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I met someone and he doesn't know about my IC, what should I do?

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  • I met someone and he doesn't know about my IC, what should I do?

    In the midst of my uti drama, I've talked about it in other posts, something that I thought would never happen, especially during a time like this, happened. I met someone and I think I'm falling in love. To a regular person this would be a time of joy, to me it's extremely bittersweet. He's a great guy and so carefree, just like I wish I could be, he wants to have fun and travel the world. Things that I probably won't be able to do... I haven't told him about my IC and I don't know what to do. I had decided that I would remain single, I didn't want to meet anyone because I don't know if I can have a normal relationship with them, I highly doubt I can have sex, even masturbation puts me in a flare, no man is going to want to be in a relationship without sex. I think I'm being selfish by not telling him, part of me is enjoying it while it lasts because deep down inside I know it will end. At first I thought it would be okay to let him know the real me first, not the person I became with this illness, behind all this bitterness there's still a fun and charming person and with him I am that person again, even if I'm in pain and believe me, I've been in a lot of pain, the last month and a half has been the most painful period in my life in terms of my bladder. I'm in tears as I write this post because all I want is to be normal and I can't... The last urologist I saw prescribed me Ditropan and told me I had to learn to live like this, I could see in his face that he didn't knew what to say, he was basically telling me it was pointless to keep on making appointments which is weird because there are treatments I've never even tried. My last appointment with him was almost two years ago, that was the last time I was seen by an urologist, I don't know how it works in the Unites States but here you have two choices, you go to a private urologist which is really expensive, I was covered by my mother's health insurance until the age of 26, now I no longer have insurance, that means I had to get an appointment with my GP to ask for a referral to an urologist at the public hospital, I've been waiting for this urology appointment for a year and after spending two days in the hospital when this uti saga began in April I found out I'm still on a waiting list, that means it can be years until I finally have my urology appointment. Meanwhile I'm here suffering, in constant pain, not living life and alone. I wanted some advice on this relationship thing, should I tell him now or should I wait for him to get to know me better, to get to know the real me? I've never felt such conflicting feelings in my life, I'm so jealous of other people who can just have normal relationships and don't have to worry about these things...

  • #2
    Re: I met someone and he doesn't know about my IC, what should I do?

    This broke my heart as I read it. How long have you been seeing him? I actually found someone and married after being diagnosed. I did tell him early on, mainly because of my diet restrictions. I couldn't hide it. Luckily, I am older (early 50's) and he could not have been more accepting.

    Sometimes you just have to get creative with the intimacy!! And I know that I did eventually get to a place where I could travel and have fun. I am not as carefree as I use to be, but I am learning to adjust.

    Have you tried Elmiron? It has helped me sooooo much. I am currently dealing with some other IC annoyances, but I am trying to be patient with this relatively new symptom.

    Anyway, I think your relationship should start off with honesty. If he is kind and loving, I don't think he will bolt. If he does, he would have when he found out later in the relationship. Please know you CAN find love with IC. Open up to him. This is just my opinion. Maybe others will chime in. You are worthy of being loved my friend!!

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    • #3
      Re: I met someone and he doesn't know about my IC, what should I do?

      Thanks for your answwer Leelee52. I've been seeing him for a couple of weeks, I can't do much because at the moment I'm home bound because of my bladder, I haven't felt okay ever since I had a uti in April, doctors say the uti is gone but my bladder still feels like hell and I can't go out or do anything fun, I'm always in the bathroom and sleeping is a nightmare. He's just so young and sex seems so important to him, it is to me too, I'm a human being and I have needs, unfortunately acting on them would get me in a lot of pain and believe me, I don't need more. I've tried Elmiron but I only took it for two weeks, I have Irritable Bowel Syndrome and it made me really sick, it frustrates me so much that I can't take it I want to tell him but I'm so afraid, I've been alone for eight years ( I was diagnosed in 2010) and I had already given up on love and relationships but this feeling is so good, even with all the physical pain I can still feel a little bit of joy when I talk to him. I believe I'm severely depressed because of my IC, it has taken away everything I ever dreamed of, I don't know other reality than this one, a reality of daily pain, of just getting by each day, of feeling happy because I was able to make it to the supermarket across the street without needing to pee, I'm so tired of all this...

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      • #4
        Re: I met someone and he doesn't know about my IC, what should I do?

        Whether (or when) you tell him is up to you. Am I reading correctly --- that you've been diagnosed with IC for two years, but the bad pain started about two months ago? If that's correct, you hopefully will get back to where you were before that UTI hit. Are you on any medications for your IC? following an IC diet? drinking enough water? You might want to start a diary to try to identify what causes pain for you.

        Also --- some people who had side effects to Elmiron find it is the capsule itself that was the problem --- and if they empty the capsule into water and drink it, discarding the empty capsule, they tolerate it well.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        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: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

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

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        • #5
          Re: I met someone and he doesn't know about my IC, what should I do?

          I was going to mention the same thing as Donna...emptying out the capsules!! I had to do that because it was horrible on my intestines! I had bad diarrhea and blood in my stool. I had a colonoscopy and it showed that 75% of my colon was inflamed. I stopped the Elmiron for awhile and then started emptying the capsules and I have not had ANY problems and after about six months I never have pelvic pain and I urinate like a normal person!! Don't give up...see if the doc will be willing to let you try it again. If you decide to talk to the guy about this, let him know it does get better!! Of course, like Donna said, it is all up to you! Good luck!!

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          • #6
            Re: I met someone and he doesn't know about my IC, what should I do?

            The problem is that here in Portugal Elmiron is called Fibrocide and it doesn't come in capsules, it's just pills, we don't have the capsule option here I hate living here so much, we don't even have something like AZO for when we have a UTI, I can't buy it online because they don't accept my card, whenever we have a uti the only thing we have is Urispas, it does absolutely nothing for me, it's complete agony having a UTI here, I'm terrified of getting another one and I'm still not 100% sure I got over the last one because I still have so much pain, urgency and frequency. No Donna, I was diagnosed with IC in September 2010, tried Elmiron right away and it seemed to work because in a few weeks I went from going to the bathroom around 100 times a day to just 20, to me that was life changing, unfortunately my IBS couldn't handle it and I had to stop taking Elmiron. My main symptoms are extreme urgency/frequency and 've been trying things like Ditropan, Betmiga, all of them cause retention so I never really took them more than a couple days to see if they really work. It's been around two years since I've been on any meds for my IC, right now I'm just following the diet, I'm very food sensirive, Ive been on the IC diet since 2011, I do feel a lot worse when I eat something I know I shouldn't but for the most part I'm always in pain and sleep deprived, my urgency/frequency won't let me sleep. I try to drink as much water as I can on a daily basis, I really don't think that's a problem.

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            • #7
              Re: I met someone and he doesn't know about my IC, what should I do?

              On my goodness, I am so sorry. I wish there was some way to get the capsules. Continue with the diet for sure. Can you get the Desert Harvest aloe Vera capsules online?

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              • #8
                Re: I met someone and he doesn't know about my IC, what should I do?

                My husband and I have been married since I was 19, and he was in the waiting room with my parents at age 15 for my first lap/cyst. We joke all the time about the "sickness and in health" part of our vows and when are we ever going to get to the health part. I won't lie to you and say that I don't have myself daily and hate the burden I feel like I am. But in sickness and in health. If he's a good man, which is the only type you deserve, he'll love you even more for the strength you have to go theu all this and will hold your hand to help with your pain. You deserve NOTHING Less! Ease him into it and show him the real you. IC is unfortunately part of the real you too.
                Amanda
                MommyGoddess


                Endometriosis since 2000
                Andenonmyosis since 2000
                Interstitial Cystitis 2015 (probably 2000)
                Back injury 2001 and many more times since lol

                Too many surgeries to count


                Elmiron 100mg 3xs day
                Amitriptyline 25mg once a day
                Promethazine 25mg as needed

                Radio frequency ablation on nerves in back 2016
                hypogastric plexus block 2017

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