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  1. #1
    ICN Founder icnmgrjill's Avatar
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    Understanding Sacral Nerve Stimulation (Interstim, ANS)

    Some doctors and medical equipment companies (Medtronic, ANS) advocate surgery to permanently implant electrodes and a unit that emits continuous electrical pulses. While it is NOT approved for the treatment of interstitial cystitis, it is approved for the treatment of incontinence, frequency and urgency. It is being aggressively marketed around the world despite the lack of published studies that verify its LONG TERM effectiveness.

    It's very easy for patients to get excited about this procedure as "the" long awaited answer to their symptoms. It's VERY important that you take time to thoroughly research this before agreeing to have the procedure done. Below, you'll have the chance to read some of the serious adverse event reports filed with the FDA. On our site, also you'll find patients on this web site who have had terrible experiences. On the otherhand, you will also find patients who have found great results... usually in reducing their frequency. You HAVE to do the work to learn about this procedure and how it works, to ask tough questions about successes and failures, and to review the experience level of your doctor. We urge caution when approaching this, the most controversial treatment approach, for IC.

    How does it work?

    Neuromodulation uses mild electrical stimulation of the sacral nerve. For patients with extreme frequency/urgency and who have failed other therapies, this surgical therapy is a new option. Patients with urinary and/or fecal incontinence have also had positive results.

    Many doctors around the country, as well as the US FDA, are very clear in stating that this treatment should ONLY be considered after all other conventional therapies have been tried and failed. Why? Because other treatments (oral medications) have consistently and effectively reduced the symptoms in many patients. So, for the IC patient, this means that you should not consider this surgery until you have tried both oral (i.e. Elmiron, Hydroxyzine, Elavil & various alternatives) and intravesical (DMSO, Heparin, etc.) therapies.

    What does it involve?

    Patients are first required to undergo a test stimulation, which is a three to five day trial period of stimulation. If the results are favorable, doctors may then recommend a permanent implant. During the trial, patients will be asked to keep a voiding diary to track their symptoms. If, after that period, your diary indicates that it significantly helped your symptoms, you may be recommended to have the permanent implant.

    Knowing the risks

    Before diving into a major surgical procedure, we recommend that you educate your self about the specific device. Ask for the introductory materials and video provided by the company which are available at no cost. Review the manufacturers web site.
    Medtronic - http://www.medtronic.com
    ANS - http://www.ans-medical.com
    Urosurge - http://www.urosurge.com

    Talk with other patients, both pro and con, to learn what their experiences were after surgery. You can talk with patients who have had both good and bad experiences here in our message boards

    Go the National Library of Medicine and do a search for any new research studies available that talk about the overall success rates of the procedure. Unfortunately, we've found very few studies. You can find a direct link there at: http://www.ic-network.com/library/

    Verify the experience of your physician

    Don't forget, as well, to ask your physician about his experience with this treatment. Surgeons new to the procedure are far less experienced. Here are a few suggested questions:

    How many implants has he or she done?

    Who trained the doctor in the procedure? When?

    What have the patient responses been?

    What adverse events, if any, has he encountered?

    Have any of the patients needed revision surgery? If so, how many times have patients (on average) required revision?

    Have any of the devices required removal?

    Did he remove the device successfully?

    Will he be available for consultation after the surgery?

    Will he be able to program the device, or will he require a representative of the company to do so?

    How often will that representative be available?

    How often will you be expected to visit your doctors office?

    Who will cover for your doctor if you are having a problem and that doctor is not available?

    What post surgical pain care plans are available?

    We ask you to be extremely cautious if any doctor recommends this as a first line therapy for IC or OAB. Sadly, some patients have been advised that this was a first line therapy, only to discover after the fact that there were oral medications that could AND SHOULD have been used first.

    Known complications
    While some patients have experienced improvement in frequency and/or urgency, others have reported serious and unexpected complications, including:

    pain at the implant sites
    lead migration resulting in device failure and requiring additional revision surgeries
    electrical shocks
    uncomfortable sensations in the legs
    infection or skin irritation
    mechanical device failure
    negative change in bowel or urinary habits
    numbness
    nerve injury

    Medtronic has reported a serious complication with diathermy.
    http://www.medtronic.com/neuro/inter...m_warning.html

    Also, a review of the FDA Manufacturer and User Device Experience (MAUDE) database (http://www.fda.gov/cdrh/maude.html) currently reports more than 50 serious adverse events resulting in injury, hospitalization and/or including malfunction of the device, including: bowel perforations resulting in the lead migrating out of the rectum during bowel movements, jolting, shocks, violent shocks, burning" while going through various security systems at airports or stores. Two experienced severe reactions as a result of diathermy, which should not be performed on patients who have the implant.

    Take a moment and scan through those MAUDE database records. You can do a search based upon the company and product name.
    http://www.fda.gov/cdrh/maude.html

    Conclusion

    This is a serious procedure, not to be taken lightly. It is not approved for IC by the US FDA. It is not approved for the treatment of pain. Patients have reported serious complications requiring hospitalization. We urge you to exhaust other, more conservative, treatment strategies before considering this procedure. And remember, if you're still drinking coffees, teas or sodas (i.e. irritating your bladder on a daily basis), there's a chance that no therapy will be as effective as it could be.

    Recommended Reading
    Nerve Stimulation Check List & Orientation
    http://www.ic-network.com/handbook/i...questions.html

    Interstim Information website
    http://www.interstim.com
    Please review safety information, particularly that related to the use of diathermy

    Medtronic's List of Risks & Contraindications
    http://www.medtronic.com/neuro/inter...m_warning.html

    FDA's Manufacturer and User Device Experience (MAUDE)
    http://www.fda.gov/cdrh/maude.html
    You can research adverse event reports filed with the FDA about this, and any other, medical device.
    Last edited by icnmgrjill; 10-30-2010 at 06:38 AM. Reason: Correcting Title
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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  2. #2
    Support Volunteers ICNJess's Avatar
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    Jill,

    I think you give wonderful advice. I am a patient who has the InterStim, and I would just like to say that you MUST MUST MUST do your RESEARCH!!! This is not a decision to take lightly. These message boards will always be full of conflicting opinions, that's why it's important NOT to make your decision based solely on how other people feel.

    Make sure to have a doctor who will LISTEN to you--be your own ADVOCATE. Do not be pushed into this. Make sure this is something YOU WANT TO DO, not something that someone else thinks is best.

    Only YOU knows what's best for YOU, and only YOU will care the most. Please be careful, do your research, and ask questions. Knowledge is key when it comes to your treatment. We can always provide stories and links, but only you and your doctor can really decide if this is right for you. There is a reason this is a last resort treatment. I can say from personal experience, that had the instills or medications for IC worked on me, this is not a path I would have traveled down.

    Jess
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  3. #3
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    I also agree this is wonderful advice, I did research Interstim for months upon months. 95% of your questions to the Dr where answered by him without me even needing to ask. I was one who a year ago would never have considered this procedure. After pregnancy and a significant increase in bladder issues. i started giving it serious consideration and research. However, under the correct medical care this device can and has been done with minimal discomfort and very little use in narcotics for incision pain. I actually used more narcotics for everyday IC issues before the device was implanted. I feel researching your physician and his ability to do the procedure is a major plus in success with Interstim. I in no way was pushed into this, this choice was left totally up to me. A year ago my URO told me that when I wanted it I would know when to say OK and I did.

    There are risks with ANY surgical procedure as well as an new medicine you take, both are risky as many well know. i was even ask during my pre-op visit with pre-admission if I wanted to just have a spinal for this. I chose not to simply because I didn't recover well from that during my c-section. Numbness, pain around the injections site, several things mentioned above with nerve stimulators, but that was a procedure that had to be done and i chose myself. I realize this is a sticky subject iwth others as it is a great one to me. I appreciate the links to check out, as I looked at most of those before I made this choice. I will admit I am a little bias on my Dr as his success rate with interstim is off the charts. That was a major plus in helpin gme make my decision. I am now 7 days into the Interstim and have never been happier with how i feel. I think this is a personal choice for each individual person and agree that it shouldn't be taken lightly. I tried every drug combo you can list and had no luck or even had some make me worse. T

    I went into the Interstim looking at it as another prescription that will not work and when it did for once I was amazed. Something NO medicine has done for me up till now.

    I would never bash anyone for not getting one or decideing it isn't right for them, nor will I ever persuade someone wither. it really is a personally choice. This is just my story and don't want it taken as medical advice to anyone, just think and research your options.

  4. #4
    Support Leader dyno's Avatar
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    Jill,
    Thank-you for the very informative post. For those considering this treatment, you have given them many avenues for doing their research.
    Jolene

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

    Information for Patients can be found here.
    http://www.ic-network.com/patientlinks.html


    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




    Newbie Angel...I will be happy to answer any questions or just listen. Email me at joleneb2@yahoo.com

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

  5. #5
    Registered User codyryonwoodward's Avatar
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    I also agree I am a patient who thought at first the interstim has been a life saver for me and maybe at one time it was....But I am also a patient who has had adverse reaction to it I have reported it to MAUDE and the FDA and Jill god bless who helped me alot back at the beg of the year when I was having so much problems.

    After having the unit for about a year, It was implanted Nov 2001, even though I had frequent reprogrammings my urgency and freq returned. My pain levels became progressive worse over time. My uro refused to write anymore scripts for pain meds even though he knew the stim never helped with my pain problems. Then I would have shocking moments. At times when I needed to have a bowel movement the unit would send a shocking pulse to where I lit could not move until the unit was turned off. I also had toe curling on my right foot. At first when I got it my big toe would curl now all of them but the little one curls. When I turn the unit off they stop when I turn it on it starts back.

    Now I lost my job in 2002 and I had COBRA for a while then it ran out. I have been trying to get ssi since Dec 2002 finally got word it was approved the past Dec. Anyway when I lost my insurance the urologist that install the unit told me the above problems where normal and he refused to help me b/c I had no insurance. Thank god Louisiana has a charity hospital system, cuz alot of states dont, I started going there but it took 8 months before a dr came there that new anything on IC or had any knowledge of the Interstim. If the lead wire moves any even 1/4 of inch or less the whole unit can mess up. This is most likely the problem for me...I am now faced with another surgery. I am trying to wait until I get my medcare or what ever from SSI to start any of that.

    I want people to totally research every aspect of this. I am not saying someone should or should not get this. But the last 1 1/2 of trying to deal with the stim and having no insurance what so ever is not great. But please, please look at the long term of this. And make sure your dr has experience with this. I was the 4 unit my uro did. And if you do have problems report it to the FDA and Maude that the only way we will ever know the long ter affects of this treatment.
    Patricia

  6. #6
    Registered User conerie's Avatar
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    Is there anyone out there that has had the interstim for more than a year? I'd like to get a feeling if there is an long term history positive or negative. As this is a huge decision for anyone who is considering this procedure, it is extra difficult for me, as we live in Germany and I would be doing this procedure long distance. Flying to the U.S for testing and implant and then trying to work with it back in Germany. Am I nuts to consider this option? Thanks,
    Conerie

  7. #7
    ICN Member tigger_gal's Avatar
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    I think the advice is well given.. I also want to add that when you have the interstim put in, you should not go thru securtiy if at all possible at an airport, bus station, or train station.. because Medtronics gives you a card so you do not have to do so. I have avoided security gates by simply showing them my card....
    Reguarding the diathermy and mri's... they cleary tell you and have in black and white, that you cannot have these procdures. remember to keep that in mind Mri's is a test that they catch strokes on and other issues that only can be detected thru this procdure. even with the device remover you still may not be able to have this done.

    bowel perforations resulting in the lead migrating out of the rectum during bowel movements usually only occurs if your doctor has left the leads to long or has weaved them thru your bowls to place the device in your stomach.. I would think that would be at a higher risk to patients..

    Most interstim failures end up being dr error.. Please make sure your doctor has been trained to do this, and ask alot of questions.. Don't be rushed out the door, if your not satifised with your answer.. re word it just in case it was mis-understood.


    The interstim is not fda approved for IC, because if it was it would have to help the pain.. and keep in mind it dose not....
    It is approved for frequency and urgency and inconstitence..

    Take your time in making the decision on getting the interstim.. ask lots of questions.... and let this be your decision not someone elses.. try everything before a surgery

    I have had my interstim since 2003.. I have never had any bad side affect, no numbimg, no twitching, no toe curling, no pains in my legs.. I wish every one could be so lucky.....
    I researched the interstim over a year before I made my decision.. I hope every one researches before jumping into getting a surgery..

    Hugs
    Cindy
    'The will of God will never take you where the Grace of God will not protect you.'

  8. #8
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    I have had 1st stage innerstim done about a week ago. I am now facing a possible implant go to the doctor Tuesday. If anyone can tell me what the second stage is I would br greatful because I think the 1st procedure was a little painful because of the incesions they made. Not the shocks because I barely don't notice those and it seems to be helping with the bathroom problems but I'm still curious to what I will be dealing with.



    Katherine

  9. #9
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    the second stage they implant the wire into your bum to a battery that is placed in the small incison made during the stage 1. Gosh that sounds confusing. They just reopen the first incision and place the battery there. It really is no big deal, your bum will be sore i won't lie.but only a few days. Good Luck. I have hard the stage 2 done for about 3 weeks and have had the best 3 weeks of my life.

  10. #10
    Registered User SaraJ's Avatar
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    I don't have an interstim, I have a dual lead SNS - made by ANS. It has helped a tiny bit with pain and definately help with urge and frequency - I now can 't feel at all if I have to go unless having a huge flare. I am retaining up to 100 cc's of urine each time I go and I can not have a bowel movement. My pain is traveling into other nerves so they (my docs) have decided that I have CNS related pain also and I go to see about having my Thalamus removed sometime next month at John's Hopkins. I have bladder pain, urethral pain, cuff pain and pelvic pain. I have tried everything to get rid of it. So I have two options left. A spinal cord pain med pump - where they pump opiods directly to my spine or neuro surgery. since most opiods give me hives - they think the head surgery is it for me. :woohoo:

  11. #11
    Registered User ducky's Avatar
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    Trying to figure out the ins, and outs of this message board.
    I use a TENS unit off and on. I think it helps if you continue to use it.
    Especially on long trips in the car. But they advise not to drive while you have it hooked up. It may cause a nerve to spasm, and aceleration of the gas pedal!

  12. #12
    Guest emilyrose197377's Avatar
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    I am wondering is there a similiar stimiliator that stimulates your nerves so you can feel to go to the bathroom with Ic/neurogenic bladder.

  13. #13
    IC Friend Dusty's Avatar
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    Thank you Jill,
    You made me cry for the first time on behalf of all of us with interstim damage. You stated it more like it is than Medtronic will and does. The questions you advise and those of us with interstim damage advise people to ask their doctors are so ignored by so many doctors. Many people have repeatedly told me they were pushed, made to feel guilty or it was used as a first line like for me, and many are given no option but to do this....and they are not just like me told anything about any of us with damage. Even when asked the questions you suggest and I have suggested people ask..doctors are failing to answer them honestly. I so appreciated you posting as you did. This is not something that anyone should be forced into or made to feel they have no other option. It is a product that can and does do great damage. There are as Jill said a lot of adverse reaction reports filed with the FDA and Maude..and they are not pretty to read. There are too many of us to count that have damage from these. There are too many doctors not telling the patients all about this product. There are too many doctors dropping patients when things go wrong just like mine did. Too many refusing to take it out. It is so hard to find all the research on this device as all is not made available.
    For the lady in Germany this device is a device that can do great damage to your body if anything goes wrong. I am one of those people. I lost my ability to walk and so on and had to learn to walk again. I have permanent and irreversible nerve damage to my spinal cord and left leg and lower half of my body. If there is no one in Germany to take care of you medically at all..then I would really think this over as the device can change in an instant and you need help. If you have to fly to the US everytime something is not OK that is something you really need to think about..because like I said it can go from bad to good in seconds and change your life forever. You must have a doctor that is willing to work closely with you no matter who you are. You must have a doctor that knows exactly what he is doing with interstim. You must have doctor that is ready to talk to you at anytime while this device is in your body and not brush you off or tell you the things you are experiencing are normal. It is not normal for your toes to curl, or shocks to go to other parts of your body,feet,legs and so on. It is not normal to be in horrible pain. It is not normal to not be able to walk or move due to shocks or get shocks that almost or do drop you to the floor. Anything can change your programming also not just the doctor..certain things that cross your path can. Sometimes these devices fail on their own and change the programming itself as mine did. Or refuse to turn off as mine did. You must have a doctor that will work with you and commit to being there for you 100% and not with threats and intimidation and not with refusal to take it out if you so desire. The decision to get this is up to each individual and I know to well how so many were forced or told it was the only thing for IC..I had no clue of meds or anything..I was told this is it for IC..it was too late for me however. Now it is not too late for anyone..if your doctor won't tell you about the adverse reactions or the women with trouble then I guess I would be leary of them..if they are honest with you and tell you, yes there are some problems and have been some serious problems and tell you what they are then that is a good doctor..and he or she should I think help you make the right decision for you. Unfortunately getting a doctor to tell this part that does interstim is hard. Talking to uro's that do not do them and they will tell you. You must make sure if you are going to proceed that you get it in writing that if anything goes wrong at all and you want it out they have to take it out so you are not stuck like so many of us have been..the longer it is in your body while it malfunctions and so on the more time it has to do damage. The importance of your doctors willingness to take it out is as important as his willingness to put it in..that is a must..if they can put it in then they must be willing before hand to take it out.
    For some it is such a wonderful blessing and for some of us it has been a total nightmare that never should of happened. My nightmare with interstim should never of happened at all..as my doctor trained under the inventor so as far as I am concerned the first time things went bad he should of removed it because the doctor he trained under is not practicing medicne here in this state anymore as he can't......so this doctor knew about the adverse reactions and he put it in and he is still putting them in and not telling people about us. So please be very careful and call another doctor that doesn't even have a Medtronic connection and ask questions if you have to in order to get the correct information also. I have had people that know about me and the others go and ask their doctor about these adverse reactions and then tell me the doctor says there are none or the ones that exist are just minor things..that is not true. So check beyond your doctor and find out all you can.
    And Jill once again you have no idea how after all this time you touched my heart by this post..after all this time of a body so wracked and damaged. After all this time of fighting to gain back my ability to do things and some never. For all of us with damage and all of us that will never ever be the same, and for the ladies so hurt emotionally that stopped coming to the boards because they couldn't take it anymore and they were hurtign body and soul...I also want to thank you for them as I have never forgotten their names and know they are still out there with bodies like mine. I pray someday the FDA will get on this interstim more than they have. I think someday they will as I have talked to them personally about this product. I think it is a matter of time before the story of interstim and what happens goes public to the media and then everyone will know. People are trying to get that story there. Then these hidden dangers and adverse reactions will be known and people will have more information to go by before they make a decision.
    I just finally feel for the first time by your post that the validation that is never given was finally given and I thank you for us with damage.
    Dusty

  14. #14
    Registered User lexur's Avatar
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    Exclamation thinking hard or maybe hardly thinking at all

    I just had a bunch of tests....and now my uro has told me that I have text book IC but he thinks my pain is from my pelvic floor muscles, which is irrating the IC and my Endo, oh and now I'm having probs with my bowels...so it kindof makes since to me...he drew this conclusion from with results from a hydro/cysto/biopsy and urodynamics he himself did. And also my last uros tests (potassium, cysto and hydro and treatmentsMSO, Heparin, and anti-biotics...and I'm bipolar so I'm already on the psych meds)

    So now he is wanting to do interstim, honestly when he suggested it, I was excited I told everyone that it could be the best thing to ever happen :woohoo: or it could be one of the worst , isn't any treatment???

    But then I got on the net and starting looking into interstim, I didn't realize it was sooo controversial,

    I have an appt with my uro to ask the essential questions but I'm wanting to know if anyone has went through the same type of thing...does it sound like I've covered my bases...Is it something I should do at 23. I mean ever since all this started my relationship is going down the tubes, my 3 year old is getting unruly(some times I can't control her, the pain), and I've been isolated from my family b/c my mother is mad at me...I guess...that's a whole other rant....

    I need something to work for me, or I think I'm just going to lose it....

    (oh yeah...I haven't tried elmiron, my insurance won't pay and I can't afford rent and utilities let alone come up with an extra $300 a month)

    I'm against the wall , I just don't know whether to climb it, turn around and travel another path or just sit and waste away....i think i'm stuck in this third option....

    any response would be greatly appreciated....i need some group desperately....thanks for your time, and energy...(sometimes it's hard to come by)

    many blessings to you and yours,
    Lex

    23 and mommy to my 3 yr old daughter Emmagyn
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Always look on the bright side of life, da dum, da dum da dum da dum...
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

  15. #15
    ICN Member massagedoula's Avatar
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    Lexur,
    It seems that you have not tried Elavil, Hydroxyzine (Atarax/Vistaril), Detrol/Ditropan, Neurontin...PLus natural stuff like Cystoprotek, Marshmallow, and Aloe....So there are still some more oral meds out there you have the choice to try before the interstim!

    You probably know all this but I wanted to give you a little advice so you don't feel that the Stim is your last option...Though if you want it, go for it!
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

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