Hydrodistention,bad or good

[Oceana]

This thought is bothering me all day today as I have a compulsion to be obsessive thinking towards this disease,I am thinking that given the theory that most research agrees that the pathognomonic symptom of an IC bladder is a problematic lining which is most if I am not mistaken Ic bladders lining is defective,leaky or ruptured, i thought that hydrodistention in cystoscopy would create more harm than good in determining the diagnosis. If in the process of the distention that is when they can accurately say it is IC,I sure do not want it more aggravated by creating more ruptures in it.But on the other hand I am thinking that hydro maybe give the bladder muscles a stretch it needs or the only way to accurately determine the disease or the extent of the disease,so I am puzzled whether hydro is any good as an adjunct to an accurate diagnosis or a possible treatment to this disease or aggravates the lining condition.

Another annoying thought I can't get rid of......

[ICNDonna]

When my symptoms become severe, I go for another hydrodistention. Without fail, I have had relief lasting anywhere from six months to 22 months from hydrodistention. Including the hydrodistention that diagnosed my IC, I have now had 34 hydrodistentions. My symptoms have been pretty stable since I was diagnosed in 1975. I do pretty well until my bladder shrinks again --- then I go for the hydro, which stretches it and I regain capacity.

I still have to watch diet and I do have DMSO instillations monthly, but without the hydros, I can't imagine what my quality of life would be.

Sending healing thoughts,
Donna

[lyse3]

Oceana

I have had the same questions regarding hydrodistention. I feel that it must cause at least microscopic tears in the muscle when it is overstretched. I know that weight lifting and other weight type exercises cause small tears in the other types of muscle in your body, which is why trainers tell people to rest a day between exercising with heavy weights, to give the muscle a chance to repair itself. When we overstrain a muscle we have to let it rest for several weeks to let it repair the small tears in it. I know that the muscle in bladder is a different type of muscle from skeletal muscle, but it seems the problem might be the same. I have had only one hydrodistention, and it seemed to make my bladder more irritated afterwards. The DMSO treatments which I had taken before without pain caused me intense pain after the hydro. But others have found great pain relief with hydros. So I know everyone reacts differently to it. My problem is not so much diminished capacity--I have an almost normal capacity--but my main problem is pain, with frequency not quite as big a problem as the pain. Maybe those with very shrunken bladders are helped because of being able to hold more urine before the volume produces pressure and the urine is forced through the tears in the bladder with more force. Whereas those whose bladder is fairly large don't get that much from the hydro except increased irritation to the lining. Or it could just be some other factor that I have no awareness of that causes about 50 percent of patients to get relief from hydro and the other 50 percent not to. Sorry to get so long with rambling on. I wish my urologist could help but he usually just says "I have no idea what causes I.C. and why some treatments help it. No one does. If I did know that I would be a rich man, etc." I guess it is basically the truth but it is so frustrating, because when you are in intense pain you can't just say "oh well nobody knows and we just have to live with it".
Good luck,
lyse

[Tina Nacho]

My Uro explained how the hydrodistention works as follows:

By stretching the bladder muscle beyond "normal" capacity, nerve endings are broken. The hydrodistention not only stretches the bladder, but also promotes regeneration of those nerve endings.

Although some people have good results from hydrodistentions, there are others who do not. The only way to find out if this procedure is right for you is to go through it. In my experience and research, I have not heard of any permanent bladder damage being done by having this procedure. I usually get one of these done every six months.

I sure can relate to your frustration with your doctor's lack of effort. If he doesn't know, then one would like to think he would go looking for the proper answer. They usually don't though, and maybe he shouldn't be looking to get rich, but just answer his patient's questions. Yep~I've seen plenty a blank face with some of these doctors and sometimes think they are just lazy and don't want to be bothered. It's a shame!

Good luck and if you don't get satisfaction from your current Uro, don't be afraid to shop for another one who can bring you relief and answer your questions more thoroughly.>Tina

[lyse3]

Tina Nacho,

Thanks for your reply. I had forgotten about the killing of the nerve endings theory. That does make sense, altho I guess I thought the nerve endings were supposed to stay dead, to stop the constant irritation of them by the urine. On the other hand, if you lost too much nerve stimulation the bladder wouldn't be able to signal you when it was time to urinate. It's so hard to understand when I don't have the physiological and chemical background to know what really is happening, or what layer nerve endings are being damaged even. I am the kind of person who likes to try to make some kind of sense of those things anyway, and apparently you are too. I didn't mean to make my urologist sound like a villain or uncaring. He isn't but he doesn't seem to want to even discuss the theories of cause and treatment being researched now, or to admit that a lot is known about the disease at this point, even though a whole lot more has to be found out before we can get a cure.
Thanks for listening.
Lyse3

[Tina Nacho]

Hi Lyse3:
You're certainly welcome [img]smile.gif[/img] I guess part of what I consider "good doctoring" is a physicians willingness to go the mile for their patient. IC, in particular, is complex and its' cause is unknown. Therefore, being as up-to-date on new discoveries, research and treatment options is critical in treating this disease and bringing you, the patient, relief. I have heard many horror stories here on the boards that can be directly traced to doctors not knowing more about IC and the treatment options available. Your doctor, unfortunately, seems to fit that catagory and you can save yourself a lot of misery by finding someone else who makes an effort to perform "good doctoring".

I don't mean to sound like I'm attacking him. I'm sure he's a good person. But your needs come first in my book [img]smile.gif[/img] >Tina

[lyse3]

Tina,

Thanks for the reply. What you say is true. I am seeing a second urologist who is to refer me on to the pain clinic, and I hope to explore possible other treatments with her before I give up and do nothing but pain management. I think there are still some things not tried--heparin sulfate being one, but my urologist has said "I have nothing further to offer".
best wishes,
lyse3

[MelanieJ]

Hi Oceana,
The hydrodistension is no longer considered the "golden standard" diagnostic tool for IC. Many IC patients were not receiving an IC diagnosis because some of us do not have the "hallmark/classic" signs of IC which includes Hunner's ulcers and the like. Researchers now know there are two types of IC: ulcerative and non-ulcerative. Non-ulcerative types were not being properly diagnosed by following the old NIDDK standard of criteria, which obviously wouldn't be seen upon hydrodistension. IC is more and more being diagnosed by exclusion, which is ruling out all other diseases. You can read about my story and journey to diagnosis by following the link in my signature line below.

I know the obsessive thoughts you are having...it's tough to know what to do some days with this stupid disease. Hang in there!

Melanie J.

[SusanK]

The only hydro that I have had was when I had the procedure done for diagnostic purposes with biopsys. I felt like there was little relief for me afterwards for the amount of discomfort that I had to go through with the procedure and the pain and discomfort afterwards. I refuse to go through another one unless I have to. I am taking a hand full of medications which does give me descent results but I have constant pain but not as much frequency as some. Everyone is different. As far as what causes IC - in my case it may be the connection with autoimmune disorder - I have chronic epstein barr virus which at this point seems to be somewhat in remission. Stress, stress, stress - the main culprit in just about everything I think - that and genetics.