Hydrodistention with biopsy - necessary?

[jp1272]

Hi everyone, I am new to the forum - although I have been lingering around for over a year ;-)

I have been plagued by IC-like symptoms for over 15 months now and haven't had much luck with getting a diagnosis. I have so far seen 4 urologists and 4 gynaecologist, all of whom have more or less told me I can't have IC for reasons such as my bladder capacity was too big, or 'it's a very rare disease and therefore it's unlikely' for me to have it, or I simply 'don't look like it'...

I have to add that I live in London, UK and I somewhat get the sense that medical professionals over here are a little behind understanding, diagnosing and treating IC and Pelvic Pain compared to the US. Still, the way I have been dealt with so far has been disappointing and often patronizing: they are the doctors so therefore they are right... (and I better stop looking up symptom/treatments on the internet, annoying patient that I am)!

Anyway, I have now found somebody who finally has taken me and my symptoms more seriously. He strongly believes that I have IC and has scheduled me in for a cystoscopy with hydrodistention and biopsy, to get a more definite answer.

My question to you now: is this actually really necessary? I don't seem to read about other people having biopsies - is this now a little outdated? And hydrodistention? I have read in the past that glomerulations are not necessarily specific to IC?

I am conscious of not wanting to inflict any more pain on myself, BUT I do want to start some kind of treatment and it seems, no diagnosis, no medication etc. I can see why this diagnostic route might be the right way, as I don't really suffer from frequency or nocturia, but I have plenty of other symptoms that point towards IC.

Anyway, looking forward to your thoughts x

[ICNDonna]

:welcome: to the IC Network.

It's an individual decision to either have or not have a hydrodistention and biopsies. I did both back in 1975 when I was diagnosed. The great thing is that it put me into remission for many months.

An IC diagnosis is made based on ruling out other possible causes for the pain, along with hydrodistention, biopsies, or sometimes a potassium sensitivity test. The biopsies will show whether there are mast cells, typical of interstitial cystitis. When a doctor is making a diagnosis, he/she doesn't just look at the results of the hydro, but will review your history, results of other tests, etc. Some doctors are willing to make a diagnosis based on symptoms alone --- if both you and your doctor are comfortable with that, it's your body and you who must decide.

I hope you have a diagnosis soon. My worst time with IC was before diagnosis. Once I knew what I have, it is much easier to deal with it.

Donna

[SharonA]

For me, it was much easier dealing with IC once I knew for certain that it was the reason for my pain symptoms. Before the cysto/hydro, I was imagining all sorts of terrible things. It was a relief when I was diagnosed. Then, I could go forward learning what I needed to know to help myself feel better.

:):):)

[mary124]

Same here for me, it took about 5 years and many tests, procedures before getting a dx IC. Even when we decided to do one, the consulting doctor told mine that I probably have this but I was too young to have it. (I was 32 at the time).
Once I had an Offical Dx I was ok with it as like others have said I was imagining all sorts of stuff wrong with me.

[c2miracle]

Hello and :welcome: When I had my hydrodistention I also had a biopsy. I was glad my doctor did the biopsy so I have "peace of mind". Like Donna says it is your choice but I would think you would want to have some assurance that there is not anything else going on. Hope everthing works out, we are all here to support you. Think positive! :smile tee

[jp1272]

Thanks very one for their reply x

I have definitely decided to go ahead with the hydro and biopsy, and I am now scheduled to have it done at the end of the month. I agree, it's best to narrow the diagnosis down and hopefully I'll be clearer after the procedure.
I have to confess that deep down I think I know it's IC, but still - I can't help but have some hope left in me thinking it might just be something trivial and it all can be fixed with some tablets...

I am quite nervous about the general anaethetic and the biopsy part, i.e the pain, but hopefully it'll all be over with very quickly and I can start some treatment soon.

This whole illness can be so mean at times: one minute I am fine, I don't feel any major aches and pain, the next minute the pain kicks in - and I immediately develop a little black cloud over my head and I get very depressed over things. But when the pain goes, my mood immediately lifts along with it.

I so desperately want my old life and body back... (I even started thinking in terms of my life before the pain started and since)! I am going through a real sense of loss actually - I guess it's all part of coming to terms with the (impending) diagnose?!

Anyway, I'll be back with news of the results x

[BeverlyJ]

I agree with all of the above'' Once your truley diagnosed it gives some what peace of mind. Most Uro's want to do a biopsey to eaither diagnose you or rule out IC. Becouse IC is a rare disease to diagnose and treat most Uro's don't want to mess with it'' I would recomend you find another Uro that would do the biopsey. Knowing that you have it would benafit you to at least get on the right meds and treatment. Anyway's I hope you find answers soon.
Take care.:pray:

[Zygala87]

I also agree with all the answers above. I've had two HYDROS. and both helped me greatly. One I had a diagnoses, two I felt better as far as symptoms go. I was down for a awhile and had asked the Doctor for some pain meds to get me through the next few days. Right after the procedure I was unable to void on a bed pan but the nurse helped me to the bathroom and I had no trouble. Make sure the Doctor agrees to enough pain pills to last at least 3 days. I only needed them for two days but we are all so different. I was just fine and babied myself for a weekend. I hope you have a good experience and are back to normal ASAP. I think you will feel better knowing if you do have IC or not. Please keep us posted. We all care here. Hug, Ziggy

[tigger_gal]

for me, I was dx'ed that way because like you I got the run around and passed off to doctors. My theory on IC dx'ing is seeing is believing! I say go for it, have them take pictures and get a copy. Not only will you have a visual dx, you will have a picture of your bladder and will know exactly what your bladder can hold.
good luck :)

[Hiltonbeth]

Hi there, just wanted to give you some reassurance. I had my second cystoscopy with biopsy done in Yorkshire the day before yesterday and it was fine (I think biopsies are standard procedure over here if they're doing a cysto). I felt ok when I came around - had some bladder discomfort, but they immediately gave me paracetamol. I was given a catheter for a couple of hours, which was also fine.

The worst part of the whole process for me was the first wee after the op, which can be pretty excruciating! My advice is to take it v slow. Two days later I feel almost back to normal - still can't stand to wee without being on painkillers but when I'm on them (just ibuprofen), I hardly feel any pain at all. I had a cystoscopy done a few years ago and had the same experience - op was fine, pain on first few toilet trips afterwards. I know everyone has a different experience but I found it nothing to worry about both times. Hope it goes well for you too! :)

ps I don't suffer from frequency or nocturia either - my big symptom is pelvic pain. And I was also given the 'it's a very rare disease' spiel! I was diagnosed with ic in 2003 and my current urologist didn't believe it because it's so rare.

[SharonA]

Just a note about Ibuprofen...Some people with IC have found that it can cause problems. Acetaminophen (Tylenol) might be a better choice. It all depends on what you can tolerate.

[jen74]

You can possibly be diagnosed with IC without having to go through a hysrodistention. I was DX with only a regular cystoscopy. At the time I was sedated( my urogyne at the time said that he does not do even regular cysto's with IC patients awake, he said it is usually to painful). I asked him if he took biopsies and he said no. He said they do not like to do biopsies unless it is warrented(if they see cancer or something irregular). He just did the cysto and said my bladder was extremely inflammed and that I had IC. Now just recently I saw a different uro and he did a regular cysto and he took a biopsy, but he was looking for different things like bacteria, and yeast. But he did tell me that biopsy also is usually only done when it is clearly needed.
Good luck in whatever you decide to do.
Jen

[jp1272]

Thanks everyone for their replies, I really appreciate it xx

As I had an 'ordinary' cystoscopy done last October and my then urologist told me my bladder looked fine, I think I have to grit my teeth and go through with the full monty a la cystoscopy with hydro and biopsy... I need a treatment plan - which no doctor wants to offer me if I haven't been through all of the above.

Any tips for the recovery period?

I have booked 4 days off work, got my hotwater bottle lined up, and baking soda and paracetamol ready (sadly can't do Ibuprofen - the pain and worry about not knowing what's wrong with me has given me acid reflux! Otherwise it would have been my preferred choice of painkiller).

[Goldfinch]

No one upthread has mentioned diet, unless I missed it. Have you been reading about the IC diet? Have you tried it? If you do have IC it is very possible that you will find some relief within two or three weeks or even sooner by going on a strict elimination diet. If your cysto/hydro indicates you have IC, this may reduce inflammation in your bladder and give you a leg up on recovery and a running start for successful treatment.

[tigger_gal]

lol goldfinch! diet never crossed my mind!

When you have your hydro, they should give you an iv anti and one to come home on. I am not hydro friendly, but I am at the point that I really need one. Most do very well after. Good luck

[jp1272]

Since I suspected I had IC for a while I have been reading up on it and am totally aware (more or less) what to eat/drink. The biggest pain inducer is alcohol for me, I can literally feel it in my bladder within seconds after having had the first sip. Luckily I never really enjoyed alcohol much in the first place... Which is a bigger problem in regards to chocolate! That's a really though one to give up!!

I also suffer on and of with VV (which can be quite horrible pain at times) and I am aware that I should avoid oxalates ... I have been trying to reduce my intake of foods high in oxolates for two weeks now, and I think it actually helps...

However, following an IC AND a low oxalate diet is a bit of a challenge. I wish there was a book out there or a list that would tell me about the foods that are now left for me to eat. I feel seriously limited in my choice. Maybe I just need to sit down and compare both diets and create a merged IC/low-oxalates food list...

Maybe I should start a new thread about this - unless somebody already asked about it in the past?

P.S Tigger Gal - what's an 'iv anti'?