Had a 2nd urology opinion...confused about some things...

[Ruchily]

Hi there! :)

So the 1st urology appointment I went to just did a cystoscopy, took some ex-rays, and when all was said and done handed me an Rx for Elmiron. With no diagnosis or help! :rolleyes:

So I got a 2nd opinion today. ;)

The doc wants to a hyrodistention (something like that) and look for legions to biopsy. He explained several things but I just didn't get it all (he told me I have vulvodynia, pelvic floor syndrome, an autoimmune disease, and he wants to confirm IC with the procedure).

After reading a lot here...it sounds like docs do hydrodistension after they already believe you have IC and the procedure is for something else??

I'm so confused! :hmm: :hmm: :hmm:

I know you smart people can clarify for this for me...and I appreciate your help in advance! :kissing:

Thank G-d for this site!!! :bow:

*hugs*

Ruchily

[patricia1]

Usually the Hydro with Cysto is used to confirm IC. Also some tend to go into remission for a while after having it done. This is why you might see some talking about doing it for their therapy regimine with IC. Personnally I have never benefited from them, other than for my IC diagnoses. Usually an in office cystoscope like you had the first time will not show IC on it. The bladder needs to be distened more than a person can handle awake, this is the reason for sedation. An in office cysto is used to diagnose other bladder condition and to look at the bladder wall. Good luck when you have you hydro done in the OR.. :angel:

[hoping4acure]

Patricia is correct...most people do the hydro's for a dx and AFTER being Dx'd with IC, some do keep getting them for relief, I am one of those people. The hydro's helped me into remission. :)

Keep reading and researching the boards ;)

[Ruchily]

So I AM feeling better from the diet (well...not eating much more than bread...food hurts :() and I'm on prelief and chondritin and something as well as baking soda in my water (my PH went from a 5 to an 8!) and I'm feeling much better (still can't sleep lying down all the way...sleeping with my legs up) but I am thankful I can sleep and that the pain is WAY better than it was!

So now my question is: What are the complications from the surgery? I mean...I've read on the boards of people getting infected (do they mean a UTI from the procedure...what kind of infection?)

What are the possibilities? Hubby asked and well...I didn't know what to say? Obviously I will ask my doc but I wanted to hear from all of you too.

I am learning sooo much thank G-d for these boards :angel: :kissing: :grouphug:

Love,

Ruchily

[vm]

Basically, any time we are catheterized (which we obviously are during the cysto and cysto w/ hydro) the risk of infection goes way up. You're introducing a foreign object into the urethra so there is more of a chance of bacteria getting introduced along with the object! LOL

Many doctors will actually prescribe an antibiotic for a few days after the procedure to try to prevent infection. Mine did and then I still got a UTI! :lmao:

[tigger_gal]

Kim, good answer, I always got an iv bag of antis when I went in for a hydro, and an rx for antis' and pain pills. you will hurt a few days after the hydro. Hope all goes well and keep us posted.

[Ruchily]

Thank you SO MUCH for the responses :kissing: :love:

So the only possibility for complications is infection? What can the infections cause? I already know blood with urination and pain are two things. Anything else?

If the IC diet/prelief/tums are helping...does this guarantee it's IC? :hmm:

I'm just not sure about having surgery that can cause as much pain as I've read it can on the boards. I'm wondering if the potassium test (what's that called) the doc mentioned is as effective for a Dx of IC?

Thank you again for the info. and answers and love...you are so sweet! *mwah*

*hugs*

Ruchily

[tigger_gal]

I would have a million hydros (and I don't do well with them) before I had one potassium test. I have heard they are very painful.. From what I understand a normal bladder can react to a potassium test. You don't want to get a false postive. The infection you may get from the hydro is a uti. The meds you are taking and helping dose not guarantee you have IC. The only way to find out for sure is by testing.

[Ruchily]

I must say this is very sad news :bonk: :bonk: :bonk:

I was hoping the potassium test would help so I wouldn't have to have the procedure. :headbang:

What else could the prelief, etc. be helping? (It makes my IBS worse...)

Well...I have to thank you for being so honest with me! That's what a real friend does....tell it like it is! :angel:

Still trying to decide whether or not to keep my Jan 26th date. I gotta be honest...I'm terrified! But I think it is the best thing to do it sounds like.

Do you know what else can happen from the UTI? Is it just a lot of pain and blood in the urine? Can the infection spread throughout your body? Or is just around the bladder area? Sorr for all the questions...I just want to make sure I'm fully aware of what I'm making a decision about. Thanks :kissing:

*Deep breath* Feel the fear and do it anyway, right?? :grouphug:

[tigger_gal]

ask away tha is why we are here. They will give you anti's I never got an infection from a hydro, you will be fine, you may not even hurt, and it will help greatly. My mom use to get them all the time and they helped her greatly, and Donna, she has them and they help her greatly. There are many gals in here that use a hydro for treatment.. hey whats a week or 2 worth of pain for 3 to 6 months or longer of relief? ;) I honestly believe that doing the hydro is a more accurate test to prove IC. Keep you Jan 26th app.
I don't think any thing else can happen from a uti. it is just pain, and may not have blood, and possible a strong order from the urin. Ask them to give you percausionary meds. the infection cannot spread thru out your body.

[Ruchily]

I just cannot thank you enough! :kissing:

I am feeling more reassured about the surgery. Still quite nervous and will be praying a LOT...but I think I am going to keep my surgery date. *scared*

I'm SO thankful I have a place to come to express my concerns :grouphug: :love:

Oh...one more question if you don't mind. Re. wearing a catheter home...what are the pros/cons in doing so? How does it work? Is it a bag you wear?

You are truly an :angel:

*hugs*

Ruchily

[tigger_gal]

well you just hit me with a question I cannot answer.. I have never cathed at home. If you do self cath your risk of infection goes way up, that I do know. If you mean do you come home from the hospital with a cath after the hydro, the answer would be no.

hope some one can answer your question.

[ICNDonna]

While the cystoscopy with hydrodistention is how most of us were diagnosed, some urologists are willing to make a diagnosis based on symptoms alone. If both you and your doctor are comfortable with that, then I encourage you go to that direction. It does sound like the first doctor at least suspected IC, since Elmiron is not approved for use with any other diagnosis.

I have had well over thirty hydrodistentions in my 31 years with IC and they do help keep my IC under control. There is always some risk with any surgical procedure that requires anesthesia. That's why they monitor patients very closely during the procedure and until the anesthesia wears off.

Sending encouraging hugs,
Donna

[vm]

Some people do just fine with the potassium sensitivity test. It is said to be uncomfortable when the solution is instilled, but then they instill a rescue instillation of sorts to take away the discomfort. That said, it does send some people into a flare, but others say they were fine. It's another one of those things with IC that can be so highly individual.

Some people who have hydrodistensions have an awful recovery pain-wise, flare-wise. I think most of us have pretty typical recoveries, though. I did get an infection, but they caught it and I took antibiotics and that was that. I was in a flare for a couple of weeks, probably, but after that just went back to how I was feeling before.

Some people feel MUCH better after the initial period of recovery after a hydrodistension. I was not one of those lucky ones and yet I would still have another hydrodistension if there was a need. I can't imagine there being a need for me in the near future at all, but I'd be willing. It wasn't awful. :)

[pomeranianic]

The only test the doctor has done on me is the potassium test. It didnt show anything. The doctor said he still belives I have ic. i know I do.
should I ask him to do the Cystoscopy/Hydrodistension?
He just gave me elmiron, and I have my DMSO's done weekly.