.not all of us respond to the same treatment.i know icdonna and i both get relief from a cystoscopy/hydrodistension. hang in there .try to research as much as possible. also theres a link here that will also connect you with doctors that treat ic. not all doctors treat ic or even aware of it. knowledge is power.
try the diet it helps a lot of icers but not me. i still stick to it though. hang in there it will get better .

[mare mare]

Toolally,
It sounds like you will probably be going to have a cysto and biopsy done soon. Do you have a date set for your procedure? I'm having my first one too.
(Aug. 3rd) Actually I can't wait (that sounds kinda sick:loco: ) but I've had it with all this PAIN!!!! Especially my GROIN! I so can't wait to see what's going on inside me! Ic has also caused me to be depressed. I pray my Uro finds something he can do to eliminate my PAIN! (I replied to another post of yours.) I get confused on here too sometimes! But this is a GREAT place with a lot of helpful info and CARING people!
How do-you start a post?????:smile tee

Mare Mare

[ICNDonna]

Toolally, there is one thing you could try now and that is the IC diet. It can't hurt and, if what you have is IC, it could help substantially. You'll find the IC diet in the Patient Handbook at http://www.ic-network.com/handbook

The time before diagnosis is the hardest time of all --- I hope you get some answers soon.

Sending healing thoughts,
Donna