Surgery: Burning of Ulcerations, Botox Injections, & Numbing of Bladder

[Dolphjoy]

Hi,

So far, my uro-gyn doc hasn't found much that helps me. The last thing we tried was Botox injections in the pelvic muscles. They worked for a short time, but now I'm back to the same pain level or worse. Also, I've been fighting a UTI on and off since I came back from Hawaii (where I was hospitalized for 5 days with a bacteria infection).

Now, I've been started on Elmiron...but the pain persists.

The doc hasn't really treated my IC til now...

Here's the next plan...

1) Botox injections in pelvic muscle again
2) looking into bladder again and seeing if there are ulcerations
(he saw numerous ulcerations the first time he looked)
3) if there are ulcers, he's going to burn them off
4) last, put in some anethestic something by catheter to numb the bladder

This will be under general anesthesia.

Has anyone had any part or all of these? What was it like? Should I be worried about pain control afterwards?

Thanks

[charmedx3]

hey stephanie!
how are you??? I an not good! pain is bad will get hold of dr tomorrow. I would consider taking a few days off after they do all of the procedure so that you can rest. If you want to talk call me thursday, cell will be the better ! I need to call my pain doc and let him now what is going on! I have another appt. with rudnick on the 24th! I wil talk to him. feel better soon! m

[ICNDonna]

I've never had botox, but have had the other three you mention, along with hydrodistention. You should probably ask for pain meds for the first few days. You may not need them, but it's far better to have them sitting on a shelf than to need something and not have it. Hydrodistentions have helped me live a normal life.

Sending healing thoughts,
Donna

[Briza]

Hi,

So far, my uro-gyn doc hasn't found much that helps me. The last thing we tried was Botox injections in the pelvic muscles. They worked for a short time, but now I'm back to the same pain level or worse. Also, I've been fighting a UTI on and off since I came back from Hawaii (where I was hospitalized for 5 days with a bacteria infection).

Now, I've been started on Elmiron...but the pain persists.

The doc hasn't really treated my IC til now...

Here's the next plan...

1) Botox injections in pelvic muscle again
2) looking into bladder again and seeing if there are ulcerations
(he saw numerous ulcerations the first time he looked)
3) if there are ulcers, he's going to burn them off
4) last, put in some anethestic something by catheter to numb the bladder

This will be under general anesthesia.

Has anyone had any part or all of these? What was it like? Should I be worried about pain control afterwards?

Thanks
I have had 2 & 3. I also had ulcers that were burned off. Before that procedure I would get sharp stabbing bend over and die pains, but after having the ulcers removed I have not gotten that type of pain anymore...but the procedure did not help any of my other symptoms of pain, burning, frequency, urgency,etc.
After this procedure you should plan for at minimum 3-4 days of rest...others may need a week or two or more to fully recover. Hopefully it won't take you that long:)
I personally would want to be assured that I received pain meds afterwards, as well as post op antibiotics and Pyridium, Urelle, Prosed DS...at least one of that type of med to help with post op burning and spasms.
Voiding after this procedure can be exceptionallly painful...from my experience I would want to be sent home on a small cath and leg bag to give the bladder a rest...I had retention problems after my cysto/hydo/biopsies, so a cath and leg bag for a few days would be something that I would request. Just my experience...probably not necessary for everyone.
If you've never had bladder biopsies done, then this would be a good time to have your dr take them, since you will be knocked out. Also, if you want your own copy of your bladder pix, remind remind remind the dr and nurses that you would like a copy, otherwise they will most likely make only one copy for your file.
Best wishes...hope all goes smoothly,Bri:)

[Kara29]

I've had all of these. For some patients this can be a very effective course of treatment. It sounds like your Doctor has a good plan ahead for you and that is half the battle with IC, is finding a good Doctor who cares.

Well Wishes for your next plan,

Kara:smile tee

[Dolphjoy]

Hi, guys....

Thanks for your experiences, advice, suggestions.

I made a list of questions and e mailed them to my doc. He pretty much said no to everything. I asked him for a possible overnight stay as I live by myself and have a hard time after surgeries, in general. He told me that b/c I was going to be the first surgery of the day, I wouldn't need an overnight stay.

Now, I might not be thinking straight but I am pretty sure that no matter what time the surgery would be, I still live alone. Unless he or someone else knows something I don't know. I always thought that if one lives alone, they usually stay living alone unless they give someone permission to live with them? :hi:

He also said it would be a 2-3 day recovery period. I am glad someone told me to find out. I am hoping for a Thursday or Friday so I can have the weekend to recuperate instead of taking more days off work.

Anyway, if anyone has more suggestions, I would sure appreciate it.

Thanks!

[Kara29]

Unfortunately,

every doctor and hospital is different on policies of overnight stays. My Doctor and the Hospital he operates on lets people stay the night (a 23 hour stay) if they live an hour away and longer. I live an hour away, so I have the fortune to stay over in case problems arise and to help pain control.

Warm Hugs and Well Wishes,

Kara

[charmedx3]

Hey Stephanie! Remember I Am Here If You Need Help. I Am Off This Weekend. My Pain Management Has Me On Fentynal (?) Patch. I Will Talk To You Soon! M

[Dolphjoy]

Hi guys..

I finally have a surgery date. It is on Friday, November 7, 2008. I have my pre-op with the uro-gyn on Monday, Nov. 3rd.

I'm still trying to ask my uro to allow me to stay overnight.

Since there is only 1 day before Veteran's Day (school holiday), I've decided I'm going to take 2 days, the day of surgery and Monday. That will give me 4 days to recover and get back to work.

Please keep in prayers.

Thanks!
Stephanie

[Kara29]

We will keep you in our prayers as you go into surgery!

Warm Hugs,

Kara

[Dolphjoy]

Hi everyone..

Tomorrow is the big day of the surgery. I'm so nervous I got up at 1 a.m. and started laundry.

I sure could use some support.

I am going in a 5:45 a.m.

Thanks

[Dolphjoy]

Hi guys...

I had my surgery today! Pre-op was at 5:45 a.m. and I didn't get admitted until 6:30 a.m.

The IV was good - only 1 try this time. I got anxiety meds for once!

I had the general anethesia that had only intubated me part way.

I woke up in extreme pain! Was given pain meds.

Then, the nurse started to be rude and try to wake me up rudely!

She denied me pain meds until I peed! She told me she would not give me any pain meds until I could pee on my own!

I have never ever heard of that before! My friend was no where to be found and I was crying because of the amount of pain I was in.

She also wouldn't take me to the bathroom until I believed I could walk there from the gurney outside the bathroom! I had never ever had this happen before in my life!

I started sobbing even more. Then, the nurse passed me onto the CMA to deal with me. I begged for a cath, I begged for pain meds. I felt like I was treated as a drug addict who only wanted meds!

Then, they made me sit on the toilet until I could pee - and it was in dribbles and pain the entire time.

Then, she would only give me 1 more dose of pain meds and anti-nausea meds. I came home in extreme pain.

Then, I called my social worker from the chronic pain clinic who tried to track down the clinical pharmacist. The clinical pharmacist's answer to my question of whether or not it was alright for me to take Ms Contin and then my Dilaudid went unanswered. Her reason for this was I hadn't listened to her messages that she left in the morning. Hello! I did notify my social worker that I was going to be in surgery or in recovery - of which both places, I would not be able to answer!

When I got home, I did listen to the message on my landline and called her back and left a message in regards to my response. I told her I would be home and left my phone number and MR#. But, because I didn't answer her specific question about what time to call back, she refused to talk to me.

This was it! It was the tip of the iceberg! I ended up sobbing again and told my social worker that I felt that I was not being supported, especially with the Recovery Nurse treating me as if all I wanted was pain meds and nothing else.

I need help to know what to do next. I live alone. I have to take care of myself alone.

I don't tell my parents about the IC b/c they just don't understand!

I was trying to sell my car and my parents were getting upset that I wouldn't drive to school to have that person sign a piece of paper. I trust this person and just told my parents I took meds in which I can't drive.

I really had a rough day and don't appreciate being treated as if I am an addict!

Doesn't anyone understand!

Thanks for listening, guys..

Stephanie

[Briza]

Sending (((hugs))) your way. I'm sorry you were treated so badly post op. After my hydro I had horrid post op care, so I really do understand. My pain was also terrible and was not treated adequately. I'm sorry you're alone having to deal with this. Is there at least someone you can call to talk to tonight on the phone and have them come by in the morning to check on you? If not, and if anything starts to go wrong, like retention or extreme pain, please do not hesitate to call for an ambulance to take you to the ER.
Best wishes....please keep us posted! :grouphug: Bri If you feel you need to take your dilaudid or ms contin and are not getting a repsonse from your pain dr, you should be able to get in touch w/ the pain dr's or your uro's answering service and if they do not return your call promptly you could also put in a call to your pharmacy...if yours isn't open then try calling one that stays open late or 24 hrs and ask to speak to a pharmacist. If it were me, I'd be taking my pain meds, pyridium, etc.

[SharonA]

I am so very sorry you were treated so badly. There really is no excuse for people in the business of helping sick people to treat someone like you were treated. No excuse at all.

I hope you are feeling better tomorrow. (((Hugs)))