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IC: my biggest flaw

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  • IC: my biggest flaw

    Back in May, I experienced the end of a year-long relationship. The man was very supportive of me and my bladder symptoms...however, the bladder symptoms ARE the very reason why things fell apart. He stopped seeing me as sexy and fell out of love with me, while taking on more of a caregiver role. He'd refuse to tell me that I am still beautiful in spite of a horrible disease, because he believed that I'd "become reliant" on him saying so and never develop my own self-esteem...ironically, that very act of his did a number on the self-esteem that I did have.

    I know I'm an incredible, valuable, unique, beautiful, intelligent, sexy woman. I have a lot to offer. But I also view my bladder symptoms as SUCH a flaw, one that at times I am afraid will doom me to be alone for the rest of my life. I'm terrified that I won't be able to find someone who will accept this part of me, and still be able to think I'm beautiful, sexy, attractive, etc. It feels like a curse that makes me unlovable, even though I know deep down that isn't true.

    He was there through my surgeries, through my doctor appointments, through the nights where I was up every 3 minutes and spending hours in the bathroom. He was there when I would cry, feeling hopeless from the nonstop urgency and lack of control over my body. He was there when I gained 40 lbs from all the meds they had me taking, and I hated my body. I finally felt comfortable and accepted even when I had to go to bed every night with an ice cube between my legs.

    But he stopped wanting me, and I felt that a long time before he admitted it. My bladder plus how terrible I felt about my body from the weight gain put me in a really dark place mentally. The fact that he wouldn't ever compliment me only compounded everything.

    I know now that the good things were a facade, and that if he really loved amount of suffering I could endure should be "too much". I just have dark moments of the soul, sitting alone in front of a computer screen while my bladder screams at me and keeps me awake...worrying that this is the one thing that makes me too much to handle. Not worth it. Too much of a burden.

    I'm scared to meet someone new, although I want to badly. I've done a lot of inner-healing work in the last few months, but this is the one thing that remains. I feel like it's my cross to bear, and I don't want to be a burden - emotionally or physically, keeping someone up all night while I'm up and down every 45 minutes all night long. I try to hide it from most people I know, and they have no idea. Even if I were to meet someone, it would be a long time before I would spend an overnight visit since that is when my symptoms are at their worst.

    I make a very concerted mental effort to avoid feeling this way, but sometimes it's too much. Fear, loneliness, the fatigue of dealing with a disease that most people will never understand. I don't know where to go from here.
    28 y/o female

    Bladder Symptoms:
    Severe urinary urgency/frequency with no bladder pain; severe urethral spasms (3x 'normal' pressure). Symptoms began in 2009.

    Failed medications:
    Ditropan XL (severe retention); Hyoscyamine (made bladder spasms worse); Marshmallow Root; D-mannose; Pristiq; Cymbalta; Lyrica; Nortryptaline; Prelief; Enablex; Baclofen; Ativan; Myrbetriq, Valium Vaginal Suppositories; Amitryptaline; Hydroxyzine

    Failed treatments:
    IC Diet (diet does not trigger or improve symptoms); Hydrodistentions (x2); Bladder instillations (made frequency worse); Heating pad (makes frequency worse); Surgical removal of adhesions on bladder

  • #2
    Many of us who have IC are in long term, loving relationships. I have been married for 39 years --- 36 of those years with interstitial cystitis. There are men out there who love us for who we are.

    Have you talked with a counselor? If not, I think that could be a good thing for you to help you rebuild your self esteem.

    Sending gentle hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
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    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.

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    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


    • #3
      Maybe you should have asked him if it were HIM with this god awful disease would he like it if YOU found him less sexy or less attractive? Would he like it if you left HIM for a healthier man?? Sadly, I think women are more nurturing and no doubt you would have stuck by him for better or worse. I am sorry he did this to you but perhaps he did you a favor of leaving you now verses after you were married with children. Now you will know what to look for in a man when you decide to start dating again. First good trait to look for would be COMPASSION. My friends husband came home one day and told her he no longer wanted to be married. He didnt like the marriage/ parent thing anymore . Well long story short..she found a wonderful loving man who loves her kids and she now says her husband did her a huge favor when he left her. She has a great man and her kids love him . They hate their father and will not speak to him. Years later he told my friend he made a mistake when he left her. Now he lost a good women and his kids so in the end he lost out.


      • #4
        I am sorry that your relationship ended. I will be praying for you as you work through this both mentally, emotionally, physically, and spiritually. I agree with Donna - Maybe going to see a counsellor would be a good idea. A counsellor could help you work through your self-esteem issues as well as make you feel more confident in who you are as an individual. Remember that you have been created as a Beautiful Unique Woman. I pray that things will get better for you soon!

        *On another note, I see you are having trouble sleeping. Have you tried Elavil? Some people take it in very low doses - that did not work for me. Now I take 50mg about two hours before I go to bed and I find this to be very helpful. I just thought I would let you know what works for me.

        Well wishes and many blessings,

        Current Meds:
        1 Elmiron 100mg 3x a day
        1 Cimetidine 300mg 2x a day
        4 Gabapentin 300mg 3x a day (3600mg)
        1 - 2 Atarax 25mg at bedtime
        1 baclofen 10mg 3x a day as needed
        200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
        2 belladonna and opium suppositories as needed for pain daily.
        Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

        I have tried but failed -
        lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .


        • #5
          I've also felt sad and lonely wondering if my IC means not having a relationship. I wasn't that "good" at meeting men or dating before IC, so this has added another dimension to my uncomfortableness about it. But, what I believe now, after much support from friends, mentors here, my church community, and several professionals (cognitive coach, life coach, and a medical social worker) is...

          *Knowing I have IC now means that whatever relationship I go into in the future, already has that in the equation. So, in a way, that feels a bit safer. And since my symptom levels have been the same for a long time, it's not a roller coaster like it was the first two years. Many friendships and family relationships were damaged then. Some, frankly, weren't worth keeping, and I'm glad I don't allow people like that into my life now. Some relationships were damaged by my emotional reaction to being so ill (and at the same time losing my grandmother to cancer, my brother being sent to Iraq, and my mother's explosive anger with me/my illness during it all). I'm more at peace with my body and life now than I was then, so the IC is less likely now to damage something good.

          *My mind and my heart are not changed by my IC unless I allow them to be taken over by negativity. And I do want a partner who values my mind and my heart above all.

          *I am actually a better, more spiritually developed person due to my IC. In the eight years I've had IC, I've received much grace from so many unexpected sources - here in the IC community, from compassionate health care providers (doctors, nurses, pharmacists, social worker, physical therapists, lab technicians), from new friends who've taught me from the perspectives of their health problems, from old friends who stood by me. From that grace, I've learned to be thankful, and I've learned how to give support and compassion to others.

          *Because I've also been on the receiving end of misunderstanding and rejection because of my IC, I've also learned that how I treat others really matters.

          *I believe these things add up to making me a potentially better life partner to someone. And I do hope that someday I'll meet a man that will value these parts of me most. Truth is, I'm not willing to accept someone who won't. And if I don't find someone, I'm going to do my best to be happy in the life I have, and remember to be grateful that I live in a country where I am free to be a single woman with no restrictions on my life because of it.

          I hope this helps a little. It's a stance I'm taking. It doesn't always come easily, but I do believe that the way I talk to myself about my IC matters. I can get depressed and repeat the unpleasant things some (former) friends and family members have said to me, but I'm trying not to do that. I'm trying very hard to consistently claim the value I have as a child of God first and foremost, and that is in all aspects of my life, including relationships.
          Last edited by kadi; 08-06-2011, 05:22 PM. Reason: added clarification

          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.

          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest

          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!


          • #6
            I only saw this thread now...

            Please, do not give up hope. I am 29 years old and have been suffering from IC since age eleven...(though I did not get a diagnosis since age 22).
            I have been in a happy relationship with my wonderful fiance for the past 9 1/2 years. Occasionally we make jokes about my IC and when I feel really bad, I always tell him "You know what, honey, I am suffering from a really bad flare right now, so if I should say something unpleasant or be stressed out -which I am sure will occur- please don't take it personally..I am just in very much pain."

            I know a lot of guys (same goes for girls ;-)) that seem to be very kind, but feel to be under so much pressure when there is ANY kind of health issue involved...(doesn't have to be partner, my father could not take my health problems either...)
            If this relationship did not work out, it just means that this guy wasn't the right one in terms of compatibility...unfortunately, this basically occurs WHEREVER and WHENEVER relationships are involved and is not necessarily IC-related...

            I wish you all the best...


            • #7
              Ha, the title of this thread tempted me to do a hair-flip and say, " only flaw," hahaha.

              Anyways, I am 20, so you have more than a few years on me of experience, but understand your worry of not finding someone. In the past I have worried if I will ever find someone, and get married because so many ICers are already married by the time they are diagnosed or the onset of their symptoms.

              I envy those other ICer gals who are in supportive relationships and have someone who is involved because my parents are not even supportive! But you also deserve the validation you were searching for, and just because you have IC does not mean you should settle by any means. If either person is not getting what they need out of the relationship, it is not worth your time or energy. And although you are struggling with loneliness right now and probably still feel abandoned, it seems you may still need to find or work on fulfillment within yourself; you are important, and you have something to offer to not only a relationship but to the world that no one else has. Think about that. Do not worry about finding someone; plenty of ICers have married or found a long term relationship after their diagnosis.

              Message me and add me

              Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

              Do you have a question? Feel free to ask me anything; I am an open book!

              I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.