What Do You Know About InterStim Therapy Side Effects?

Posted May 21st, 2011 by

Looking for a place to research or share your experiences with InterStim Therapy side effects?  You’ve come to the right place.  At PatientsLikeMe, more than 125,000 patients are sharing their experiences with all types of treatments, including prescription drugs, over-the-counter drugs, supplements and procedures.

Manufactured by Medtronic, the InterStim Therapy System is surgically implanted device designed to help patients reduce the number of urinary and bowel accidents.  It is FDA-approved for patients with urinary or fecal incontinence who have failed to respond to, or could not tolerate, more conservative treatments.  How exactly does it work?  An implanted neurostimulator delivers an electrical pulse to the sacral nerve, which controls the bladder and anal sphincter.  This pulse is sent via a handheld programmer.

During the clinical trial that found InterStim Therapy could reduce bowel accidents by half (and in some patients, restore full continence of bowel movements), reported InterStim Therapy side effects included infection, pain at the site, “pins and needles” and the neurostimulator breaking through the skin.  But what about in the real world?  That’s where PatientsLikeMe comes into play.

According to the six treatment evaluations of InterStim Therapy submitted by PatientsLikeMe members (10 of whom currently report using the device), reported side effects included “bladder problems,” “annoying sensation” and “bowel incontinence.” Three patients rated the side effects as “Mild,” while three others reported no side effects.

Curious to hear more?  Here’s what three patients, all of whom report multiple sclerosis (MS) as their primary condition, had to say in the freeform section of their evaluation:

  • “It has helped me! Aside from the surgery pain and the seizure I endured, I would have it implanted again.”
  • “Taking the InterStim was an act of desperation. I was about twenty when my bladder started to fail. The leaking and frequency still continue to be a problem.”
  • “The impact this device has had on my daily life is incredible. I truly feel this is the best thing I could ever have done for myself and my MS symptoms.”

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225 Comments

  1. Hi,
    Nice blog,useful content.Thanks for sharing experiences in comments section.

  2. Has anyone else had balance issues and loss of core muscles? I had my interstim put in May 4, 2027

  3. Thankful for sharing the inter stem information planning in having the procedure done next month.

  4. Just had stage 1 done yesterday, 21 Mar 2018.
    My issues began years ago but no doctor ever considered it a problem . In 2016 I suffered from diverticulitis-perforated and almost died. Surgery to remove poison, perforated bowel, removal of mass found while exploring, and restructive surgery left me more incontinent and increased my bowel accidents. June of 2017, I had had several serious UTIs and in July 2017 so severe that I ended up in emergency room with UTI that cultured ESBL. While in hospital had trouble emptying my bladder and that my infection was resistant to antibiotics. Very, very sick and dangerous situation. Spent 6 weeks in rehab in which I had two more UTIs. What I remember is that I had to go to bathroom so many times during the night and was having numerous bowel accidents a week. 24 hours after stage 1 procedure and did not have to go once the first night!!!!! Back at work the next day with high hopes! Will try to post again at the end of week one. Best decision I ever made…so far!

  5. I had Interstim implanted Sept 2017. What followed was 36 hours of explosive diarrhea. Has anyone had a problem like this?

  6. I’ve had the bladder control interstim on for almost 9 yrs since then i had right knee total replacement recovery was great with know complication that was 2013, on 2017 i had to get the left leg done 3 months later i was having problem with bending the knee so i had to get a knee manipulation now its going on a year i’m still having complication i guess my question is since the implant affect my left leg could the interstim be the reason why i’m having complication with the leg.

  7. Had 2nd stage done April 4, 2018. Interstim doing what is was designed to do. My only issue was the pain from the surgery. Didn’t really have any relief up to two weeks later. This past weekend was the first where I could turn from side to side without any major pain.

    Marie: Was interested in your post as I had a total left knee replacement last year. Since my interstim I have noticed that my left knee has given me a great deal of issue with feeling stiff and not able to bend it as well. Have you spoken to your doctor regarding this and what did they say? I don’t have another appointment until next month.

  8. I have had my Interstem device for about 9 weeks. The past three weeks I have had sudden and extremely sharp pain in my left middle back that come and go When the pain comes, it is an 8 on a scale of 1-10 and stops me “in my tracks.”

    My interstem device can be turned down to a very comfortable level, then it seems to have a mind of its own and begin pulsing very hard. If I turn down the strength, it is as if it is not on at all. Does anyone else have these issues?

    I was at my urologists office yesterday and spoke to a tech who checked the setting. She said they have never received a complain about sudden pain in the back area I describe.

    Has anyone else experienced this?

    Thank you for any help. I hope to be able to keep this device implanted. Until this unpleasant effect started, I was very pleased.

  9. Within 3 weeks of implant my perfect stool activity became a nightmare. I was lucky to have a movement 3 times a week. It was always hard, bulky and painful to extricate. So compacted that it always the toilet even in public restrooms. I’ve been trying to get it out for over a year and the doctor who implanted it has refused to take it out. The InterStim has stopped annoying frequency of urination, however, it has retained urine to the point where there is no urge to go until all at once there is a deluge that is uncontrollable. Now I am looking for restrooms to prevent raging incontinence. I would NEVER EVER encourage anyone to go with this technique.

  10. JUDY: I’ve had the interstim for almost a year. For the first few months I would have the pain you described. My urologist told me it had nothing to do with the interstim.i still get the pain from time to time.

    Almost a year with absolutely no relief. I had it implanted because I have frequency at night. Trying different frequencies still, but getting up for the bathroom every hour is getting very old. My trial showed about a 75% improvement….wish I could have kept the trial. I’m feeling very discouraged and tired!

  11. I have had my device for 2 years and 2 months and am about to have it totally removed and they are putting a new one in on the other side. I have back issues and it was put in for loss of bladder and bowel control. Bowel problems got better for the most part, bladder was up and down until a couple of months ago. All of a sudden, complete loss of bladder control. I don’t even know when its happening, it just starts on its own and empties itself. I hope this new one they put in does better. Its really embarrassing to have to use diapers to keep from humiliating yourself at work or even at home. And like others, the back pain became worse almost instantly. Mine was turned as high as it could go and it ran it down in only 2 years.

  12. I got my bladder pacemaker in 2015 and got an infection at the incision site, my urgency is worse!! Is it too late to file a lawsuit??

  13. I had my device taken out after 8 years of having it . The battery died 2 years ago. Symptoms are gone. The lead broke off during surgery. The Dr. said it’s better to just leave it in. Is there any risk of it migrating or fragmenting in to pieces in my Sacrum?

  14. I’m on faze 1. First week was very constipated. So I took Miralax. I’m also lactaid intolerant. I had dairy for Mother’s Day weekend, & have been having FI ever since. This Thursday is faze 2. I have called my doctor but they don’t respond with an answer for me. Has anyone had this problem?

  15. Hi, I have MS and have had an interstim for 7 years. Does not really work. Have had it off for a while. anyway the dr said that they have new placement on different nerves that will give me more success I just wonder if anyone else had had this or if the new nerves they found to connect to will cause incontinence? I use catheters now and am getting infections so want to try to stop using a catheter but don’t want to start wearing diapers either.

  16. I had my implant done in 2010 The battery died 2 years ago 2016 I requested to have the implant removed, but my doctor told me he would put a new battery in and leave the lead in. I didn’t do it. I waited to see if the symptoms came back, as to not needing another surgery. I had some symptoms with the stimulater too like pain at battery site and sciatic pain running down left leg. As soon as the battery stopped working the sciatic pain stopped. I had a different doctor remove the implant and battery last week and was warned the lead could break off in the sacrum during the removal process. The battery was removed but unfortunately my lead did break off. She explained to me the longer you leave the device in the larger the risk of it breaking off? I think Meditronic the manufacturer of the interstim device makes these leads that are proned to fracturing and have been recalled many times ? I really just want to know is it safe to keep this lead in my sacrum for the rest of my life?

  17. Curious if anyone has nerve damage from the sacral nerve stimulator. Mine are connected to the sacral nerves. Can this unit affect nerves in other areas of the body? thank you

  18. My implant was installed about week and a half ago. Before 12hours had passed my left knee was not functioning correctly, pain and seeming to not hold me up. Never hve had trouble before. There was no bruising, no swelling no visable injury. JUST PAIN and NOT FUNCTIONING! I am going beck to surgery in 3 days and am going to tell him to take ALL of it out. I would rather wear a Depend the rest of my life and have my mobility back!

  19. I had the inter stem 2 done exactly a week ago today,However if I knew the pain I would be in I wouldn’t have went through it.I know it’s only been a week but where the incision is it’s very sore and tender very uncomfortable to sit or even sleep

  20. I’ve had the Interstim for 24 days. It has greatly helped my urinary retention but the side effects are really scary and different from day to day. For the last week I’ve had a burning and pinching pain starting at the lead incision site and about 4 inches going down my right buttock when I sit in my car or on a sofa with numbness in my foot and or leg. I’ve had to decrease the Amps significantly to manage the numbness which reduces the effectiveness of the treatment. Medtronics gives you the brush off and my doctor looks at me like I’m crazy. I feel so alone and wish there was a support group to discuss these issues. It’s overwhelming and I hope there is some adjustment that can be made because the therapy has worked for me but the pain in my back isn’t tolerable long term.

  21. Had the Interstim implanted three days ago…I had lower back pain during the trial, but dr said was not related. I believed him. Now after my implant, I am experiencing the serious incision site and lower back pain. I would go so far as to say my WHOLE LOWER TORSO aches significantly, with sharp pain at the incision.
    I am embarrassed I did not find/read the comments here.
    Question? Does anyone know someone, personally, that has the implant and is mostly happy and painfree?

  22. Had an interstim implant in February. Since my restless leg syndtome has multiplied and I am ready to jerk this implant out. Need relief. Has anyone else had this problem?

  23. Thank you all for your honesty and for sharing you experiences… this was recommended for me because of bowel incontinence due to pudenal nerve damage (baby’s head crushed it during birthing process)… wow y’all. I’m convinced NOT to borrow any more trouble and pretty sure that the risks of complication, infection and other new mysterious pain isn’t worth the risk… may The Lord bless each of you and give you relief and healing. You are courageous and amazing human beings, hang in there.

  24. Has anyone experience psudo seizures with a bladder stimulater?

  25. Has anyone had good results of this product?
    I am about to have this done and after reading all the complaints I am not sure.
    My problem is only bladder. Will this interstim cause bowel problems after?
    Thank you

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