IC and pain management

[green eyed lady]

Hi Everyone.

I've been diagnosed with interstitial cystitis last yr. I had it for about 6 yrs. prior but it went undiagnosed.

Ok...short synopsis. I have been given the medications that are commonly prescribed for IC and they don't seem to be helping. I've also had 3 hydro-distentions and while they worked short term the pain always came back. My new uro tested me with an electronical device...didn't work. So now my uro wants to permantly surgically implant said device thinking this might help! I'm frustrated because I am not convinced this is the way to go.The literature I've read regarding the interstim says that it doesn't help with IC pain.

My new uro wants me to stop taking pain meds because he doesn't want me to become addicted. I do understand. However, when I don't have them I can hardly walk and forget about bending over! I l pretty much stay home and I'm petrified of a bad attack. So my question is...is it better to be dependant or is it better not to be dependant?

Also...if anyone has ever heard of clinical trials for IC please let me know. I'm willing to do what it takes to live normally.

[Imajerk]

Not to intrude but there are some people on FB who have had their bladder removed and swear all their symptoms went away, and they are even going out again.

As IC is different for everyone, I would imagine removal is the same in this case?

Some studies on phantom pains in general say it happens because after so much chronic pain, the body's nerves get accustomed to the reactions produced and no longer can stop. I think the catch 22 is that no one wants to just remove a bladder willy nilly, when one is being diagnosed and having therapies tested, to see if anything less drastic can work. But, OTOH, by the time you've tried everything else and are desperate, you've had the pain for long enough for those nerves to get accustomed to their bad responses; they've become ingrained.

I'm not saying you SHOULD get your bladder removed. Just saying some people out there have had other results, so I don't think anything is 100%.

I wish you the best in finding a road to relief.

[Toomanyadvil]

I'm glad I could help!

Just hang in there, its gonna be a long road unfortunitly.  I too have lost so much. I havent worked in years, my marriage suffers and I have lost many friends who just cany understand why I cant go out all the time. So I'm right there with you.
I agree with you about the implant, leave that as a last option and NEVER get your bladder removed, never.  Its a 100% that you will have ghost pain which means you will then still be taking pain meds for no bladder. My uro has nocked it into my head that removing the bladder causes more problems that IC itself.
I am always around and you can get in touch with me anytime you like.

(((hugs)))

[green eyed lady]

Thank you so much for all your information and advice...you really have no idea how much it means to me to not feel like I'm alone. You have given me some great advice regarding alternatives to the surgically implanted interstem and I plan on making an appointment to discuss them and what might work for me instead of the interstem. I forgot if I mentioned in my previous post but the trial interstem didn't help me at all so for me to have it permanantly installed sounds crazy to me, uro thinks a 30% chance is better than nothing. As far as the diet goes---I know what I can and can't eat and I stick to it because it's sooo not worth it.

This disease has cost me so much....relationships, unable to work and in the begining thinking I was crazy! Ya see, it took about 6 yrs to be properly diagnosed after seeing 4-5 specialists---what a nightmare. But now it's diagnosed and my uro promised me he wouldn't abandon me which gives me comfort. I just don't want to live like this when there is help out there ie: pain medication especially since my other uro would prescribe. My new uro is APPARENTLY the go to guy regarding IC---not quite sure yet because I really loved my other uro. I understand that doctors today are so afraid to prescribe and I can't say I blame them, right? But it is frustrating nontheless. Thank you....

[Toomanyadvil]

I hope you find something that works soon or at least continue to get some relief from the meds!

Be well

[Toomanyadvil]

I have ben suffering with IC for the past 3 or so years although I probably had it for many years before.
I completely understand your frustration and fear of stopping the pain medication.  
The truth is when it comes to IC you need to try all of the options your Uro gives you because IC is soo different for everyone and you never know when something is going to work.  
Have you been following the IC diet making sure you have elimainated everything that could possibly bother or inflame your bladder? With IC even the smallest thing can cause a flare.  
If you arent ready to take a step like surgery you may want to ask your Uro about bladder instalments of Heperin even of Elmiron. There has been alot of success with both of those treatments. Your Uro would do it in office by inserting a cath and injecting(with syringe)either medicine.  You would then try your hardest to hold it for as long as possible and then void.  You would have to go in to get them as much as possible and eventually the Uro would teach you to do them at home. Then you have the option of doing it up to 3 times a day, which is a huge relief for some. The bad news id like oral Elimiron it could take up to 6 months to improve the symptoms.
I have run the gauntlet of treamtments including oral Elmiron which honestly doesnt help as many as they say it does.
IC is a very complex problem because of the other conditions and diseases that can accompany it.  Have you been checked for endometriosis or IBS which can increase your IC pain?
My advice to you is to ty everything your Uro wants.  There are some people with IC who have had to only rely of pain meds, including myself, but if you do not at least give it a shot they may start to think you only want the pain medication and stop prescribing them.
There are no clinical tests going on right now that I know of but you can always check out the Interstitial Cystitis Network on line and they would have more info on that. I havent visited the site in a while.
I really do understand the point you are at.  And I feel for how bad you are suffering right now.
It can be a long process to find out which foods you can tolerate and a treatment that may improve the pain and frequency.  It can drive you crazy and sometimes cause more pain than relief to get the treatments,
You may want to say to your Uro...I am willing to try just about anything, but before I try anthing involving surgery can we try bladder installments with heperin?
It shows you are taking his suggestions seriously but would like to try something a little less drastic first.
You may also want to add that you understand why he wants you off the pain medication and you also want the same thing.  That you will keep trying until thats a possibility. If he or she is anything like my Uro they will hear that you want what he wants and will work with them as much as you can to make that happen. It wont happen over night so you have the pain meds as a back up. If you get them now, They may not take you off when you begin installments. They can be a bit painful and cause spasms in your urethra because of the cath insertion but again even those are different for everyone.
this is turning into a novel so I will cut it short. Bottom line you have to appease your doc when it comes to pain meds.  If he really insists you go off of them, and I mean the above suggestions dont work and he still pressures you to do it,  try, and make it clear that it is not working if your pain is bad.
If you dont go to a pain specialist ask them to refer you.  They may not want to be prescribing and may be okay with soemone else doing it(thats how my Uro feels)
I've packed so much info in here, sorry.
You are welcome to contact me any time. We IC sufferers need to stick together. You'll find there arent many of us. Especially on pain medication...with IC thats not the norm because of how IC is viewed.
That means we have to do everything right in order to keep getting the relief.
But to finally answere your question...If you truely need them it is better to become dependant any day than to sit in bed and lose out on livivng.  And remember dependance isnt addiction
Geez, sorry for my rant.  It's been along time since meeting another person in pain meds who has IC!