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  1. #1
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    IC and urinary retention

    Can chronic urinary retention be a side effect/symptom of IC? If yes, any suggestions on how to deal with this problem?

    I have all the classic symptoms of IC including urinary frequency, pelvic and lower back pain, etc. However my urinary retention seems to be a bigger problem (at least from my urologist's perspective) than is usually seen with IC. I'm trying to figure out if this could be part of IC and therefore might respond to IC treatment once my bladder becomes less inflamed, etc.

    Just wondering what others experience in terms of post void residuals, especially in flare ups. My PVR during urodynamics and bladder scans are between 200-240 mls which is apparently quite high and they are recommending self catheterization to deal with this. Basically, I have pain/pressure when my bladder is filling and then when I go, although it temporarily feels empty the PVR shows a large amount of urine left and then I feel the urge to go many times, trying to empty but can only go smallish amounts with low pressure.

    Does anyone else struggle with urinary retention to this extent? Has treatment for IC cleared this up eventually or is this a secondary problem (i.e. atonic bladder or Fowler's)?

  2. #2
    Forum Manager ICNDonna's Avatar
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    to the IC Network.

    The amount of residual urine you are showing is a lot --- when I've been tested it's been 50 ml or less, which I'm told is okay.

    Have you been tried on any of the medications that help make urination easier --- such as hytrin, flomax, or cardura? If those don't work for you, it may be that catheterization is the answer for you. Have you learned how to do the procedure? It isn't difficult.


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  3. #3
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    Thanks for the reply. My uro seems to share your thoughts that this is a high PVR so needs to be dealt with.

    I have another cysto scheduled for two weeks from now to check for any structural problems (i.e. blockages or thickening) of the urethra. Cysto I had two years ago was normal.

    If nothing reversible is found, I think the next steps will be some med, perhaps Flomax, and self cath. I'm only 37 so don't relish that but will do it if necessary to avoid kidney damage. I'm very keen to work with my uro to find out what is causing the retention so we can treat it if at all possible so am exploring any avenues I can.

    On that note, I was just wondering if we treated what seems like IC if the urinary retention might clear up somewhat. I've been trying the IC diet for the past two months and that alone seems to be improving the frequency greatly as well as the pressure/pain that I believe is associated with retention. There's definitely been an improvemet. So, I'm contemplating talking to my uro about proceeding down this route of a more conservative approach for a few months and see if the retention is reduced.

    I've also had a spinal MRI to rule out nervous system causes (i.e. MS, tumors on spine). I'm trying some pelvic floor therapy as well to see if some that might help. Wondering if biofeedback might be helpful to get me in touch with my bladder muscles to help me void so I'm starting that next week.

    I'd really appreciate any advice/feedback from people who've had this problem with retention and what has seemed to help.

    Thanks so much!

  4. #4
    ICN Member nanawaggs's Avatar
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    Hi, "Girl" ~ I'm so sorry you're experiencing such pain. I can relate to you very much.
    I have the same problems with my retentions...200-250-300+mls. They don't tend to worry if I stay around 100ml. I have the extreme urge to go, then sit on the toilet and it feels like so much urethral pressure but nothing comes out. Then I'll try a little later and maybe get relief to at least be able to sit in a chair normally, but when they cath me they get from 200-300 ml's. I do have PFD which I've had quite a bit of PT but these horrible symptoms continue to return. Considering I always have a high PVR, it surprised all of us when they did a UA/culture and it DID come back positive for a UTI. (that's rare).

    I'm having another Urodynamics test this month to help rule out any obvious problems (I had the urethral sling put in 11/2007 and it's a very real possibility it's way too tight since I had problems with the bladder suspension from the same doctor).

    Take care and hope you get some good relief soon. Wouldn't it be wonderful!!!

    OH, I meant to tell you that I've been treated for IC for well over a year now and I still have this "retention/pressure" problem.
    Last edited by nanawaggs; 09-02-2011 at 12:14 PM. Reason: Added info
    Never heard of IC until it was suspected....Never knew so many are suffering from it.
    Praying for a cure.


    11/2007 IC Symptoms began during recovery period of surgery for bladder suspension and hysterectomy, painful urgency/frequency
    8/2009 Suspected IC
    1/2010 Treatment began
    2/2010 Diagnosed PFD, began Physical Therapy
    2/2010 Surgery to remove mesh from bladder suspension
    5/2010 Surgery to repair bladder, vaginal vault and small intestine prolapse
    5/2010 IC officially diagnosed during surgery
    7/2010 Diagnosed with Candida Esophagitis, Gastritis, Diviticulosis, Gallstones
    8/2010 Surgery to remove gallbladder

    Treatments:
    Heparin/Lidocaine/Bicarb/Kenalog Instills
    Macrodantin 100 mg after each instill
    Valium Vaginal Suppositories: Cyclo/diaz/lido, 10/5/62.5 mg
    Pyridium as needed up to 3xday
    Celexa 10mg daily
    Premarin Cream 3xweek
    Aloe Vera
    Prelief
    Dual Action Acid Reducer/Antacid
    Fiber supplement
    Probiotics
    Physical Therapy for PFD
    IC Diet since 8/2009
    Gabapentin, 12/2011....seems to be working great!

    Medications Tried and Discontinued
    Elavil, worked up to 50mg (started 1/2011), caused retention & high blood pressure
    Urelle, caused retention
    Vesicare, caused retention


  5. #5
    ICN Member
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    Ginger,
    Thanks so much for the info and your kind words too. I'm so sorry to hear that you've had such a struggle and hope you get some relief very soon.

    Have they tried you on Flomax or any meds? Do you currently self catheterize while they try to figure out how to help you?

    Thanks again...I so appreciate your willingness to share your experience with me.

  6. #6
    ICN Member nanawaggs's Avatar
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    Hi again! No, I don't self cath yet. Have the supplies though and they've taught me. I try all other avenues first.....shower, relaxation techniques, vaginal valium suppositories up to 2xDay, warm rice bag, etc. I'm not sure if sometimes it's something I've eaten. I try to really watch, but sometimes may not make the best choice and occasionally denial of IC sets in and I try to be normal. Use Prelief a lot with just about everything I eat or drink. They haven't mentioned Flomax, I'll have to ask them.

    Thanks for the suggestion!
    Never heard of IC until it was suspected....Never knew so many are suffering from it.
    Praying for a cure.


    11/2007 IC Symptoms began during recovery period of surgery for bladder suspension and hysterectomy, painful urgency/frequency
    8/2009 Suspected IC
    1/2010 Treatment began
    2/2010 Diagnosed PFD, began Physical Therapy
    2/2010 Surgery to remove mesh from bladder suspension
    5/2010 Surgery to repair bladder, vaginal vault and small intestine prolapse
    5/2010 IC officially diagnosed during surgery
    7/2010 Diagnosed with Candida Esophagitis, Gastritis, Diviticulosis, Gallstones
    8/2010 Surgery to remove gallbladder

    Treatments:
    Heparin/Lidocaine/Bicarb/Kenalog Instills
    Macrodantin 100 mg after each instill
    Valium Vaginal Suppositories: Cyclo/diaz/lido, 10/5/62.5 mg
    Pyridium as needed up to 3xday
    Celexa 10mg daily
    Premarin Cream 3xweek
    Aloe Vera
    Prelief
    Dual Action Acid Reducer/Antacid
    Fiber supplement
    Probiotics
    Physical Therapy for PFD
    IC Diet since 8/2009
    Gabapentin, 12/2011....seems to be working great!

    Medications Tried and Discontinued
    Elavil, worked up to 50mg (started 1/2011), caused retention & high blood pressure
    Urelle, caused retention
    Vesicare, caused retention


  7. #7
    ICN Member DaniMSC's Avatar
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    Mar 2011
    Location
    California
    Posts
    200
    I have retention when my flare is really really bad. I think for me its all about PFD. When I have retention, I tend to push a bit to try to get it started, or try to get it out, and that causes a chain reaction of pelvic floor muscles strain and spasm, that makes it harder to pee! The other time I have retention is due to trying new medications for IC. For me catherization is so painful I involuntarily squeeze and tense all my muscles, and I think it really messes up my whole pelvic floor system for awhile and so after instillations I also feel a lot of retention due to PFD.
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

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