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  • #1

    please help

    I am a week into a flare and i cant stand it anymore. I have consistent urgency to go to the bathroom. it DOES NOT stop. No meds help. I cant even sleep bc my body keeps waking itself up bc it thinks it has to go. Im completely miserable. I can hardly move. I sit on the toilet for hours praying it will stop. somebody please help me!
    shannon

    previous meds:
    Elmiron 2 3x a day
    Hydroxyzine
    Elavil
    hydrocodiene for pain

    been med free since september 2010
    Tags: None
    • #2
      Are you at home? If so I would put some baking soda into a tub of water and take a bath. Maybe the warm water would help you relax. I know that when I am stressed out from pain and suffering it only makes it worse. Usually if I can get my self to relax it helps the symptoms. Also, a heating pad may help. I also like to drink herbal tea when I feel bad. It is very soothing.

      I really hope you feel better.

        Comment

        • #3
          Oh yes, I have been there too myself, ugh. It's not fun one bit. I was going to suggest the same things that aprilmae did Warm bath, heating pad... Have you tried Pyridium? I know sometimes that would work for me - I used the over-the-counter stuff, AZO Standard or Uristat - whichever was cheapest, lol. Um, even drinking a big glass of water with a tsp of baking powder stirred in can be soothing to an irritated bladder, but be careful if you have salt sensitive health issues...

          I wish I had more ideas, or just a magic wand for you!!!

          Keep your chin up and know it won't last forever (just feels like it sometimes! )

          Hugs!!
          Hugs,
          Tracey
          How do you eat an elephant? One bite at a time...

          Harry arrived 2/23/09!



          *IC 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.

          IC Diet Cheat Sheet:
          http://www.ic-network.com/diet/2009icdietlist.pdf


          Dx's:
          IC dx'd Nov 2004
          Lymphocytic Colitis dx'd July 2005
          Possible IBS
          Current IC Meds
          Vistaril 25mg in the evening
          Previous IC Meds taken:
          Cystoprotek - 2 caps 2x's a day
          Elmiron, 100mg 3x's a day
          Ditropan, 5 mg 3x's a day
          Others:
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS

            Comment

            • #4
              HI I had terrible frequency problems for MANY years and it wasn't until my Uro prescibed Elavil that it got MUCH better with in a matter of a few days! For quick relief I agree that Azo is probably the best stuff out there........and trying the heat though that doesn't do much for me in that respect. Call your dr. and get some help. Roxie

              Double Spinal Cord Stimulator surgery 8/09
              Unsuccessful MiniArc sling surgery 12/07
              Dx'd Hypothyroid
              Dx'd Chronic Axonal Neuropathy & Myopathy
              June 2007
              Dx'd IC May 2006 (after suffering for 25+ yrs!)
              First Cysto 1979
              First Hydro 1981 (Many treatments since then!)
              Collagin"Durasphere" injections for urethra
              Gall bladder surgery Aug. 2004
              Gastric Bypass Dec. 2004
              Dx'd: Barrett's Esphogus July 2004
              Dx'd: Vaginal Atrophy 2005
              Bladder surgery 2000
              Dx'd: IBS 2000
              Hysterectomy (fibroids) 1999
              Laminectomy 1989
              Dx'd: Degerative Disk Disorder 1989

              For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
              I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment

                • #5
                  Shannon

                  I have these exact feelings everyday! It's horrible and I dont sleep either. I have the constant urge to go and it drives me insane. Iv'e had it for 2 years now and I really dont know what to do!

                  I feel so sorry for you as I know how it feels! I havent been able to sleep properly for years and have to work full time. I spend hours running to and from the toilet in frustration!
                  you are not alone
                  Started with symptoms 2004 after a severe infection.
                  Was diagnosed with IC Feb 2006 after cystoscopy.
                  Diagnosed with vulvodyina and PN in july 2006.
                  Dignosed with ME and IBS Oct 2006.
                  Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                  Also doing IC diet and regular use of heat packs.
                  Still struggling with IC and controling my symptoms so looking for some help

                  also recently had abnormal pap, CIN III and just had LEEP done 2007

                    Comment

                    • #6
                      Ugh. Those are the worst! I hate that feeling. The girls have some good suggestions, sometimes a hot bath or a heating pad will help mine. I also have noticed drastic improvements with the Elavil. It decreased my urgency and frequency to ALMOST nonexistant. good luck!

                        Comment

                        • #7
                          Have you gone to the doc and have a urine culture done? maybe you have an infection? The baking soda in water, as gackable as it tastes, helps me too. I make sure I use extremely cold water, anything to mask the taste. I use only 1/4 tsp. per 8 ounce cup of water. The bath could help too. Wish I had more for ya. I'd start w/a call to the doc if at all possible. (((HUGS)))

                            Comment

                            • #8
                              thanks everyone ! Ill try the tips you gave me. So elavil works well with the urgency? I dont have any burning, i just have to go all the time.
                              shannon

                              previous meds:
                              Elmiron 2 3x a day
                              Hydroxyzine
                              Elavil
                              hydrocodiene for pain

                              been med free since september 2010

                                Comment

                                • #9
                                  Yes it works great for me with the urgency problem. I hardly have it any more. What causes the frequency is drinking cold water....or any cold drink. I"m not fond of drinking luke warm water but it's what I have to do. Roxie

                                  Double Spinal Cord Stimulator surgery 8/09
                                  Unsuccessful MiniArc sling surgery 12/07
                                  Dx'd Hypothyroid
                                  Dx'd Chronic Axonal Neuropathy & Myopathy
                                  June 2007
                                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                                  First Cysto 1979
                                  First Hydro 1981 (Many treatments since then!)
                                  Collagin"Durasphere" injections for urethra
                                  Gall bladder surgery Aug. 2004
                                  Gastric Bypass Dec. 2004
                                  Dx'd: Barrett's Esphogus July 2004
                                  Dx'd: Vaginal Atrophy 2005
                                  Bladder surgery 2000
                                  Dx'd: IBS 2000
                                  Hysterectomy (fibroids) 1999
                                  Laminectomy 1989
                                  Dx'd: Degerative Disk Disorder 1989

                                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                                    Comment

                                    • #10
                                      WHAT IS MSM? aND HOW DO YOU USE THE ALOE VERA? mARYSXX

                                        Comment

                                        • #11
                                          Magnesium Oxide helps me when I am in a bad flare. Other tricks are Prelief, Baking soda, Diflucan, Claritan D, Darvocet, Benadryl or Ativan. That right there is my arsenal! Daily I take Elavil, Hydroxyzine, Hydro-Eye and Baclofen/Lidocaine suppositories. I only whip out the meds in my arsenal for a flare! Hope this helps.
                                          Blessings and Hope

                                          Current Meds.
                                          OFF MY MEDS
                                          Vivelle Dot: .10 changed every 72 hours
                                          Compoounded Progesterone 25mg/night

                                          Current Supplements
                                          Hydroeye: 2 pills AM

                                          Diagnosed
                                          1995: Endometriosis
                                          1998: Interstitial Cystitis
                                          2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
                                          2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
                                          2012: Laparoscopic Removal of Adhesions and Staples

                                            Comment

                                            • #12
                                              Helped dramatically by PT

                                              I have been in a flare for several weeks now (almost always urgency) and go to PT about twice a week. Today the therapist found a trigger point during the internal phase of my session. She was able to relieve the spasm and I feel like a totally new person. My flare has gone, at least for today. I am blessed to have a wonderful PT who is so astute at treating pelvic floor issues. If you have the opportnity to find a good PT you may be surprised at how much it might help. My main symptom is urgency and the feeling I have to go all the time drives me crazy. Today is the first break I have had from that in what seems like forever! Just a thought. Ratchada

                                                Comment

                                                • #13
                                                  Pt

                                                  Originally posted by Ratchada
                                                  I have been in a flare for several weeks now (almost always urgency) and go to PT about twice a week. Today the therapist found a trigger point during the internal phase of my session. She was able to relieve the spasm and I feel like a totally new person. My flare has gone, at least for today. I am blessed to have a wonderful PT who is so astute at treating pelvic floor issues. If you have the opportnity to find a good PT you may be surprised at how much it might help. My main symptom is urgency and the feeling I have to go all the time drives me crazy. Today is the first break I have had from that in what seems like forever! Just a thought. Ratchada

                                                  Dear Ratchada,
                                                  I to know a little about trigger points. I also have fibromyalga. However I have not been able to find a pt who knows how to locate trigger points. I live in Garden city ,Ny (long Island). Also I beleive this ic could be trigger point related. Please give me some pelvic (one) exercise I can do to help with this ic. And also maybe where your trigger point is and maybe I can get a prescription from my uro for pt and have them see where my trigger point could be. Elmiron for almost five months, cymbalta, Elavil etc,etc,. I too cant stand when I have to pee every second!!! marysxx

                                                    Comment

                                                    • #14
                                                      HI! I found a great book that shows you where the trigger points in the body are. It's writting by Bonnie Prudden and it's called "Pain Erasure". After we bought it my husband and I found several main trigger points in my lower back that causes my bladder spasms. My husband used a heat massager on those points for 20 min at a time and then applied an ice pack. After a cpl weeks the points were much less painful and the spasms decreased and finally went away. Once in a while I'll get spasms from sitting in one position for a long time.....and then my husband we start all over with the therapy (he's one great husband!!) If you haven't read this book.....it's a must read! Roxie

                                                      Double Spinal Cord Stimulator surgery 8/09
                                                      Unsuccessful MiniArc sling surgery 12/07
                                                      Dx'd Hypothyroid
                                                      Dx'd Chronic Axonal Neuropathy & Myopathy
                                                      June 2007
                                                      Dx'd IC May 2006 (after suffering for 25+ yrs!)
                                                      First Cysto 1979
                                                      First Hydro 1981 (Many treatments since then!)
                                                      Collagin"Durasphere" injections for urethra
                                                      Gall bladder surgery Aug. 2004
                                                      Gastric Bypass Dec. 2004
                                                      Dx'd: Barrett's Esphogus July 2004
                                                      Dx'd: Vaginal Atrophy 2005
                                                      Bladder surgery 2000
                                                      Dx'd: IBS 2000
                                                      Hysterectomy (fibroids) 1999
                                                      Laminectomy 1989
                                                      Dx'd: Degerative Disk Disorder 1989

                                                      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                                                      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                                                        Comment

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