No announcement yet.

IC, OCD, and autoimmunity

  • Filter
  • Time
  • Show
Clear All
new posts

  • IC, OCD, and autoimmunity

    I am a new member. My adult daughter is 29 years old and has had bladder frequency and urgency since her elementary school years. She saw a pediatric urologist and tried medicines like Detrol. In high school her health declined in general: diagnosed with IC, anorexia, depression, insomnia, and fatigue. In 2008 was going to the bathroom to pee 60x / day. Getting little sleep and having a speeding heart rate, despite frequent exercise (hiking / walking). Interstim did not help. Wound up bedridden with fatigue. Tried IC diet, pelvic floor PT, bladder instillations, Elmiron (helps a little), Toviaz, antihistamines. Had cystoscopy and botox 2 weeks ago which has made her bladder pain / urgency worse. The only med that ever helped was an alpha blocker (relaxes bladder neck) but this causes her racing heart rate (dysautonomia / POTS) to reappear. Plus the alpha blocker gave her insomnia (anyone else had this happen?). However, Myrbetriq has helped a little without causing heart racing. In 2010 she developed OCD which makes her "need" to pee even more often. She was found to have neuroinflammation / autoimmune encephalitis and is getting IVIG infusions, which have not helped yet. She wants her bladder to be removed and is tired of trying meds and treatments. Anybody have any advice on the anxiety / OCD attached to her bladder functioning? Any threads here that we should follow? I fear that even bladder removal may not help!
    I have ordered a book by Amy Stein about pelvic pain and a DVD about pelvic stretches. I feel we should give this another try before surgery. OMG, surgery! I am a nurse and have seen surgical complications.
    Last edited by PJoy; 11-16-2014, 02:14 PM.

  • #2
    Re: IC, OCD, and autoimmunity

    I have read many cases when bladder removal did not help. It is about nerves, and they stay there.

    Is she on IC diet, has she tried estrogen vaginal cream (without propylene clycol), did she try Uracyst instills?


    • #3
      Re: IC, OCD, and autoimmunity

      Being a nurse, I know you are familiar with the potential for phantom pain. It's sad that your daughter hasn't found anything that will give her substantial relief. Did her procedure two weeks ago include hydrodistention? If so, it could still improve her symptoms. I don't know how long botox takes, but some are having good luck with it. The other side of the coin is that some have found that bladder removal has given some ICers back their lives. I know it's a difficult decision to make.

      Is she following the IC diet? I know you have said it didn't help, but not how long she was on it.

      Sending warm hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Re: IC, OCD, and autoimmunity

        I too have had similar experiences......For the first 2 years, when the elmiron did not kick in enough, I was in a constant state of depression and ultimately needed to see a psychiatrist. I also tried my best to have the bladder removed, but was talked out of it. Now I'm trying to do my best to take care of a terminally ill father, and a mom with advanced Parkinson's.

        Besides diet, for me, stress is the ULTIMATE trigger for my flares. I can go from mild pain to excruciating in a matter of 30 seconds when under stress and panicky situations. I drink a gallon of water a day to keep the burning minimal.


        • #5
          Re: IC, OCD, and autoimmunity

          I am the daughter (I couldn't find my sn for a long time so my mom wanted to help out). I have tried everything mentioned above: ic diet, installations, hydrodistention (4 x's). I've been trying psychiatric medication for the past 11 years with a top psychiatrist and not a single thing has ever helped, especially with ocd. I have autoimmune encephalitis as well which means my immune system attacks my brain causing psychiatric problems (severe) and inflammation, treatment is not helping. I have been on the ic diet essentially since I was a child. I am in constant misery, I can't rest, I can't sleep, I can't go anywhere, the ocd is attached to all things bladder, the mental obsessions and fears about my bladder are 24/7 (I can't wear the color purple because that will make me go to the bathroom, I can't think or say anything in incriments of the number 3 because that will make me go to the bathroom, etc. etc. all day). I have CFS (extreme fatigue) and need rest and sleep but I'm not getting it due to bladder so my condition is deteriorating. I am legally disabled because of all of this. My symptoms are twice as bad since getting botox 2 weeks ago, I never feel empty and urgency is constant. I am weary and exhausted in every way possible. My urologist has no other suggestions, my psychiatrist has no other suggestions, my neurologist is too busy to help and recently prescribed NAC which isn't helping just making me feel malaise. I also have POTS (dysautonomia) which is another autoimmune disease and one of the biggest problems with this condition is our bodies don't hold on to fluid so it seems to go straight through me.


          • #6
            Re: IC, OCD, and autoimmunity


            I am also legally disabled, both from the IC and a combination of many other undesirable auto-immune disorders. I'm not even healthy enough for sex, or any social gatherings for that matter.
            Sleep is key....I am taking 1mg of Klonopin and 100mg of Elavil before bed. It has helped...without it, I wouldn't sleep a wink.

            Please don't give up, medicine is advancing rapidly and there will be effective treatments available. We just need to hang in there....lots of progress using stem cells to re-grow's only a matter of time before it becomes a reality.


            • #7
              Re: IC, OCD, and autoimmunity

              Thanks Brian. I can't do anything or go anywhere either. Stuck on my recliner most of the day except bladder stuff getting me up.
              I haven't tried any pain creams or suppositories, that was never mentioned by my urologist. But I'm at the point that I need immediate relief, this is causing me a lot of misery. Has anyone else dealt with ocd that was directly surrounding the bladder issues? The ocd thoughts/obsessions/compulsions are all mental for me except for bladder stuff, well the bladder is on my mind 24/7, constant fear. IC has inflicted me for a long time so I think it's natural to have fear.