Need some help with cystoscopy

[JustmeGemmy]

Hi there

I posted a while back about possibly having IC. My only symptom really is frequency, I have no pain (that I am aware of, although I have PCOS & IBS so there's usually a pain of some sort in that general region!)

I saw a professor at an NHS Hospital who was baffled by my one & only symptom.. He asked me a bunch of questions about my medical history & I answered no to pretty much all of them.. Things like: Have I ever had major surgery, did I ever wet the bed as a child & so on. He just sat back in his chair, put his arms up & said "You're kidding me!?". He did a quick exam & I guess it was fine & he sent off a urine sample.. I've not heard anything back so, again, I guess it's fine? I have no way of contacting this Dr so I'm not sure.

He's ordered a couple of tests, the first one being a cystoscopy at the end of June. Now I'm worried because my bladder is doing ok at the moment so I'm terrified of getting it done in case it causes a UTI & I'm back to where I started 6 months ago! Except that I've used all of the antibiotics so I've no idea what's left if one does appear! Not only that, but I am so worried that I will have pain afterwards I've heard horror stories of people being ok before having the cystoscopy & then being in constant pain afterwards.

The hospital I have to go to only use a gel to numb the area before putting the camera in.. Is this normal? Is it going to be painful? I have a very low threshold for pain.

Please, someone tell me it will be ok. Part of me wants the test so I can get some sort of a diagnosis, but the other part is terrified of what might happen afterwards I just don't think I will be able to cope if it shows nothing abnormal but I'm 10 times worse!

[ICNDonna]

If all that will be done is a cystoscopy, it may be uncomfortable, but shouldn't be horrible. I find that if I concentrate on relaxing, I do okay with a cysto. If they plan to distend your bladder, it would require anesthesia.

After a cysto, I usually experience a little pain the first few times I urinate, but it's not bad.

Donna

[JustmeGemmy]

If all that will be done is a cystoscopy, it may be uncomfortable, but shouldn't be horrible. I find that if I concentrate on relaxing, I do okay with a cysto. If they plan to distend your bladder, it would require anesthesia.

After a cysto, I usually experience a little pain the first few times I urinate, but it's not bad.

Donna

They will fill my bladder with water to full capacity while the camera is inserted, no anaesthetic - just a numbing gel :S They also might take a biopsy while this is going on, according to the leaflet I received in the post.

Should I be overly concerned about the risk of it making my current symptoms worse? & the chances of getting another UTI.. I've already ran out of antibiotics :S

[ICNDonna]

I suggest you talk to your doctor about your antibiotics. When I have a hydrodistention I am given an antibiotic before surgery, but otherwise I don't take them without a diagnosed infection. Too often an IC flare can have the same symptoms as infection and I don't like to take them unless absolutely necessary.

Donna

[JustmeGemmy]

I suggest you talk to your doctor about your antibiotics. When I have a hydrodistention I am given an antibiotic before surgery, but otherwise I don't take them without a diagnosed infection. Too often an IC flare can have the same symptoms as infection and I don't like to take them unless absolutely necessary.

Donna

I ended up having to take a lot of antibiotics before my GP decided to refer me to a specialist, now she won't prescribe anything.. I doubt I'll get any antibiotics from her even if I did develop a UTI!

My bladder has started playing up again & I've had more frequency again. I'm really worried that if I don't go through with the test, then the specialist will discharge me & I won't get any answers!

I feel so mixed up! & torn between getting an absolute diagnosis & suffering even more than I already have.

The cystoscopy will only really rule out other things, won't it? The Dr told me he was going to do an ultrasound scan to make sure I'm not retaining any urine after I go to the toilet & I think he was scheduling something else as well.. But I'm not sure. I just don't want them to do anything invasive.

[dg2901]

An in-office cystoscopy isnt anything to get worked up over. I'm confused though as to whether whats scheduled is in fact just a simple cystoscopy or a hydro-distention. I also cant imagine any DR performing a bladder biopsy without some sort of sedation--the bladder has sensitive nerves and this would cause pain. You really need to phone the DR's office and ask specific questions about whats scheduled and demand answers to your satisfaction.
The possibility of a UTI after a cystoscopy (or anytime one is catheterized) is possible and quite probable. Because of this DR's will usually prescribe an antibiotic either prior to and/or for a few days after a cysto. This is another concern that you need an answer to.
I personally have had both an in-office cysto and one done under anesthesia in a hospital setting (cysto/hydro/biopsy). Aside from a bit of discomfort upon urination the first couple of times afterwards, I was fine.

So, phone your Dr, question and demand answers to your satisfaction. And most importantly, try not to get too worked up over this procedure.

Wishing you well.

[JustmeGemmy]

An in-office cystoscopy isnt anything to get worked up over. I'm confused though as to whether whats scheduled is in fact just a simple cystoscopy or a hydro-distention. I also cant imagine any DR performing a bladder biopsy without some sort of sedation--the bladder has sensitive nerves and this would cause pain. You really need to phone the DR's office and ask specific questions about whats scheduled and demand answers to your satisfaction.
The possibility of a UTI after a cystoscopy (or anytime one is catheterized) is possible and quite probable. Because of this DR's will usually prescribe an antibiotic either prior to and/or for a few days after a cysto. This is another concern that you need an answer to.
I personally have had both an in-office cysto and one done under anesthesia in a hospital setting (cysto/hydro/biopsy). Aside from a bit of discomfort upon urination the first couple of times afterwards, I was fine.

So, phone your Dr, question and demand answers to your satisfaction. And most importantly, try not to get too worked up over this procedure.

Wishing you well.

I've been looking on the NHS website (because the urology department will be closed now until next week) about a cystoscopy & I will be having a flexible cystoscopy & they will fill my bladder with water during this. I will be awake & have a local anaesthetic gel before the cysto is inserted.

Sometimes they give a patient an injection of antibiotics to prevent getting a bladder infection - I will ask them next week if they will be willing to do this for me. It will put my mind at ease.

Is this the hydrodistention? I will call them next week and ask them questions.

I'm still really nervous about having this done.. I hope I'm worrying over nothing & it will all be fine.

[ICNDonna]

What you describe is not a hydrodistention. A hydrodistention (sometimes called over distention) requires either general or spinal anesthesia and the bladder is actually stretched.

During a cystoscopy without hydrodistention water is instilled into the bladder because when the bladder is empty, it collapses like an empty balloon --- the water allows the physician to view the bladder lining.

Donna

[JustmeGemmy]

What you describe is not a hydrodistention. A hydrodistention (sometimes called over distention) requires either general or spinal anesthesia and the bladder is actually stretched.

During a cystoscopy without hydrodistention water is instilled into the bladder because when the bladder is empty, it collapses like an empty balloon --- the water allows the physician to view the bladder lining.

Donna

So what I've been booked for is just a normal office cystoscopy? Does that mean I have nothing to worry about? I hope it's all just built up in my head.. I would really like some answers!

Would IC show up on this type of cystoscopy? My GP thinks I might have an inflamed bladder (is that the same as IC?), I guess that would show on the cysto.

Thank you so much for your patient replies, I really appreciate the reassurance I hope I get some answers soon.

[ICNDonna]

It does sound like a cystoscopy. If you are worried it's okay to call the doctor's office and specifically ask if you are scheduled for a distention (I sincerely doubt that).

A cystoscopy will not usually diagnose IC, but can be an important part of the "ruling out" process. When I had my first cysto, my bladder appeared to be completely normal and healthy --- when my bladder was distended under anesthesia, the IC became apparent. I do have an inflamed bladder. When I had my last hydrodistention on May 16 my uro said my bladder was red and inflamed.

If you can manage to relax, the cysto isn't horrible --- not my favorite way to spend five minutes, but not horrible. I relax by concentrating on breathing slowly and evenly and consciously relaxing my muscles.

I hope it goes well for you.

Donna

[JustmeGemmy]

It does sound like a cystoscopy. If you are worried it's okay to call the doctor's office and specifically ask if you are scheduled for a distention (I sincerely doubt that).

A cystoscopy will not usually diagnose IC, but can be an important part of the "ruling out" process. When I had my first cysto, my bladder appeared to be completely normal and healthy --- when my bladder was distended under anesthesia, the IC became apparent. I do have an inflamed bladder. When I had my last hydrodistention on May 16 my uro said my bladder was red and inflamed.

If you can manage to relax, the cysto isn't horrible --- not my favorite way to spend five minutes, but not horrible. I relax by concentrating on breathing slowly and evenly and consciously relaxing my muscles.

I hope it goes well for you.

Donna

Thank you! I think it's just a normal csyto then, which is not great, but sounds bearable!

At the moment, because I don't have any pain, most of the meds they prescribe for an overactive bladder & IC seem the same, so a definite diagnosis isn't my top priority if it involves a lot of invasive tests. I will bring it to the attention of the specialist I am seeing though because a diagnosis of an overactive bladder might be wrong - It's not a constant problem, at the moment I don't feel too bad. & it's not related to stress or nerves at all either.

Does a normal cysto show inflammation at all? I think that's the reason my GP referred me to the specialist in the first place!

[ICNDonna]

Yes, some inflammation can show --- my first one didn't show any. I absolutely agree that neither stress or nerves actually cause IC. However, like any condition, either can cause an increase in symptoms.

Donna

[JustmeGemmy]

Yes, some inflammation can show --- my first one didn't show any. I absolutely agree that neither stress or nerves actually cause IC. However, like any condition, either can cause an increase in symptoms.

Donna

My GP decided, on my last appointment with her, that I had an OAB which was bought on by anxiety.. I do suffer with anxiety but I've not noticed any correlation between the two. Sometimes I have frequency & urgency.. Sometimes I don't. It doesn't seem to matter whether I'm stressed or not. But she wouldn't listen to me - the same as she wouldn't listen when I told her several times that I did not have chlamydia! (Of course, I wanted a gyn exam to rule out things like bacterial vaginosis as the cause & she ordered STD tests.. I was beyond annoyed!)

I'm not feeling too bad at the moment.. If there is any inflammation, will it still be there while I don't have urgency & frequency problems?

So many people have told me to take cranberry tablets to help with my symptoms.. Even if it's not IC, I don't think they would help! According to lab results, I've not had a single UTI - despite antibiotics helping occasionally to clear up a flare. It's all very confusing to me!

[ICNDonna]

I have to agree on the cranberry --- if there's any possibility of interstitial cystitis, it can be the worst thing we can ingest. Antibiotics can have anti-inflammatory qualities, which is why we feel better so quickly when taking them.

IC discomfort can vary a lot day to day. If I don't drink enough, I have increased frequency and discomfort. I stay away from foods and drinks I've learned are a problem so it's been a long time since my last diet-induced flare.

For me personally, having a diagnosis was extremely important.

Warm hugs,
Donna

[JustmeGemmy]

I have to agree on the cranberry --- if there's any possibility of interstitial cystitis, it can be the worst thing we can ingest. Antibiotics can have anti-inflammatory qualities, which is why we feel better so quickly when taking them.

IC discomfort can vary a lot day to day. If I don't drink enough, I have increased frequency and discomfort. I stay away from foods and drinks I've learned are a problem so it's been a long time since my last diet-induced flare.

For me personally, having a diagnosis was extremely important.

Warm hugs,
Donna

That does explain why the antibiotics would help for a period of time & then the problem would just come back. I thought I had recurrent UTIs but every time my GP sent off a sample, it would come back as normal.

Do you know why cranberries are so bad? I've never been a fan of the drink (My GP told me to drink it when I had my very first UTI). It's foul!

If the problem gets worse then I'll probably push for a diagnosis.. I couldn't imagine being in the pain some of the people on here are in/have been in. I keep hoping that the problem has gone away because I've been feeling ok for a couple of weeks now! First time in 6 months that I've felt like a normal human being! It's still there, sort of.. But it's nothing like it was, thankfully.

How long did it take for you to get a diagnosis? I hope I don't have to explain IC to the urologist.. I've seen some awful stories on here from people who have had bad experiences with Uros. I'm on the NHS so I can't look elsewhere for another Dr. I googled the professor I'm currently under the care of.. He works for private healthcare as well so I have more faith in him than if he were just a normal NHS Dr.
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