I have had IC for nearly 30 years. I've had every treatment that they do and now after my son who is a PA found me a good Urologist, I am considering getting an InterStem. The Mayo Clinic wanted to do it when they were in trials but I was so tired at that point of being used as an experiment. So I urinate on a good day every hour to 45 minutes. I have learned to live with it except when I have terrible flare ups. Then I want to die! I went from being an athlete to not even liking to get very far from my house because of this disease. It is complicated and I hate seeing a young lady like you having to deal with it. I never pray for me without praying for every person who is afflicted with IC. I hope the InterStem helps me. I can't tell you how blessed I would feel to be able to travel again without so much anxiety. I pray you! May you find something to help you:)
I'm sorry to hear it hasn't worked for you so far. I am in the trial phase day 2 (and i agree it is painful... i'm skinny too and it hurt when they went into the nerve didnt give me enough lidocaine) and so far not sure that i notice much difference. I'm also using it for IC which i have had for over 20 years with no relief other than from mmj but like you i can't work because of IC and am hoping the interstim will enable me to go back to work. I hope you find some relief, and thanks for sharing your story.
I'm sorry what you are going through honey ! stay strong and hopeful ! I also find myself mad and frustraded at my own body for doing this to me.. I'm 19 years old with an over reactive bladder .. used to go to the restroom every 15 minutes and now 40 minutes with prescription from my urologist ... Yet, my quality of life has definitely decreased since this happen to me. I had to stop going to college, don't feel comfortable around public areas, always looking for the nearest restroom, always aware where the restrooms are. Life is complicated but I can tell you are a strong woman who has accepted this and fights everyday for a better tommorow. Wish you the best and pray that someday you can find something that helps you out ! look into Dr. Anthony Atala regenerative medicine.. much love. Thanks for sharing your experience!
arizbeth flores im 39 years old and i just start the trial period. im sorry to listen u go bathroom every 40 minutes. i going every 1:30_2:00 and is a sacrifice. my quality of life is terrible i had to do something. did you tryed botox? i think in your case medication isnt work good. ask your doctor for botox or neuroestimulation. ah And in my case i havê a neurological disease Call syringomyelia Thats probably is the cause Of my Bladder disfunction. sometimes is Good the urologist check the cause Of it. Be Strong! God bless you
Denise Aparecida Silva Louis Thanks Honey ! ❤ Although this affected my life very much I have accepted my body and I am trying to enjoy life even with my condition ! and yes, 4 weeks ago I started my neuromodulation with my urologist and now i can last up to 1 hour and 20 minutes ! I have improved alot in over a year and I did talk to my urologist about botox because I was aware of it and he responded by saying botox would be my last option if nothing else happens to work out for me !
Sounds a bit devastating to go through all this, and not have success. I am going to have Intrastim, and my Urologist suggested I also get a pessary. If Interstim doesn't make that much of a difference I can also have bladder botox as well. Hopefully, between the three I should get some relief. Such a frustrating problem to deal with, especially the humiliation of having 'accidents,' and being stressed when out in public, not to mention all the additonal laundry every day! Thank you for sharing your experience, it is helpful to know what to expect.
You mentioned that it worked for a while, then it stopped working. My doctor told me that, sometimes the wires move, and that would manifest as the implant not working.
Thank you for your story. I am thinking of getting the interstim, but first am going to try botox. I totally related to your story about how hard it is to hard with IC. I have just filed for social security benefits after being off work for 1 year and in terrible pain. I had IC for over 10 years. Good luck in your journey.
I can't believe your trial only lasted three days. Yes, my stim started working before I left the hospital doors, but I realize that doesn't happen often and people need way more time with it. When are you getting it removed then if it's not working? Do you assume that it must be your muscle in the bladder than in the brain because that's how they explained it to me if it did no work? My stim has worked wonders! I still have a bad day every once in a while, but it was SOOOO worth getting for me!
Just had my trial yesterday and the numbing hurts like hell... Even After numbing my left side as he was entering hurted like crap which is the side we ended up doing for first two days . Day two now after it being placed wires trials. Little discomfort after raising numbers up . I went from a 2.9 to a 6.1 which was needed . Was going still every hour after on a 2 .. now seem sleep all night no wake up or sudden urges on this setting. But when on this setting you feel throbbing which goes away began fell like your heart beat you don't know it's thumping. Really helping. But in office trial I cried it hurted numbing and that left side. A lady before me came out told me it was going to be alright ..shhhh b.s it was but still .. but in end it's worth what I was going through if it as serious as you claim. Suck it up go for it. We have had worse member an epidural well there you go ,
I meant to ask what your setting is on. My rep told me she absolutely did not want me to feel it. She said it's totally different from the trial cos during it she wanted me to feel it. I'm proud of my scar too, and yes, mine still hurts and is sensitive as well!! I HATE THAT PART! Sensitivity with the incision sucks...
Do you still have the interstim? I have one for IC and I cannot stand it!!!!! I am getting it out in 2 weeks. I have had it a year and a half and never liked it. In the beginning I thought it might be better when it healed. It was the worst!!!!!! I would never recommend it. In so much pain now in my bladder and my back now.
Well, my trial did not go well at all. The leads migrated and instead of having it in for 2 days, I went back in and had the doctor tape the leads down again. No success. It was the holiday weekend and I was told to take the leads out myself. First of all, I have arthritis in my Sacral Iliac joints, so those needles hurt like h@ll and still do 3 days later. My trial was such a mess that I will never try the Interstim again. More power to the people it helps but it did nothing but cause pain for me and my legs still feel like electricity is running through them. 😢
I have this issue too..but I’m 68… I was told bladder issues come with MS…you need to see a specialist..check it out…I’ve been told I have MS I have many of the issues..
Anyone (male) having needling pain at the tip of penis whenever there is a bladder spasm? If yes, any effective treatment that helps??? PLEASE RESPOND. THANKS
I have went through a interstim trial for 7 days for fecal incontinent and I didn't use the bathroom for 6 days as well I found it was shocking me down my leg, feet, and groin. I decide to get it token out but once I got it token out that when I found out if you had this problem for awhile it may not work and they may have put it in the wrong place. My dr wanted to go in correct it or give it 7 more days and I told them No.
So far it seems to work for me. I am going to be patient because i have no alternative to a better quality of life. I was so miserable, Didnt want to go anywhere. without carrying loads of toitetries and cloths and clothes. I am good
I'm going to continue to try the different programs. My setting is 1.5 at the moment. I just don't see this process becoming better so after a few more tries I may request removal.
I am with you there. Thumbs down. I had to have mine removed, because it just stopped working. It went hay wire one day. I went back to the doctor and the leads had stopped working.
