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Pain and a mother

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  • Pain and a mother

    if so, would you be willing to talk to me aobut some issues/ topics/barries etc you face? I am writing a book on pain and motherhood and need moms to talk to. I can keep your info annoymous and you can see I have been on the boards for like 10 years. Please share your story, fears, triumphs etc.

    Thanks. Melanie

    PS please feel free to pass on to any mommy friends with any sort of pain
    I am blessed to have an Indiana Pouch now
    IC since childhood, finally diagnosed at 31 yo
    PFD/Pelvic Pain,SI joint and LBP
    Low Back Pain s/p spinal fusion at 19 with more nastiness in back
    Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
    Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
    Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
    Hysterectomy 2/3/12 w one ovary removed
    Dry Eyes
    L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
    Still have issues, still take meds.

    I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
    Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

  • #2
    Newly diagnosed and a mother and really scared

    I'm newly self diagnosed and a mother to a wonderful, smart, funny 2 year old boy. I'm so scared I won't be able to be as good of a mother now that I likely have IC. I would love to talk to a fellow ICer with kids to see how you cope and just to relate to.
    Hope to hear from you.


    • #3
      hi i have pcos and really felt the need to have a child because i knew it may b hard to conceive i tried for years with no luck well long story short after the birth of my beautiful daughter i started having uti like pain which then came vulva burning a constant urge to urinate ,back pain and either bladder or uterus pain not sure which one is hurting probably bladder well what emotional hurts the most is the birth of the child i wanted sooo badly has affected my health traumatically and possibly for the rest of my life somehow i actually want another one but i have to get this under control 1st anyhow this has been very hard for me i work fulltime cook, clean ,its just overwhelming when im in pain and cant even have a normal sex life because sex is painful as well its really awful i have to go cook a lasagna i cant eat for my hubby now lol gonna do a white one for myself i really push myself everyday to accomplish everything ill talk to u more if ud like ttyl
      Edit Value
      I'm Faith - pain started 6 wks after the birth of my daughter a lil over a year ago .my pain is very deep in pelvis and a few uros have suspected ic ,pain started as a uti and then the deeper pain came ,i was fed numerous antibiotics without an infection present an eventually the uti pain went away and a deeper pain replaced it i also have ,possible pudendal nerve pain or vulvadynia ,and pcos ,insulin resistance


      • #4
        I would be happy to join in. I have 5 kids and I homeschool, so maybe it would be an unusual perspective for your book? :-) pm me if you would like me to email you.
        Wife of Andrew and Mom to Asher, 8; Raina Beth, 6; Oberon , 4; Shiloh, 2; and Hava, 1

        I am a Homeschooling mom, Autism advocate, and manager of a busy household of 8.


        • #5
          I'm a mother of 2, my oldest has special needs. It is hard working full time and raising 2 kids. I have many fears about my future and caring for my precious girls. I'd be happy to help. Pm me.
          Current Meds:
          IC Diet
          Elmiron 100mg 3x Daily
          Elavil 25mg at bedtime
          Atarax 25mg at bedtime
          Valium- when needed
          Long baths
          Playing with my 2 daughters, Julia 5 yrs & Natalee 2 yrs

          Me and my hubby~ my rock!

          Peanut #1

          Peanut #2


          • #6
            Mother with IC

            Hi...I am a mother of two. They are 9 and 11 now but have had to live with mom and IC for 4 years. I have been on long term disabiliy for the past 3 years. I live for my kids and do anything and everything to give them a normal life. They ask me all the time if I will ever teach again. I am so lucky that they are understanding and will do extra around the house when I am in bed in pain. I honestly think they keep me motivated to fight IC and be my own advocate to try everything to maintain a liveable life. It isn't easy for sure. My husband works long hours so I am managing the house. My family live a province away. When they visit I do have help. I would be willing to answer any questions. Kristine
            Interstitial Cystitis: Elmiron and Hydroxyzine
            Depression/Anxiety: Remeron, Cipralex and Clonazepam

            *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
            * 2 hydrodistentions :

            * currently on "Nabilone" for pain management

            Taken the following:
            Gabapentin no relief but could tolerate it
            Lyricano relief but could tolerate it
            Cymbalta severe depression/anxiety etc.
            Topamax severe nausea and weight loss
            Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

            What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

            Other conditions...
            Vulvadynia (amytriptaline cream - no longer using to to irritation)
            Severe IBS
            Chronic Sinus pain (nasal rinse as need)
            Lower back and sacroiliac joint disfunction

            Allergies: Erythromycin, scents and detergents


            • #7
              Re: Pain and a mother

              Melanie, I am replying to one of your old posts from 2002. I don't have much time to research the internet. My adult daughter has had IC since childhood, and now we are considering surgery. Please do you have any advice (it looks like you had bladder surgery), and can you recommend any I.C. doctors and surgeons? Phyllis (PJoy)


              • #8
                Re: Mother with IC

                Also, could you reply to my email instead? It is easier to find your response via my email, which is [email protected].