Had procedure done today

[Trac348]

I had already been diagnosed with IC from a biopsy done a year ago. Today I had my first hydro distention. I had 2 previous Cysto with out distention. It went well some burning after, but not that bad. I have been hurting pretty much everyday for almost 2 years now. I have had many tests to rule other things out. Today she said my bladder looked okay with some glomerations, but no ulcers. She didn’t stay very long and I plan to call her tomorrow to ask some questions. Since it looked okay I wonder if the IC is the reason for my pain. She said if it is a flare the distention should help. I am scared it won’t help because nothing else has so far.

I just want to find out why I hurt and fix it as I am sure many of you feel the same way.

I have a referral to a pain clinic. I don’t know what they will do since I have had the distention. I don’t know how that works. I have never been to a pain clinic before.

I am still having some pain on my left side (which is where I normally have it). Is the distention supposed to work immediately or it takes a while for it to work. I am hoping and praying the hydro will work and I won’t need a next step, because I am unsure what the next step is.
I also wanted to ask the doctor since my bladder looked okay today wills she want me to stay on the meds she put me on. She also put me on Puridium (sorry spelling) today.

Thanks for listening, Tracie

I edited this post. I am sorry I rambled on before I had just gotten home from the hospital and had a lot of worry on my mind. I apologize for the long post.

[sueque]

Tracie-
I haven't had my hydro/distention yet (scheduled for Jan), but I do understand exactly how you feel. It's interesting that you mention the left side pain-I have exactly the same thing!

I had an in office cystoscopy on Friday, and haven't felt the same since. I am scared that the hydro will be just as painful but will show no results. I have expressed to my dr that after all this pain (for a year) that I'm going to be told that there is nothing wrong with me.

Anyways, I know I have no helpful advice, just wanted you to know that I understand.

Take care-

Susan

[Trac348]

Susan thank you. Even though I dont want anyone to have this pain. It is good to feel like your not alone in this.
If you need talk send me a PM.
Thank you for your understanding, Tracie

[Babs RN]

Hi--
So you got to have the IC fun today. Don't be surprised if you feel pain for a few days, that's normal. I actually do get some relief from distentions. Referrals to pain clinics are also helpful. They tend to be far more willing in writing for the stronger pain meds. If I can help you in anyway, please let me know.
Hugs,
Barb :grouphug:

[Babs RN]

PS Where are you in Georgia? My bro lives in Covington and is a state trooper.

[Prissie]

Barb, such a small world! I live in Conyers. Only a few minutes from Covington!

[Trac348]

I live in Douglasville. I thinks its about an hour or so away from Covington.
Thank you Tracie

[ICNDonna]

I'm one who is helped by hydrodistentions. One thing to remember is that a hydro is a surgical procedure and you will need some recovery time. In my own case, I usually feel better the day after the procedure than I did the day before, but it takes a couple of weeks to be completely back to normal. And some have reported that it can take several weeks.

Hang in there.

Warm hugs,
Donna

[Hope]

I just had the one distension with the cysto. What I remember is it took 2 or 3 days to feel better. Then gradually, over a week or two, I felt great. I am told that is from the distension. A really nice remission followed which lasted about 5 or 6 months. Then I started the elmiron and things improved a lot. Hope you feel better soon. Take it easy for the next few days.

[mela414]

Tracie,
I hope this hydro give you the relief that you need. try to rest as much as you can.
Hang in there :)

[jax]

i haven't had a cytoscopy yet and i am TERRIFIED because of how much pain i have while urinating...the urologist recommened that i be under anesth. while he does it. i'm guess you were awake, did it hurt, does it hurt really bad afterwards?

i hope you feel better and they find something out soon for you.

[Trac348]

I was asleep when they done it. it did hurt some, but they helped me with pain medicine. Try not to be scared. I felt that if it could releave my pain I had to at least try. Thank you everyone for your kind words, Tracie

[bellaluna05]

Hi I hope you are feeling much better! If you have read my post "be careful what doctor you let do this" you will know that I have had a horrible time with cystoscopys/hydro's. so about that all I can say is please make sure you really trust your doctor and that your doctor really knows your personal situation and that they really know what they are doing. If you do then, from what I have heard and seen on this site they can really help some people.
Anyway I just wanted to respond to something else you said, about your bladder looking fine and maybe it isn't IC then. When I was first diagnosed my bladder was filled with ulcers and pin point hemorages, so I was told, then all of the sudden this last year my bladder only showed a little visible damage. I was told that the IC doesn't always show on the bladder wall that it can be hideing inside the tissue. I guess now mine is mostly inside the tissue, but it is worse than ever :( So even if it doesn't show with the hunners ulcers and the other stuff you can still have IC at any stage. I have to have mine along with my urethra removed in a month because it is so bad. I don't want to scare anyone though, I just know it is extremely frustraiting to be told your bladder looks fine and you don't have IC when your pain and other symptoms say otherwise. If you or your doctor still think something else other than IC is hurting you, you might want to look into Fibromyalgia and thyroid disease, both of these can feel a lot like IC, there are probably other possibilities too, like endo. Only you and a doctor you really trust can figure this out though, but it never hurts to look into it.
You are in my prayers!! I wish you the best of luck and that something helps you really soon!
Lara

[Trac348]

Lara, thank you for the prayers and your kind words. I had a hysterectomy in Sept so I know it is'nt from endo. I have not had the other things tested though. I was diagnosed with IC from a biopsy that came back that I had it. This time she said that there was some inflammation, but no ulcers. I was just wondering if I don’t have the ulcers, could the IC be the reason I hurt on my left side. I thought having the ulcers was the reason for the pain. Since I don’t have them I am confused as the pain. This is such a confusing thing. Thank you again Tracie

[bellaluna05]

Tracie,
unfortunately there are so many theorys for what causes the pain, but it is definitly not just ulcers. there could be more inflamation inside the tissue of your bladder on that side maybe. I am not sure, and I am not a doctor so I probably shouldn't make guesses. It is hard not to though when you want to help someone. You should definitly keep looking for other possible causes for your pain, just in case it is something that could be fixed. Never stop looking! I understand what you are going through, everyone here does. We are all desperate for the answers, it is so very hard. We have to blindly follow the advice of our doctors because what else can we do, but I say blindly because nobody, even the best doctors completely understand this horrible and complex disease.
I do know that it could still be your IC that is causeing the pain on your left side, even without the ulcers. There are so many ICers that don't have the ulcers and have horrible pain ether all over their entire bladder or just in one spot or side. I used to have the ulcers tons of them, but last I was told I only had one or two at the bottom of my bladder, and my bladder is so much worse now.I think I already told you but I have to have my bladder removed along with my urethra in a month, it is so bad now. It is so confusing! I wish they would figure this horrible monster out soon. It kills me that there are so many of us suffering to no end with this, and nothing ever gets done! It is a true crime. I am praying for all of you ! Feel better Tracie!
Lara

[mela414]

Tracie,
I don't have ulcers either but have suffered with bladder problems my entire life. As an adult, they too treated me for endo and I eventually had a hysterectomy. they even convinced me that it could be adenomyosis before they took my uterus out. For the record, all my pathology reports were negative for endo ...even the uterus.... so I am not covinced I even had it.....but that's another story. Anway, I still continue with pelvic and bladder pain. I recently did a hydro/cysto which confirmed that I have petecchiae all over my bladder. As a child they told me I had "cracks" in my bladder lining. I'm sure it has gotten wore over the years where the pain was intermittent it is now constant adn I am affects so much more easily by foods and additives.
I'm sure your pain is real and yes you can definately have pain without the ulcers. My pain is usually lower but maybe you have more inflamation on the left side that is causing you pain.
Email me if you ever want to vent or dicuss anything. Feel better..:)

[Trac348]

The doctor called back today with the biopsy results. No Cancer (thank goodness), but positive for IC, even though I took her the results from the other doctor. I guess she wanted to have her own results. They made me another appointment for Wednesday to discuss my options (their words). I am on the IC meds now I don’t know what options she could be referring to. I am still hurting although I can tell a little difference. I am hoping that it is something that will just have to take time. I am interested to see what she has to say now that she has her own results to look at.
Anyone have an idea as to what options she means? Thanks Tracie

[Debgail]

((((((Tracie))))) Take your time and get some rest...like Donna said it usually takes a couple of weeks before you are back to normal. I really do hope that you get relief from your hydro ...it make take a bit for you to see how much they help. I tell ya, I would have them again and again...like Donna since my first 1 in Feb helped me more than I can say. I also had about 60 inflamatory polyps removed at the bladder neck and I KNOW getting rid of those has helped abunch too.

I hope everything goes well with your doc appoint. It sounds like they are taking you seriously and are going to make sure that your ic is managed with all the right meds.I think I read that you are on elavil, atarax and elmiron....all excellent first line defences for ic. I hpoe that you wont require instils ...but if you do know that there are so many good ones out there and that they help alot too. There ae several people who instil weekly here and dixiefireball does them daily...so she can help you too.

I hope you have relief from your pain and you heal quickly!

Big Hugs, Debbie

[nccarol]

:) I will be going for another hydro after holidays. I did best when I stayed overnite with the cath in and meds for spasms mostly and pain meds if needed. It made all the difference in the world from when I had my first one and was sent right home. That is the only way my doctor will do it so I am not as scared this time around. Good luck and just take it easy afterwards. Mine took awhile to show results but then had some remission I felt almost normal. It is always there but when it gets harder to tolerate I opt for the distention. I am on pain meds and the prelief which helps tremendously as well as the other as needed treatments Pyridium and Levsin. :toilet:

[tinamarie1990]

This is for Trac348. Could I ask what biopsy you had done? I am having some bladder neck polyps removed and concerned. Thanks for any info! Tina

[Trac348]

They took a biopsy of the bladder lining. I did not have polyps this time. I did have some a few years ago that were take off with my very first cysto. I was not even told that I had the polps until I got my records to take to this specialist and I read about it from his report, Anyway I wish you the best of luck with yours. Tracie

[MarthaB]

:) Tracie, I hope the hydro will help you, it certainly helped me a lot, also I noticed on your post that you take Tramol and zoloft, has your dr ever mentioned to you to be careful taking those 2 meds together?? I don't mean to scare you, but I take the same meds and my dr told me to be very careful, ultram and zoloft can cause convulsions, he said that if my dose on the ultram or zoloft goes up, I will have to discontinue one, I think I will choose to stay on ultram, because of the pain I need them more,... I don't want to scare anybody here, but I feel I should warn people about this, and there is a lot of information about this on the net too,
Take care Martha :)

[Trac348]

No, they have not said anything to me about it. I actually plan to talk about switching it to something else on Monday with doctor, becuase it is not working that well for me. I do notice sometimes my legs will twitch which I even asked my pain doctor about and he was'nt concerned. It freaks me out. I dont know if this is the ultram or if I would do it with any pain med. Is this normal? I was going to post something about it under the pain man forum, but I will go ahead and ask here. Does anyone else notice twitching or jerking with pain meds?
Thanks Tracie
Martha can I ask what dose you take of zoloft and Ultram?

[SusieQ045]

i do, it is scary. when it first started happening to me i would call my boyfriend over to see it and by the time he made it to where i was it would stop. he would look at me kinda funny and say well all i have to do is walk over here and it stops. it happend with pain medication, at least to me. it is scary but my doc said that it is nothing to worry about.

[MarthaB]

:) Tracie, I don't mind at all, I am on 50 mg a day zoloft, and 50 mg twice a day tramal, I do at times take more tramal for the pain , because the dosage the dr prescribed is not enough, I have to tell him about it when I see him next.
To answer your question, no I don't have the twitching problem, could it be because of the tramal and zoloft meds together, you should really speak to your dr about that asap.
I am going to speak to my dr about going off the zoloft, because I found out the reason that zoloft and tramal can cause problems together is that they are both anti depressants, and taking both is like overdosing, I prefer to be on tramal, so I can be on it for my depression, and the pain.
Just google tramal and zoloft, you will find heaps of info!!
Martha