Bladder Injury/Interstim Therapy

I had a laporascopic hysterectomy in 2008. The doctor stitched the top of my vagina to my bladder causing them to have to open me up and repair the bladder. Ten days later, I was back at the hospital for yet another surgery due to an active bleeder in my bladder with a clot the size of a small tomato. Since then, I have had bladder spasms, which feel like menstrual cramping. I will have the pain/spasms after urinating, especially at night when I am at rest. I have been on Vesicare for these spasms since 2008 and it seems to work very well. But, the side effects are severe constipation and urinary retention. My doctor has suggested that I do the Interstim Therapy. I went through the trial period and during this time, I did not have any paid/spasms and was not taking my Vesicare. In the past, I would automatically start spasming two days after not taking my Vesicare. The urinary retention also seemed to get better. The constipation was no longer an issue either. 36 hours after having the trial device removed, I began having the horrible pain/spasms. So, I began my Vesicare therapy and am dealing with horrible constipation yet again. But, I am terrified to get the Interstim Therapy. I have read so many bad testimonies and believe me, if something bad can happen, it will happen to me. I had had several surgeries in my lifetime and am only 36 years old. So, do I continue with the Vesicare and deal with the side effects or do I try the Interstim Therapy???? Please help!

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In the choice between certain horrible pain/spasms/constipation on a daily basis, vs possible interstim side effects, I would avoid the certain problems, assuming you've exhausted other options.

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This is something I posted in response to another discussion but some of you may find it helpful because many of the issues and problems you described in your original post sound like what I went thru with my various surgeries. Sometimes because our bodies get really out of whack as we grasp at new and different therapies or surgeries that offer us a chance at being "normal" again.

Before anyone agrees to surgery for Bladder issues I stongly suggest they really ask their MD what he means to do if he does a Bladder tack. Many of us are on this site because of the complications or issues that happened as a result of that type of surgery.

Basically there are three types of surgery for “tacking up the bladder” and can be done laparoscopically or transvaginally and the pros and cons of each procedure should be discussed because deciding which is best. There is the Traditional Sling Surgery which is what I had in 1997 and uses tissue from the patient to create a sling to support the bladder and in some instances, the surgeon can choose to use a man-made type of material instead. Another type is the Midurethral Sling Surgery (can be done two ways) and the material for the sling does not come from the patient but is a synthetic material and the doctor uses a special needle to thread the synthetic material (special tape) beneath the urethra to lift and hold it in place and once he is satisfied how tight the sling should be he will end the surgery. The last one is a Retropubic Surgery and the most common type of this surgery is done using the Burch procedure. The Burch procedure is the “modern” improvement to the MMK procedure which is what I had the first two times. This involves making an incision a few inches below a woman’s navel and then sutures are threaded to ligaments within the pelvic area. Those threads are then used to secure the urethra’s sphincter by lifting it up to where the MD thinks is a good place. Even though this procedure is still being done, many Physicians have been persuaded by the Synthetic Sling manufacturers that this is “too invasive” and that their product offers the best result with the lest amount of recovery time.

My first two "Bladder tacks" (I had three large babies with fast labors that wrecked my bladder structure) were done using the MMK (Marshall Marchetti-Krantz) procedure which was a retro pubic bladder suspension. Even though each surgery was considered major because an incision was made through my lower abdomen I had 100% success with urinary incontinence and was totally happy going through the recovery period and recommended that type of surgery to anyone that asked. When it came time to have "another Bladder tack" surgery I assumed I would have the same surgery but, shock, they considered that type of surgery to be old fashioned and out of touch with today’s new medical miracles. Well, that revelation started my 15-20 year nightmare that turned into my issue with Overactive Bladder. My physician back in 1997 decided that I would be a candidate for a Rectus Facial Sling which involved a using both a vaginal and abdominal approach. They went in through my abdomen first and took approximately an 8 x 1.5 cm of rectus fascia tissue and created a sling which was then sutured to my pubic symphysis using Mitek Anchors. After that surgery I had nothing but severe pain and urinary retention to the point that I had an indwelling catheter for over three months and then needed to self cath periodically for many months. Because my Bladder was now in a different position, I discovered the only way I was able to urinate “normally” was to sit backwards on the toilet and “pivot” downward to change the position “somehow” before I could urinate. If my bladder became over distended because I either could not get in the correct position to void or if I was out in Public and not able to find a bathroom I would have a huge uncontrolled release of urine which could not be controlled by even the most absorbent urinary incontinence pads. No bladder medication on the market had any affect on this and I even enrolled in a Clinical Trial for new medications being tested. In 2001 I finally convinced a Doctor to “do something” and I had a Uretholysis with Division of Facial Graft because they finally discovered that the surgery I had caused urethral compression.

After that surgery I was able to urinate without as much pain but the incontinence because worse and I was again tried on every bladder medication pill and gel without any relief. Also during that time I would have horrible infections that grew bacteria that even my Doctor was surprised was possible for a human to have. Eventually the urinary urgency and infections became so severe that I ended up in the hospital and was treated with massive amounts of IV Antibiotics and then sent home on a combination of very strong oral antibiotics for three months of treatment. I was also given a “PRN Antibiotic” to take every time I had sex because they could never find out what or why I was having all these infections so they thought they would cover “all the bases”. Needless to say due to all the issues I was having, I didn’t have to get that PRN medication refilled very often. During all the years since the 2001 graft revision I tried to get my Urologist to see if some type of surgery would help or at least refer me for InterStim therapy and he wouldn’t do either because he kept saying I had “mixed” incontinence. I finally became so frustrated that the Urologist wouldn’t do anything but try new medications that I mentioned the problems I was having to my GYN during one of my routine visits. He examined me and discovered that I had a Large Central Cysctocele and Vaginal Vault Prolapse and said that most Urologists don’t even consider whether “female issues” and not just the “bladder” may be the cause of a patient’s incontinence. Both are very common in women that have had a Hysterectomy or earlier “Bladder Tack” surgeries so he recommended that I undergo a repair of the Cysctocele and have a Vaginal Suspension with Graft and a Tension Free Tape Suburethral Sling. This was supposed to be the “newest and best” procedure for incontinence. Our hope was that even if the surgery did not cure the Urge Incontinence, it would take care of the Stress Incontinence and then either medication or possible InterStim therapy would control the “left over issues.”

Well for the first few weeks things looked great except that I started having urinary urgency again and the vaginal tenderness that I noticed after my surgery never went away and progressively worsened. That surgeon referred me for InterStim Therapy as I was “finally” a candidate and while my bladder function is not where I had hoped it would be after surgery and InterStim, I am much better off than I was at the beginning of 2011. The vaginal pain never went away and I began to be frustrated with the fact that no one could get a handle on whether all my issues might be related or if I have just started having new problems. Anyway, I decided I could not ignore the pain any longer and sought help from a UroGynoecologist who specialized in Mesh and Sling problems as well as other female issues. Once he took my history and examined me he was most concerned about the vaginal pain and is actually considering that whatever is “there” could also be causing the urinary and bowel issues. So in the next few days/weeks he will schedule me for essentially what will be exploratory surgery do possibly do either another revision of one of both of the grafts I have in place or possibly try and remove all or part of the mesh that was implanted in February if it is the origin of the pain. He just like all the doctors I have seen always seem to summarize my issues by saying that “I am a very interesting and complicated case where there may or may not be an answer to all my issues.”

So I caution any woman who is interested in “Bladder Tack” surgery to ask a million questions and then do extensive research before you make a decision about what you will have done and how it will be done. I do not blame any of my Physicians for choosing or doing either of the two Sling Surgeries I had because I think in each instance they were duped by the manufacturer to believe that their product and/or procedure was the absolute best thing for their patients. Unfortunately, the last two surgeries I had came under fire by the FDA as procedures that eventually were found to cause severe complications. I am sure many of you have heard or read about all the Transvaginal Mesh Lawsuits that are being filed because of all the complications that have begun to appear in women that have had these surgeries. The lawsuits and FDA warnings all believe that not enough research was done prior to these products and surgeries being approved and mass marketed and that in some instances, there is evidence that some manufacturer’s may have altered or didn’t show any issues they discovered or the “failure” cases. Because the synthetic material (polypropylene or Prolene) that the tape is made from has been shown to produce extensive scarring and fibrosis, the long term adverse effects on the neurovascular system around the urethra has yet to be fully determined. It is thought that this synthetic material may affect the blood flow to the areas surrounding where is was implanted and may cause that tissue to die and erode. Also, there have been reports that many women can develop an allergic reaction to the material which can cause pain and infection.

To be fair and impartial, there are many women who have had these surgeries without complications or issues so everything that has been reported may be labeled as rare and isolated incidents unless you happen to be one of the women that developed complications. Unless the FDA removes the suspected materials from the market, you need to ask what material (your own tissue or synthetic material) your physician will be using during your surgery so you will know what is being implanted.

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While I had the hysterectomy, I also had the mesh bladder sling put in as well. So, do you think that the bladder sling could be causing the bladder spasms? I don't have any incontinence issues with the spasms. It just spasms after I urinate, sort of like menstrual cramps. Actually, I now have urinary retention if anything. I have to completely relax just to urinate. If I try to force it, then I have not luck. And it will come and go in spirts until empty. I also know that my abdomen is full of scare tissue from the initial hysterectomy. While having gall bladder surgery in 2010, they looks in my abdomen briefly and confirmed that my bowels and other organs are bound by lots of scare tissue. My right ovary is also buried in scare tissue.

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Possibly...they think mine was due to compression because the sling was too tight. I also had trouble emptying and don't have a "full stream" most of the time, even today. I too have incomplete bladder emptying so that (and pain) is one of the reasons why a new specialist will be going in to see what might be causing my issues (bowel, bladder and pain).

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Please keep me posted on what you find out. I am anxious to know if I may be having the same issue. Thank you for your kind reply.

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If you're having terrible problems with constipation, have you tried miralax? It's a miracle drug for side effects like you mentioned. You can get it over the counter. My doc still writes an RX and I'm able to get it cheaper. I just take a capful per day in some water. It has no taste, so it's very easy to tolerate drinking. It's a lifesaver if you have to take medications that cause the horrible side effect of constipation. You won't regret trying it!

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Wow!!! Best of luck to you. I guess I'm one of the select few that have had luck with the sling. Mine is mesh. I didn,t know there was such a sling made of our own tissue. Whatever you do, think it thru. I was willing to try anything because I was desparate to have everything stop. Keep your chin up and keep us posted.

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Well, I 'm back at work today and was able to pull up my OR Report to "see" what was done. It appears I had a "tight band" that was under the urethra from one side to the other. He cut the sling and once that was done, the band disappeared. He then freed the mesh from the bladder and removed a portion of it to send to Pathology. So far the results are not back so once I find out what the Pathology report says I will know if my problems might have been from the Mesh. This surgery (for all that was done) was the easiest for me as I have not had to take any of the pain medication he presecribed for me. I was told to go ahead and take some Advil before I went to work today which I did.

One good thing that came from this surgery is that I have been able to urinate much easier and believe that I might now be able to perfect my InterStim settings now that the "band" is gone. Will keep everyone informed.

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Glad you are back to work. Hopefully, you will have success with the interstim....

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I have had nothing but good result with my interstim. I have adjusted here and there but I really don't know where I would be without it. I wish you the best. I too dealt with a lot of the same issues you describe. It was worth a try for me and so far I have no regrets. I have had it in since July, 2011.

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Thank you so much Rockabye Bailey for your full explanation of your surgeries and everything you have gone thru and what all the surgeries mean. I am glad you got relief. The surgery options are so scary. It sounds to me like the traditional surgery from the past is the best and no one so far seems to have any bad experiences so far. Everything that has complications seems to be the procedures that have been recalled. I am trying so hard to lost weight and not have constipation. The constipation is the biggest contributor to the pelvic issues for me. I am not sure what originally causes my bladder issues, that has been going on longer.

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Try adding fiber to your weight loss diet as well as increasing your fluid intake. There are many products that you can just add to a beverage and once disolved, you cannot taste it and there are also pills. Many people assume that adding fiber will increase the consitpation when the opposite is actually the truth. When people don't take in enough fiber, it causes the muscles in the colon to get lax and so it doesn't have the strength to push the stool along. When that happens you can become constipated and can also form impactions. One thing I should caution you about is to start SLOWLY adding the fiber by whatever source because it can cause increased gas and bloating until your body adjusts. Also, try adding a stool softener like Colace or Ducolax or a comparable generic brand. Make sure you carefully read the box because there are laxatives that are packaged in similiar boxes with the same names I just mentioned. Also, there are some new products on the market that "improve colon health" by introducing good bacteria into your digestive system. I started taking Phillips ProBiotics and have noticed a big improvement. Again, you may find that you actually get upset stomach in the beginning but that goes away after a few days or a week or so.

Last week I had a graft revision surgery to my sling surgery that I had a year ago. After my sling surgery I noticed that I started getting constipated and when I had to have a bowel movement I ended up urinating also and vice versa. It turns out my surgeon found that a "band" had formed around my urethra and once he cut the sling the band went away and so did my bowel and bladder issues. You may want to ask you Dr. if you could have a Cystocele or a Rectocele because both can cause issues with both your bladder and bowels.

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I'm glad you were able to resolve the issue. I had a mesh sling and haven't had the problems with my bowel. hmm. Didn't know a band can form. I read about another person that had a band cut, too. Glad you're feeling better.

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Hi adk0342,
I recently had the interstim implanted and it is a lifesaver! I didn't have any chronic pain but I had urine retention and peed about 40 times a day! I now go a normal amount per day and I am able to sleep at night, which was impossible before. I am 44 years old and decided that I was too young to settle for anything. That is why I would do anything to live a normal life and having the surgery is allowing me to be normal.
It really was not bad a t all and I was back at work in 5 days. I had my suregry a month ago and I was at the gym this morning back to running and working out like I used to before the surgery.
Good luck in whatever decision you make. I hope it all works out for you:)
Claudine

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I suppose I am the only one on inspire who has for the most part had a positive outcome with interstim placement. I have a neurogenic bladder that does not function. I cannot urinate and also I have know sensation within the bladder (cannot teoo when my bladder is full). I had my first interstim placed in January 2010 and had know problems until late in 20012 and finally about February 17th the unit failed for some reason and 7 days later I had a new interstim implanted. It did take 6 days for the unit to begin allowing urine to flow but it works and no pain at all except for ocassional surges if moving from one direction to another. Good luck and I understand if you decide not to go with the interstim. My prayers and thoughts are with you. bookguy1950@suddenlink.net (John Ellis).

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My heart goes out to anyone on this site that has had problems with their InterStim device but I would like to ask anyone with a bad experience or someone that had their device removed for whatever reason NOT to tell persons considering getting an InterStim device to decide against getting one.

Each person needs to read the good and bad experiences on this site, do their own research as well and ask their doctor plenty of questions such as who will do my programming, how frequent will I need to see the doctor or programmer, etc., etc. and then MAKE THEIR OWN "informed" decision. As with any surgery, there are always risks involved related to each person's specific anatomy, the skill of the surgeon putting the device in, the luck of the draw meaning that "the device and leads" implanted might be ones that are defective and causes post surgery that could affect whether the leads or device move or not.

I had to have new leads put in 2 1/2 weeks after my original permanent implant surgery and it had taken me until now (6 months later) to get my settings to where I have control over my bladder at a setting that does not cause any pain. I cannot say whether some or all of the cases where persons on this site suffered excruciating pain were because their device was implanted too shallow or maybe their leads were implanted in the wrong nerve, whether the leads were at the wrong setting, the intensity was too high, the lead was set at the wrong polarity, rate or maybe the wrong electrode was targeted. One or all of these issues can cause severe pain and can affect whether the leads and device can be fine tuned to where they will effectively control whatever bladder or bowel condition the InterStim Therapy was recommended to treat.

For anyone that still has their device and is considering having it removed because of pain or other issues I would ask that you read the following information that explains what makes the InterStim Device work. I believe that if we are able to understand our device better then we can hopefully ask the right questions of our doctor, nurse, Medtronic rep or whoever is responsible for programming the device. I too have had periods of excruciating pain that caused me to turn my device off for several days to a week until the pain went away and when I turned the device back on, I was careful to either not use that same setting or if I tried it again, I would start at the lowest setting and carefully work my way back up. As I stated above, eventually I was able to find a good setting for me that does not cause pain but controls my overactive bladder.

This is something off the Medtronic Website that is not normally available to patients but I think it is important enough that every person with an InterStim needs to have access to this whether any of it makes sense to them to not. Even if it is a little confusing, you can still bring it with you and ask your programmer specific questions about each area in relation to where you are either feeling pain or where you are feeling a sensation.

To begin with the basics: during the placement of the Lead, the Physician will locate the specific Nerve (S2, S3 or S4) that they believe will produce the specific response and sensation needed to control the bladder or bowel malfunction. After lead placement, the programmer will try to come up with the proper combination of the following parameters that works best for the patient.

1. A PROGRAM defines the stimulation pulses that will be delivered and is a specific combination of pulse width, rate, and amplitude settings (along with other optional parameters), acting on a specific electrode combination.

2. AMPLITUDE is the intensity or strength of the stimulation measured in volts. Increasing amplitude increases the intensity of the stimulation and decreasing reduces it.

3. PULSE WIDTH is the time or duration of the stimulation pulse. Increasing the width increases pulse duration and decreasing it will decrease pulse duration (when you feel stimulation too intensely in one body location, increasing the pulse width spreads the stimulation and makes it less intense in that location).

4. RATE is the number of times per second a pulse is delivered. Increasing the rate feels more like a “flutter” or “vibration” and decreasing the rate gives more of a “tapping” or “thumping” sensation.

5. ELECTRODE POLARITY: The stimulation pulse is delivered from the Neurostimulator to the nerve through the electrodes on the leads. For the stimulation pulse to reach the nerve, you select the electrodes on the lead that best provides the stimulation and assign it a negative or a positive polarity. At least one electrode must be designated as positive and at least one must be designated as negative. The negative electrode is called the active electrode; a pulse flows from the active (or negative) electrode to the positive. Thus, changing an electrode to active, changes the location of the stimulation pattern.

6. EACH LEAD HAS FOUR ELECTRODES numbered 0, 1, 2, and 3 with electrode 0 situated in the most distal location. Typically, stimulation pulses from distal electrodes are felt more anterior and more proximal electrodes are felt more posterior. Configuring electrodes depends on how the leads and electrodes are placed in relation to the nerve that is being stimulated. They should be configured systematically, using a variety of electrode configurations and mapping sensory responses to each configuration. Quality of responses can be rated on a scale of one to five. As an example, if the electrode 0 is set as negative and 2 is set as positive, the stimulation might be felt in hip and the patient might describe the quality of the stimulation as a “four”.

Again, I don’t want to minimize any pain or horrific experiences anyone has had with their InterStim Device that caused them to either have it removed or make them think about getting it removed. BUT, it is not fair to make statements to persons who are considering getting this device that it does not work or that they should not have the surgery to get this Therapy. Each person’s experience with this device is unique in certain ways and I know for me, this therapy was my last chance at a normal life and even with the various issues I have dealt with over the past 7 months since my Trial Period I still believe I made the correct choice to get the device. I think anyone that begins a discussion or posts a reply to one owes it to everyone to give an honest depiction of their experiences (good or bad) but not devote their time and energy towards trying to convince anyone to either have or not have this surgery as that decision should be up to each individual.

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Hi,
I had a vaginal hysteroctomy at 28yrs old in 1976. The doctor shut off my kidneys during the surgery. I had to have 5 surgeries trying to ud-do what he did.

Since then, I probably have never had a normal bladder and didn't know it. I have had way to many bladder infections, spasms, in fact my bladder just dumps when it is full... I have waited out certain new procedures, like the sling, which doctors say now would have made my condition worse. I have overflow bladder now, and that's why I just dump... My bladder was holding 600cc of urine and I didn't even feel like going to bathroom....
Last Friday I had Phase 1 Interstim put in to me....What a horrible test, if they could at least sedate you enough to relax, it would be alot better... I'm now on day 5 and I am still not up running around....This surprises my doctor, but I'm one of these patients who if something can happen, it will happen to me..
I have to say that I can go a long long time and not have to go to the bathroom anymore. I sleep through the night too. I spendt so many hours in a day on the toilet.....
I'm not sure I like the way I feel with this stimulator going day and night. It has flared up some arthiritis in my body, but hopefully if and when I do phase 11 it will be alot smoother... I need to get over the fear (after reading so many different experiences) on this website.. I can't take medication, because the thought of constipation and dry mouth are not an option... I can't go around self catherizing myself... It is very painful...I'm not left with alot of choices. Where do you live because my doctor studied at UCLA where these were first discovered and she is supposidly one of the best. GOOD LUCK!!!!

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How long did it take to get back up after Phase 1

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