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Please - some hope and help?

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  • Please - some hope and help?

    I feel so bad today. I hate myself for having so much wrong with me.

    I know it isn't my fault and the way I'm reacting isn't rational. But that doesn't change anything. I know I shouldn't feel bad for myself and that there are others worse off than I. I know I'm luckier than some.

    I guess it went like this, though this isn't an isolated incident by any means: Last night my fiance and I were at an after-party but we had to leave a little early (if you consider 2AM early) because of me - my medications were making me sick and dizzy. I woke up pretty early with terrible stomach and back pain. I took some medicine (which he had to wake up and cut in half for me) and laid back down trembling. I woke up a few hours later feeling a little better, and we were going to try and have sex. I went to the bathroom and afterwards my bladder/urethra was sore (this is a main symptom) so we couldn't - we just laid down and I cried because I was so frustrated because this happens all the time and I feel like I'm letting him down, like I'm a terrible person to be in a relationship with, like he could find so much better. I have low self esteem when I'm in pain. After an hour or two I felt better so we tried again and things were okay for about fifteen minutes but then we had to stop suddenly when I started to feel achy and burning (another main symptom aggravated by sex). As you might guess, this made my self confidence fall ten-fold.

    Also when I was visiting home last week I was in a flare, and my mom made a comment I can't remember verbatim but something to the effect that she was so sad because there was nothing she could do to help me. This also made me feel very guilty, as my whole family has to watch helplessly as I go through this.

    I know all the advice I need to hear - that it isn't my fault, that sex isn't everything, that if he loves me he'll understand, which he does, etc. I just needed to vent I suppose. I can't believe the depths of depression my symptoms send me into. It's almost 7PM now and I'm having intermittent stabbing pains in my pelvis. It never stops. Something, somewhere, somehow, always hurts.

    I just want it to stop.
    Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

    Medical research addict.

    Likes: hot baths and naps with cats

  • #2
    I am so sorry you are in pain, and my heart really does go out to you!! I know what those low self esteem moments feel like, especially to do with sex.... It is such an intimate thing, and can be SO akward no matter how much you love the person or how committed you are to each other, it feel slike you are failing as a partner when you are unable to complete simple tasks like that right?..Im hoping that your bf is sensitive and supportive to you!

    HERE IT IS I AM GOING TO TELL YOU. THIS IS NOT YOUR FAULT. There is nothing you can do that you are not already doing I am sure. Sex really is NOT everything, but it sure as hell can put a damper on things when you are unable to, or feel like you should just "suffer through the pain" and moan through it... if you know what I mean, I have been there. I would like to tell you that it gets better, (and I hope it does for you!!) it did for me! and I was in the SAME boat when this all happend. I would have to stop right in the middle... and I felt horrible. I felt like I wasnt good enough for him or at sex , and that he should just move on. I thought I would never be able to have GOOD sex again!...I thought that by me always having to say "no", or "it hurts please dont go deep" or "maby we hould change it this way so it doesn't hurt...".. I thought it might kill the sex life that we had... which at the time was pretty much non existant...

    Anyways needless to say, this has not happend. I have my confidence back (although trust me it took awhile)... and I am able to have good sex again with no pain and no burning. I have a more in tune boyfriend... and now I dont even need to say anything he just knows by my body language whether I am ok or not, and always asks if he is hurting has almost become more of a LOVE thing rather than a sex thing ya know?

    I hope that I can give you some hope Please remember that its not your fault your body is hurting, you did not CAUSE this, and you are doing your best to get through it with what you have. We all understand, and we have al been there too.

    This morning I was sitting on the toilet straining to pee because it drives me NUTS when I still have pee left in my bladder... I curse it when it does that... but I know that it needs something, its telling me that.... So I immediatley went and took an antihistamine. An hour went by and my bladder nearly dissapeared...we just learn to listen and cope and live day by day.

    What have you tried?? If you need any advice or just wanna talk you can PM me

    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

    Me in my graduation gown!


    • #3
      You should never feel guilty about having IC --- there is nothing you did to cause it.

      Sending warm healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Have you tried physical therapy? I went thru a period where sex and sitting were very painful. PT really helped! Sending you a big hug!
        Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

        I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

        Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

        I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!


        • #5
          Things will improve! They really will!

          I see that you are on meds, but have you tried any stretches or exercises to help ease the tension in your pelvis?

          This book is a great help for those of us who can't afford physical therapy:

          There are also techniques in there that your boyfriend can help with, like the trigger point therapy. This might even help your relationship because the boyfriend won't feel like a helpless observer when it comes to your pain. It's a goal you can work towards together.

          We have all been through this and sometimes it just helps knowing that it won't be forever.


          • #6
            I also deal with those frustrations. It is not your fault, remember that.

            And per above recommendations, I highly recommend Pelvic Floor Therapy (Physical Therapy from a PT who is trained to specifically work with the Pelvic Floor).
            Currently dealing with IC (diagnosed May 2001), Fibromyalgia (January 2000) and ADHD (1998 sometime) and vulvodynia (Jan. 08)

            I work in the schools helping students with disabilities. I am a speech language pathologist working as an Assistive Technology Specialist. A very do-able job with IC.


            Meds that I take:
            Elmiron 2 x day ; Effexor XR 37.5 ; Ritalin;
            Nasonex; Atarax 10 mg (night); Lidocaine 5%; monthly B-12 shots; Pyridium as needed

            Meds I am trying

            Supplements that help:

            Condroitin Sulfate; Calcium Citrate; Magnesium Glycinate; Olive Leaf Extract; daily probiotic

            Other treatments that help:
            Physical Therapy for PFD; Massage for Fibro; Chiropractic for Fibro; IF Unit (like a tens unit) for pain


            • #7
              Unfortunately Molly, I have no words of wisdom to help you. The only thing I can tell you is you are not alone.
              You took the exact words out of my mouth in your post. It's hard being in such a serious relationship and feeling like you are inadequate, or letting your significant other down.
              I know that having sex is not by any means the most important part of a relationship, but the fact that we can't have it like normal people because of IC and the guilt it causes makes it important.
              My boyfriend is the best person I've ever met, but he is like a normal guy and still likes sex. He has never pressured me in any way, and he always makes me promise to stop if it hurts (which I don't always follow because I know I'm at least helping him out physically). But sometimes when we do have intercourse, it starts hurting after and I am in pain and he feels so guilty.
              It's an awful vicious cycle that hopefully someday we can master as a couple.

              I'm just glad to know someone else feels like me out there. I feel less of a woman in my relationship, and I feel like I can't meet my boyfriend's needs. Not because I feel I have to, but because I love him.
              I am looking forward to the day when this isn't an issue anymore.

              Until that day, hang tight Molly. I'll be doing the same. Good luck
              Age 20
              Full time college student

              Diagnosed with IC this August
              Symptoms from last September
              Also have IBS

              Main Symptoms:
              Constant pelvic pressure- had to give up wearing jeans
              Flare ups that feel exactly like bladder infections every other day or every few days
              Urinary Frequency and pain
              Painful intercourse
              Stress increasing IC and IBS symptoms

              What I’m on:
              Elmiron x3 daily
              Pyridium (as needed)
              Vesicare x1 day
              Adderall 10mg x1 day
              Tramadol (as needed)
              Over-the-counter pain meds (as needed)
              Hydrodistension about every 2-3 months

              What I’m also trying:
              Hot baths
              Drinking plenty of water
              My boyfriend’s support
              Trying new stretches and strengthening exercises


              • #8
                This is not your fault!!! Tell yourself that every time you start to feel down, even if you don't believe it. Just keep saying it and eventually you will begin to believe it.

                You are not alone. I also have a lot of problems with intercourse, and it is very frustrating. My partner has a hard time finishing fast enough if I'm telling him not to go deep, to slow down, this position hurts. And then if it goes on too long, my urethra starts to hurt very badly. It's very hard for me to not feel guilty about this, but I try to think about it in other ways. It shows that the guy I'm dating is a good guy and it makes me trust him more for putting up with my IC.

                I hope you feel better soon.
                Medications and Supplements:
                D-Mannose powder

                Lacto-ovo-vegetarian and IC diet
                Positive mental attitude!