urethral dialation and hydrodistension - really necessary?? please help!!

[maryc]

Hi everyone,

After 10months of really hoping this would all just go away I went and consulted a urologist today and he wants to do a cystoscopy, a biopsy and diathermy and a urethral dilation and hydrodistension.

I have been doing some research here on urethral dilation and hydrodistension and it sounds pretty horrific and im terrified of making my symptoms worse by agreeing to do this. Can you please tell me is hydrodistension the only way a urologist can diagnose IC? when i asked my urologist why he felt we had to do this he said this is how we check for IC. Also i have never had re-occuring urinary tract infections so is a urethral dilation really necessary? This is something i only thought of after i left the consultation and i feel i have a lot of unanswered questions any advice or stories of personal experience would be much appreciated

Thank you!! Mary xx

[ICNDonna]

I ws diagnosed by hydrodistention in 1975. My urologist also did a urethral dilation because my urethra was very small. The result for me was that I had some pain for a few days, but then felt little pain for almost two years. I have now had over forty hydrodistentions --- and they have allowed me to live a normal life. I had my last one in May 2008 and so far I am still doing pretty well.

One thing to remember is that for every medical procedure, there will be at least one horror story out there. Most people who have hydrodistentions do pretty well afterwards; a few do have complications.

It's your body and your decision to make. I think I might ask why the dilation --- if there's no valid reason for it, it's very possible to do the hydro and biopsies without that.

Donna

[angel7655]

I had a hydrodistention in 2003 and it was painful for a few days. But not horrible. It actually put me into remission for six years. Way your options and decide what is best for you. Good luck.

[Mrs. Peel]

The first dilation and cystoscopy/hydro for me was also a couple of days' urethral discomfort. I slept a lot for those of days, and I got in some trouble with weakness only because I forgot to drink enough.

It actually helped me in a lot of ways in the long run, and is the best way to find out exactly what is going on in there.

[rgreen]

I had the urethral dilation during my cystoscopy in February. My urologist did not tell me he was doing the dilation, but he had to because I have urethral stenosis. I would question why he is doing the dilation to you. (Not something to be concerned about) I would just wonder why they are doing it.

I had discomfort with urinating for a couple of days afterward. I would say about 3-4 days after I had pain on urination. I won't lie, I dreaded going pee because of the burning. Maybe ask for a mild pain reliever. My urologist was not going to give me anything but I asked and he gave me Tylenol #3, I took that regularly for the first couple of days and it was a HUGE relief.

You will be fine, and hopefully this will be a great step in helping you out! I was okay after the urethral dilation. My symptom's improved but only for a short time as they have now come back, I however, did not have the hydro. I simply had the cysto w/ dilation. I've heard many positive stories with the hydro though.

Good luck and keep us informed!

[maryla]

Mary,

For me the urethral dilatation was necessary because I was retaining way too much urine, which can set off a lot of other problems. And I continue to get them in office when I get instills. Just not as much as when I'm put under of coarse.

Yes, I'm sore afterwards, but i do think it does help me.

Hugs and blesssings

[maryc]

Hi girls a big thankyou to all your kind words of advice and reassurance. Certainly feeling more relaxed at the idea now thanks!! I guess there is bound to be some discomfort afterwards but hopefully that will be short lived and in the long run it does seem like it could pay off. At least I have the ball rolling now and Il be waiting some time on the waiting list so I'll see how I feel closer to the time.

Cheers,

Mary

[BT2008]

Hey Mary,

If you do indeed have IC, anything that messes with your bladder is probably going to make your symptoms worse--at least for a little while. IC bladders are very sensitive and temperamental as well as very unpredictable! We are all different in how we respond to these treatments. So, unfortunately, you will not know how it will affect you until after the fact! But that will be the case with everything that you try, whether it be procedures or medications!

But--a hydrodistention is the most definitive way to diagnose IC, and finding out for sure whether you have it or not will be crucial to getting started on the right treatment plan for you.

I have had two hydros in the past year (I was diagnosed with the first one) and there were definitely a few days where I had more pain than usual! But like someone else suggested--just ask your uro if you can have something for pain and if he agrees then you can take that to reduce your discomfort. If not, plug in your heating pad and live with it on your tummy (not on a high setting though), use ice packs if they work better than heat (or use both!), take some tylenol (not ibuprofen!), sit in cool or warm baths (whichever makes you feel better), and try to find something to distract your mind from concentrating too much on the pain. Even if he gives you some pain meds, you might still want to do these things too! I certainly have on many occasions; I have practically lived with a heating pad on my tummy for over a year!

If you do have IC, and you feel like it, use that time to continue reading the many threads here on the forum that will help you better understand the disease you are now living with. There is an incredible amount of knowledge and wisdom to be found here! I don't even want to imagine where I would be right now if I had not found this website!!

Oh...and sorry, but I don't know anything about urethral dilation.

Good luck!
~Beth

[rgreen]

Oh...and sorry, but I don't know anything about urethral dilation.

Good luck!
~Beth

Urethral dilation hurts like a mother!!! REALLY hurt, but it cleared my symptom's up...for a short time. I think I was okay for about a month after having the dilation then they came right back. But everybody is different!

[Mrs. Peel]

I started having dilations as a child in the 60's because my mother and my urologist said so. My brothers and I had under-sized urethras which were causing UTI's for me and bedwetting for them. One brother had slight kidney damage from reflux.

I don't know when my mother started having dilations. Apparently, small urethras ran in her family on her father's side. She didn't mind the dilations at all.

The boys had one dilation under general anesthesia, while I continued, I think twice a year, until I was in my late teens. I stopped because they were giving me nightmares, but by then I was good at making sure I was voiding completely. So I had a slightly finicky bladder, but was mostly fine until recently.