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

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  • #16
    I do think that stress aggravates IC syptoms, whether long standing stress or recent stress.

    On the boards lots of people report flares from stress.

    I too am a type A personallity, not to the degree that I used to be.

    I have never been abused.

    I think I have always had IC, but was not diagnosed for 30+ years.

    I feel that because I was not diagnosed with this earlier, but had lots of medical problems over the years. Probably most of which stem from having IC and or other things have been made worse or harder to diagnose due to IC symptoms not fitting other problems symptoms.

    I think due to having to diagnose and often treat myself for many medical issues, I am more in-tune with my body than most people. This I think often comes across as being a hypocondriact (sp), and often my complaints not taken as seriouly as they might have been, hence taking longer for most things to get diagnosed, and more Dr. visits, more time being spent sick etc.

    Thankfully I have found a really good Dr. who listens and believes what I tell him. knows I am very in-tune with small changes in my body and knows me well enough to treat things sooner rather than later, and that lots of things are interconnected.

    I get frequent right kidney pain, headaches, and don't sleep as well as a lot of other medical problems, but the above ones have improved with treating my IC and urinary retention.

    I know that many times over the years of seeking diagnoses I have been told it's all in my head, and I am sure just as many times Dr. thought it but didn't say it directly to me. Each time I have been told it psyco, in the end it has ended up with a diagnoses, that required surgey or extended treatment.

    But once labled that I think often it follows you, even if later proven not to be true.

    I think IC may have many things that tip the cup for it to show direct symptoms. My bet is on an undetectable bacteria or microbe.

    Just my 2 cents. MG
    My are with you all. May you all find a way to peace and joy in your lives.

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    • #17
      I am certain I got IC when I had my son. The birth was traumatic. He was facing up with the cord around his neck two times. He was dying so they used forceps. Not enough time for a c section. All my symptoms started then. 7 or 8 years to get diagnosed. I've had it 16 years now.

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      • #18
        Is your son okay?

        No Cerbral Palsey or anything like that? I've heard stories about IC starting with hospital proceedures 'down there'. A girl I met on the COB Foundation website got IC from a birth control procedure. Her guess was an infection from the catheter.

        Originally posted by Elizabeth C. View Post
        I am certain I got IC when I had my son. The birth was traumatic. He was facing up with the cord around his neck two times. He was dying so they used forceps. Not enough time for a c section. All my symptoms started then. 7 or 8 years to get diagnosed. I've had it 16 years now.
        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

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        • #19
          I had problems with UTI's starting from my late teens. They didn't clear up quickly, and usually required 2-3 rounds of antibiotics to clear them up.

          My theory is either:
          A) It was IC all along and I didn't have UTI's - the reason that the antibiotics didn't clear them up was because their was no infection.

          or

          B) Because I had really severe UTI's my bladder is now damaged which is the reason for my IC

          I also think that stress and my IC are directly related. The more wound up I am, the worse my symptoms are. It never fails. There is (thankfully) no abuse in my history.
          Diagnosed in 2010 based on symptoms alone

          Things that help me:
          * Drinking lots of water
          * Avoiding trigger foods (alcohol for me)
          * Hot Showers/Baths
          * Meditation
          * Exercise
          * Elavil 10 mg per day

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          • #20
            Childbirth

            I had similar experience to Elizabeth with childbirth of my first child, he was already 10 days late,so we had t induce labor. which took about a week and finally the ob broke my water and took several hours of labor til i gave birth to him. but the whole time i was pregnant with him, i always felt the constant urge to go, and leaked. But i had chalked it up to being pregnant, also i always felt like he was sitting right on top of my bladder. So when shortly before i gave birth the machines were indicating his heart beat slowing down, and my ob said he had to come out now, he yelled at one of the nurses to give him the forceps, and she didn't understand him, someone got him him the forceps finally, and he had to yank him out real fast. Afterwards ob told me, most obs would have done a c-section to get him out in that situation. But anyways, i was real tore up down there, and the freq and urgency since then has only gotten progressively worse since than, that was 11-1994.
            Although I have had problems in my childhood with constant yeast infections, i really never experienced what i do have since the birth of my first child.
            I will say unfortunately that i did contract clyamidia on my first sexual encounter at the age 20, about 5.5 years before i had my son, it progressed into PID, which may have played a role I think, but i know after having my son that was the turning point where all got so much worse.
            So who knows what really started it, i had a not so great childhood I will admit, was not sexually abused. But much of my life has been very stressful and still is, so while i don't think stress has caused the ic initially, i do know that it greatly effects my ic symptoms.
            Elizabeth i do hope your son is fine.
            Dx 2005. Worsened w/preg in 94. Voiding 100 x. DMSO in 04= 7 weeks, worsened. Saw urogyno 05. Started heparin, kenalog lidocaine, helped a few hours. Referred to uro who implanted stim in 06. Trial great, w/99% improvement. Not seen same w/perm implant, leads were placed in rt. labia which caused me pain to set on therapeutic level. Leads were placed in butt w/trial stim, & not painful to turn up. Having revised 11-19, done while awake, so can ask where I feel pulses, so can be placed in butt rather than labia. W/revision, should be able to turn high & see therapeutic effect. Still need to see gyno for PFD, have terrible pain w/orgasm. On Valium supps. Helps some. IC & PFD make sex painful, hopefully stim & gyno will help.
            Previous meds: Urised= off market, Elmiron= caused gastro problems. OAB meds= retention. Hyoscomine- not help. Azo= makes worse.
            Current meds: Elival 50 mgs at night, helps w/nocturia. Loratab=pain Prozac= anxiety. Zocor=cholesterol, Fioricet= Migraines. Zantac=acid reflux. Trazadone=insomnia. Zofran&Phenergan=nausea. Atarax =pain relief. Diflucan=yeast infections.
            Supplements=Magnesium=migraines, Marshmallow root, not sure helping or not, but not hurting anything. Enzymes= digestion. Melatonin=insomnia. Stool softeners & Miralax =constipation.
            Acidophilius =gut. Gas pills. Bio-freeze=muscles. Prelief= bladder
            Chewable vitamin. Tylenol=pain. Rarely ibuprofen= intolerant to nsaids .On elimination diet since Aug Not seen help w/bladder, but w/gut. Good effect w/diet is have lost 30 lbs.

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            • #21
              Thanks for the replies! My son has struggled with mental illness his entire life. Intellectually, he is very smart. He got his first diagnosis of ADHD at 6. Later diagnosis include Intermittent Explosive Disorder, Mood Disorder NOS with anxiety and depression, Oppositional alDefiance Disorder and possible Bi-Polar. He became a chronic runaway at 13 and has had 5 psychiatric stays. The last one was for 9 months. He overdosed. Is currently using drugs. He was suicidal many times. Lastly, he tried to kill me twice and left many bruises on my body. I love him so much but finally had to put him out of my home. He is doing better overall but we still do not know what his future will look like. He is and always has been so deeply unhappy. Makes me so sad. I just continue to work on our relationship and support him in every way I can. He is 16 now. It is up to him to want and work for a good life.

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              • #22
                Taramc.: just re-read your post about your friend. I was also convinced the catheter played a huge part in this. Interesting.

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                • #23
                  in my case I got sick due to chemical interference in the body. I have never been abused.

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                  • #24
                    I don't understand the antagonistic reaction to any theory of a possible source. It is credible that there are mental sources of our discomfort. Why is that an insulting idea? I myself would like to see more on the subject.

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                    • #25
                      Re: Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome

                      I was recently referred to a pain clinic as well as another round of PT. I filled out the novel required by the pain clinic and started thinking about sexual abuse and abuse in general. They want me to see the pain psychologist and I had no idea how that would help. I was born without a Ureta to my left kidney. When I had to pee there was no warning whatsoever, no sense of urgency until the very last minute. I usually had about 45 seconds to make the bathroom. (which would mean that my Barbie doll would only have one shoe, EASY distraction) If I had an "accident" my father would beat the daylights out of me. So I learned to hold it...It was not discreet or graceful, squatting and holding my legs together so tightly so that no urine could escape. Sometimes my mother or older siblings would find me and carry me to the bathroom while I continued to hold the position. If my father found me, I would get a beating, regardless of the fact that the minute he laid a hand on me I would start to pee.
                      The fact that I had a diagnosed medical condition and was on preventive antibiotics along with 2 or 3 visits to Children's Hospital per month had no bearing on how angry he was with me. (I now believe that I have been working on destroying my pelvic floor since I was 2 years old)
                      My family also traveled the country by car. Whenever we came to a rest area, I was told to try to pee, even if I could only go a little. (enter straining) Uggh! If I was unable to go at the rest area and needed to go a few miles later, I would get at the very least a very nasty round of verbal abuse about how I am ruining everybody's vacation.
                      I have been in therapy since I was 13 for a few instances of sexual abuse that happened when I was 11, 12 or 13. There is only a slight possibility that there was penetration at that time. (I have been hypnotized and panicked when I came to that part so I forced myself out of the trance.) I am thinking more about tightening those pelvic floor muscles as a protective mechanism that was learned at a very young age. In 4 hours I am undergoing a bilateral obturator internus muscle injection. I am quite petrified of this procedure, so I asked my PT if she could give me some idea of where this muscle is. She pressed on it for me and told me that it felt like a wall! I asked how it was supposed to feel and she said something more like a marshmallow, firm and formed but soft to the touch. This gave me hope that this injection may give me some much needed relief as well as scaring me even more. So...with regard to this thread, and my new insights, I am thinking that even with my nasty case of IC, glomulations and all, I wouldn't even be close to suffering this level of distress if it hadn't been for the years of having to hold my urine, to strain, and to close my vagina up tight as a drum to prevent intruders... I would never have put 2 and 2 together without having to think about the pain psychiatrist.
                      I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                      DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                      I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

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                      • #26
                        Re: Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome

                        This is def an interesting topic for sure.

                        I was sexually abused much of my childhood.

                        I don't recall having any real problems though w/ urination as a kid. I do remember peeing my pants in school once bc the teacher said nobody else could use the bathroom and I wet myself I was about 6 years old. I do vaguely remember one time having that need to go feeling and not being able to go and telling my mom I keep feeling like I have to pee but can't. But I think it lasted like a day and it was over with. I never really had a UTI growing up - none that I recall I mean you would think I'd remember and have been treated so therefore I don't think I ever did even as a little girl.
                        My frequency began in my early 20's but I believed I trained myself to go more then most people bc I got a kitten at 17 and t would wake me up repeatedly at night and every time it did I would just get up and pee (out of habit) this led to me getting up to pee at least 1x since I was about that age. I never have had any real issues w/ urgency unless I experienced nervous tension or anxiety.
                        So I can't see a full correlation but it does make it all interesting to say the least.
                        It's been 14 months since my symptoms started acting up and still no diagnosis. Even after my doctor performed a uro-dynamics test and stated, "your bladder is aware almost constantly of something going into it. It's highly sensitive and on the small side." I have been given no treatment options and it's frustrating. I failed most OAB meds and my doctor is not surprised because I don't clinically have OAB. So now I'm trying my best to be on a stricter diet, although I admit, it's hard and I do cheat slightly. I have no pain. Just a constant pressure that feels like I carry a 20lb weight on my bladder and lower abdomen. I have had ultrasounds too and all seem clear. I started LoEstrin 24 birth control in Feb 2014 and have had no period since and I don't know if this is helping or hurting. Looking for a solution to take away the pressure. If I need to urinate often then so be it. It sucks but the pressure is enough.

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                        • #27
                          Re: Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome

                          Phillygirl:
                          You may want to see a urogynecologist and see if they can get you referred for Pelvic Floor therapy. I know the PT's have bladder retraining programs that they use. I'm not allowed to do them because of the pain, so I don't really know anything about them, but something like that could be helpful to you.
                          Cindy
                          I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                          DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                          I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                          Comment


                          • #28
                            Re: Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome

                            I did see a urogynecoligist and told her of my history of abuse. She examined me but pfd was not mentioned.
                            It's been 14 months since my symptoms started acting up and still no diagnosis. Even after my doctor performed a uro-dynamics test and stated, "your bladder is aware almost constantly of something going into it. It's highly sensitive and on the small side." I have been given no treatment options and it's frustrating. I failed most OAB meds and my doctor is not surprised because I don't clinically have OAB. So now I'm trying my best to be on a stricter diet, although I admit, it's hard and I do cheat slightly. I have no pain. Just a constant pressure that feels like I carry a 20lb weight on my bladder and lower abdomen. I have had ultrasounds too and all seem clear. I started LoEstrin 24 birth control in Feb 2014 and have had no period since and I don't know if this is helping or hurting. Looking for a solution to take away the pressure. If I need to urinate often then so be it. It sucks but the pressure is enough.

                            Comment


                            • #29
                              Re: Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome

                              I was diagnosed with IC again May of 2014 (have been in remission for about 7 years). I was sexually abused for years by my oldest brother for years and emotionally abused by both parents for years and witnessed other siblings being physically and emotionally abused for years. I lived in constant fear. I also held my urine so my abuser would not know that I was awake. I have degenerative disc disease and "failed back syndrome" ( a term used if back surgery was not successful) I have radiating pain in my leg and pelvic floor dysfunction. I certainly do believe, in my case, that living in the state of constant fear did cause me to unconsciously tighten every muscle near my pelvic area. I have had years of therapy to deal with my anger, resentment, low self esteem, etc., etc. I am doing more research on the correlation of IC and the tightening in my pelvic area.

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