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Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome: A

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  • Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome: A

    The results of this study come as no surprise given that we often see IC symptoms begin after some sort of trauma, such as UTI, muscle trauma, surgery, childbirth, etc. So this study confirms that for a very small subset of patients childhood abuse might be a contributing factor to the onset of their IC but it DOES NOT suggest that the majority of patients out there have been victims of abuse. - Jill

    Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome: A case control study - Abstract
    Mon, 09 January 2012

    Department of Urology, Queen's University, Kingston, ON.

    The impact of early lifetime trauma on symptom severity and quality of life of patients with interstitial cystitis/bladder pain syndrome (IC/BPS) has not been fully elucidated. We wanted to determine and compare the prevalence and impact of childhood traumatic events, with an emphasis on childhood sexual abuse, on patient symptoms, quality of life and other biopsychosocial parameters.

    Subjects (female patients with IC/BPS and controls without IC/BPS) completed psychosocial phenotyping questionnaires, including a demographics/history form, and validated questionnaires focused on presenting symptoms (IC symptom indices, pain), psychosocial parameters (depression, anxiety, pain catastrophizing, sexual functioning, social support) and quality of life. Participants also completed the Childhood Traumatic Events Scale.

    Questionnaires were completed by 207 IC/BPS patients and 117 controls matched for age, partner status and education. It was found that before 17 years of age, the IC/BPS cases reported higher prevalence of "raped or molested" compared to controls (24.0% vs. 14.7%; p = 0.047). Within the IC/BPS group, cases reporting previous sexual abuse endorsed greater sensory pain, depression and poorer physical quality of life at the present time compared to IC cases without a sexual abuse history. In the controls only, those reporting previous sexual abuse endorsed more depression, anxiety, stress, social maladjustment poorer mental quality of life in the present time. When the analysis was corrected for potential multiple comparison error, none of the findings remained significant in either the IC/BPS or control groups.

    Childhood traumatic events, in particular sexual abuse and extreme illness, are reported as more common in IC/BPS patients than controls. Early trauma, such as the occurrence of sexual abuse, is associated with some differences in patient adjustment (e.g., pain, quality of life, depression) but this impact appears to be, at most, very modest.

    Written by:
    Nickel JC, Tripp DA, Pontari M, Moldwin R, Mayer R, Carr LK, Doggweiler R, Yang CC, Mishra N, Nordling J. Are you the author?

    Reference: Can Urol Assoc J. 2011 Dec;5(6):410-5.

    doi: 10.5489/cuaj.11110
    PubMed Abstract
    PMID: 22154637
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  • #2
    Interesting. I remember when I first got sick back in 2003 , not yet with the IC, but with severe burning in my throat I was referred to the pain rahabilitation clinic here where I live. They asked me all these questions about whether I was ever sexually abused. When I told them that I was not, they seemed as if they did not want to accept that answer. They then tried to tell me that most all women who have chronic pain issues usually have some sort of abusive background. I can not believe that. My illness started with a virus I got after I had a flu shot. I believe that most people with IC or chronic illness got it from some sort of virus or bacteria or attack on the immune system, not from being abused.



    • #3
      I dont really see the connection....maybe Im missing something
      Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

      I have moderate-severe IC

      Currently stopped taking all medications due to pregnancy


      • #4
        Well, if you're young enough and penetration is involved there can be pain and injury, just like with an infection, hysterectomy, and all other triggers. But focusing on this alone is dumb IMO. Yeah, we get it. Trauma to the bladder leads to higher incidences of IC.
        • 27 year old student
        • Had symptoms since I was 5
        • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
        • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
        • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
        • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..

        Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

        What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

        What didn't work: Elavil, vistaril (12/22)


        • #5
          The impression I've always gotten from this is that people use it as more evidence of IC being a mental disorder and not a physical one. The proponents of this theory think that patients who were abused are interpreting their mental negative feelings about that area into physical pain. Someone please correct me if I'm wrong?

          I'm very glad that this misconception is being dismissed.


          • #6
            The only reason "they" came up with this whole sexual abuse/trauma theory is because they want to blame this disease on something, anything really just so "they" can say "they " figured it out!! It is all a bunch of crap. I never put much faith in what "they" say. Hell, who are "they" anways? Some university that did a trial on a small number of people! Not very reliable in my opinion. It is almost like when I read in the paper one day that butter is bad for you,very bad, 'they" did a study and found that it is a killer. Then a few months go by and all of sudden, butter is good for you now. I mean these are just theories who were made up by people, regular people like you and me. They are Only opinions, that is all.



            • #7
              Well no one knows for sure what happened with me but back when I was a young girl in the 60's, around 1964, I had to have surgery. I was very sick and they thought it was appendix.

              Fast forward to years later. I am an adult, IC diagnosed in high school although I had been having some symptoms for years. I got my old medical records from the hospital on that surgery.

              Records showed that my appendix was healthy although there was infection around the outside of it as well as all around my bladder as well as my female organs.

              I was in the hospital for 10 days, 4 shots a day of penicillin. I have no recollection of abuse per say BUT my home life was far from what I would call normal with a father who was a heavy drinker and other things. I guess the Dr. told my parents that had I been older they would have thought it was a sexually transmitted disease. Back then things like this weren't investigated like they are now.

              So I don't know but I definitely had trauma to that area of my body.

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

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              • #8
                I was diagnosed with IC at age 37 and fortunately have never been sexually abused. I agree with other posts in that I don't think IC comes from abuse or mistreatment. I believe IC is an autoimmune condition.

                What about men who have IC? Why weren't they included in the study?


                • #9
                  Originally posted by needsrelief View Post
                  I dont really see the connection....maybe Im missing something
                  Hi I'm Patty and I was wondering do use the IC Aloe Vera from Healthy Life Harvest? Because I wanted to try them?

                  Please let me know how it works for you.



                  • #10
                    I understand their hypothesis.

                    Sexual abuse does lead to a lot of chronic pain conditions. This is what certain doctors describe as the pain "being in your head." This does happen and does exist.

                    I don't however think IC falls into this category. IC seems to be a real autoimmune/inflammatory disease. I think perhaps sexual abuse only affects IC in the sense that it causes the initial damage, much like a UTI or surgery would. Plus the stress that follows after it.

                    But this is the way research works. To many on here, this is common sense. Research does not see common sense because sometimes common sense is wrong. It explores every possibility. This is not them trying to pin this on sexual abuse or setting us back; they're not saying sexual abuse causes it. Just saying sexual abuse seems to be slightly correlated with it. Then more studies will determine why that correlation exists.

                    Since this is such an understudied condition, ANY research is good research, even that which ends up in dead ends.


                    • #11
                      Because of these supposedly conclusive studies, doctors have not taken me seriously. On base they always write me off as someone who has psychosomatic pain, even though I do NOT think about the experience ever and am over it. I am angry that people try make these correlations without properly defining or explaining any correlations.

                      It would make sense if they explicitly said "these women were more likely to encounter physical trauma to the ____ resulting in (__ condition)." Rather than this vague paragraph that anyone could draw their own conclusion from.
                      I have vestibulitis vulvodynia which in turns causes bladder spasms--or so says my urologist.

                      What I do:
                      Percocet: Up to 10 mg a day (usually 2.5 mg at a time)
                      Potassium Citrate every morning, sometimes again during flare ups at night
                      Vitamin D gummies
                      Multivitamin gummies
                      Osteobiflex 3x strength
                      Primrose Oil
                      Elavil/Baclofen Cream before and during flare ups
                      Warm Baths as needed
                      No soap
                      Lower oxalate diet

                      Didn't work:
                      Elavil made me suicidal and apathetic at 2 different doses when taken orally
                      SSRI's caused mania
                      Trigger point injections x 6 made burning worse but less frequent
                      Valium 5 mg did nothing
                      Gabapentn + Pregabalin caused rashes and shallow, labored breathing + the worst headaches I've ever felt
                      Vicodin 10 mg not enough to mask the bladder spasms
                      Lidocaine gel lasted less than half an hour and hardly covered the pain
                      Micoconazole nitrate allergic to
                      Oxybutinin extreme side effects made it impossible to take for more than 2 days (sand-dry mouth and eyes, falling asleep at work on one dose)

                      I also have developed chronic dry eye syndrome which I honestly believe is either a result of one of these drugs, or an autoimmune disease.

                      I also have permanently locked TMJ.


                      • #12
                        "Well, if you're young enough and penetration is involved there can be pain and injury, just like with an infection, hysterectomy, and all other triggers"

                        The above statement from Nekura is completely correct. My urologist also discussed this with me and told me that it can also be a contributing factor if you are raped when you are older. It doesn't just apply to childhood abuse.



                        • #13
                          Btw, this type of research is not trying to claim that most people with I.C, or even the majority of us have sufferred from abuse. It is just saying that some people who HAVE been abuse victims can end up sufferring I.C symptoms as a result. This can also apply to anal rape, which can trigger pelvic floor dysfunction.


                          • #14
                            Sure I was abused, BUT...

                            ... I was originally offended by this topic because YES I am an abuse survivor, but never had any problems with my bladder until I got into a dirty hot tub at age 37. Then I immediately developed my first UTI, Interstitial Cystitis, and then chronic widespread neuropathic pain.

                            My psychiatrist even tried to categorize me, saying "Another of my abuse survivors has IC." I was offended, because I GOT IC FROM AN INFECTION. I don't remember the bulk of my abuse, but am told it was severe (psychologically) so that would be why I don't remember it. So what did it have to do with developing IC?

                            Now, five years later, I'm starting to think differently. I read somwhere that IC tends to happen to people with type A personalities. I have always been an anxious and perfectionistic person. Also, as a survivor, my attention is easily drawn to the suffering of my body. With IC being VISCERAL pain, my panic is heightened.

                            I've also read in various places that relaxation, yoga, and meditation help a lot with IC. But because I spent my developmental years in a state of fear and stress, I never learned how to really 'relax.' My siblings have used hypnosis that led to disastrous false memories, so I steered away from those sorts of things.

                            A third thing that confuses me is the chronic widespread nerve pain that came with my IC. I've never met anyone else who gets those stabbing pains as far as their face and hands. But I get sharp and stabbing pains everywhere, with every food my bladder doesn't like. And now headaches.

                            I wonder, could all this pain and drama be because I have a "hyperactive" hippocampus, which a psyche once said was caused by the excess stress hormones from my childhood?

                            I don't know. All I do know is that I didn't get any infections or bladder problems directly as a physical (bacterial or other infection) result of physical abuse.
                            Exposure to an unclean hot tub 2-17-07 FIRST UTI
                            (Got ringworm-like sores from it before)
                            (Someone else got what looked like 'eye herpes')
                            (My husband got an ear infection. We were all just sitting there!)
                            SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                            TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                            Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                            CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                            MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                            PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD


                            • #15
                              Thank you for being open and brave and sharing your story of survival with us Tara. I know this is a very difficult subject to talk about. I also have the 'Type A' personality that you describe and find it impossible to relax due to long standing anxiety and stress which started in my teens. I think you are right that we can never know for sure whether these emotional/psychological factors and the resulting changes in brain chemistry contribute to I.C, or to what extent, but it remains a strong possibility that they might be at least one piece of the jigsaw. I often wonder whether high cortizol levels might play a role.
                              I hope you find something to help with the stabbing pains and headaches, and that you can get to the bottom of what is causing them...

                              Jem x