What kind of surgery are you going in for?

he is doing a laporoscopy and scraping or I guess cutting the sores inside my bladder out and also the endo. lesions and they are doing a cystoscopy.....the thing I am nervous over is the removing of the sores in my bladder....plus he is wanting to make sure there is nothing else going on....

so he is going to scrape the sores off and leave more sores ? sounds as though that would be more painful than the IC. do your homework first.

I've never heard of scraping the sores off the inside of the bladder... That sounds really fishy. Make sure you ask tons of questions! I thought I understood IC as being a thinning of the lining of the bladder causing a higher sensitivity to acidity, etc. I know with IC can cause sores, but I imagine scraping them off would just cause more problems/more thinning... maybe I'm wrong!

Definitely do your research and try and find out more from your doctor!

Cancel it! Don't do it! I had surgery for endo and I had relief for 9 months. Then it all grew back. Plus, the laparoscopy ended up leaving scars on my urinary tract which lead to 3 years of intractable IC pain.
I wish I never had that laparoscopy. I had a 2nd one too and all it did was diagnose the IC.
Now that I'm finally in remission from the IC (I lost everything, though) I keep abreast of any advances made in the tx of this miserable condition. I know you're desperate and writhing in pain but run from this doctor! Try to get into pain management instead.
Check out UroToday; they've got the latest in research.
Let me know what happens. And if this doctor won't give you anything for the pain if you refuse surgery or say you want to wait, dump him.
-Gloria

I have been reading online about the surgery, they use a laser to remove the sores and once removed that leaves new healthy tissue....there are still a lot of risks, they may come back, kinda like endo, and it may not even help, but right now I am desperate, plus when I spoke with them yesterday over prices she told me the doctor is wanting it done ASAP to make sure there is not more going on.....It will be awhile before I have the money, so I may change my mind by then....but I really want to make sure there is not something else going on, esp. since my bladder is leaking and I am constantly peeing on myself.......Wish me luck! I will keep everyone posted....Thank you so much for your advice......

How's the pain level?
-G

right now not too bad.....so long as I do not stand for too long....hoping for a decent day.....

I had a cystoscopy done just to confirm that it was IC and the doc did biopsies to make sure it wasn't cancer since I had and still have a large amount of blood in my urine. For me, I'm glad I at least had that done so that I know for sure it isn't cancer. I've never heard of actually treating the sores. As far as I understand, the IC comes from an auto immune issue so it will always come back. After having many surgeries and surgeries to remove adhesions, I would seriously question anything more invasive than biopsies.

IC always comes back? Does anyone know how long an average remission lasts?
Kendra, good to hear the pain is tolerable; you can eat, right? I'm still concerned over what those doctors told you. Not that I'm questioning your judgement....so little is known about treating this miserable condition, I worry the docs are like a bunch of mad scientists, eager to experiment so they can be the first to publish results. This one nut kept trying to talk me into sacral nerve stimulator implanted in my spine to block pain. I asked if I could get hydrocodone to help with the pain NOW and he treated me like a junkie.
I've lost a lot of trust in doctors.

Hi Ladies,

I was also treated like a junkie by my last pain management doctor. He suggested immediately that I had a nerve block in my back to get rid of the pain. Then, he walked out of the room, without explaining anything. I had so many questions and they were never answered. So, I did my own research and didn't like the side effects or the possible damage that it could do overall so I decided against it. Then, I went in for a 2nd appt. and the doctor yelled at me, saying that he knew what was best for me and treated me like a drug addict for asking for pain pills. No patient should ever be treated like this so I filed a formal complaint against him and I'm in the process of filing a complaint through the Medical Board. Sometimes, doctors are looking for an easy way to make fast money, especially since a lot of different treatments could work for patients with IC. I've never heard of surgery being a good possibility for IC. My urologist said there is a 50/50 chance that surgery could help or make things worse. I decided to stick with taking Elmiron and I seem to be getting better.

Kendra, what kind of other treatments have you tried? I hope that you are able to find a good treatment plan, whether it be surgery or not. Please keep us posted. Have a good day.

Laura

I have been on Elmiron for months, plus all the bladder pills, muscle relaxers, all of it ....plus I have been getting the heperon cocktails and the injections where they fill my bladder with meds....and I have been doing physical therapy for months now too....none of it seems to be helping.....my therapist also feels the surgery will be good even if it does not help pain wise at least I will finally have answers, and will know there is nothing more serious going on, and I have been doing a lot of research and with removing the sores it is like when they remove endo only this will be in my bladder....I go the 16th for my preop and that is when I will find out all the details....I know there are crack doctors my gyno was one, but this doctor is diff. he actually listens to me and he has been really great and I really feel like he is looking out for my well being and what will be best in the long run....he is the only doctor I have seen that when I hurt while he examines me or when I cringe cause of the catheter he apologizes for me hurting....he is very sincere....I will deff. keep you all updated and thanks so much to all of you for the advice thoughts and everything else.....Hugs to you all!

I really hope you find relief. I can't take the IC meds because of liver disease so all I have for relief is pain medication yet I'm still treated like an addict mainly when I have to go to the ER and they have no idea of my history and the give me those looks and I've even over heard nurses talking about me. I want to try the distillation treatments but I can't find a doc who will do it because of the risk to my liver. It's always a choice. Take care of my liver or my bladder. The foods that are allowed with IC are not allowed with liver disease and vice versa. After my last flare up, I decided to try to get the treatment on my bladder since the liver is shot anyway. Also, I was told that IC is auto immune. Like lupus but it targets the bladder and as long as your immune system is wacky it will just keep up the inflammation in your bladder. That's why there is no "cure".

Perhaps those "sores" you are speaking of is Endo of the bladder? They are doing a biopsy correct?

Hi,
I had numerous DMSO installations and they were awful. I went to work after one and they sent me home because I "stank". It gives off a strong garlicky smell and right after, it feels like a urinary tract infection. Once I peed my pants on the train. So embarrassing. I did so many of them and in the end, I got only two weeks of relief.

It's so frustrating when people call you a junkie because, god forbid, you want at least a few hours without pain. They just don't get it. I'm so scared the IC will return. I've been in remission since November and no one will give me pain meds the next time around because I became psychotic from oxycodone the last time. Hallucinations, delusions, tremors, seizures....the Chronic Pain Support Group on this site is very helpful.

I'm going to look up info about IC surgery. I also was begging the urogyneocologist for it, but he said it would just be a diagnostic thing.

Hang in there,
Gloria