No announcement yet.

need advice!

  • Filter
  • Time
  • Show
Clear All
new posts

  • need advice!

    Hi everyone. This is my first time posting, but I lurk quite often. I found out I had IC 4 years ago. The entire time I've had it I have been single. About 5 months ago I started dating a really great guy. I have not told him about my IC. Part of the reason I haven't told him is that I don't know how to describe it so that it won't sound crazy. I think of different ways over and over in my head and they all sound just nuts. I have been pretty fortunate that much of the time I'm in remission and it is just when I flare that I worry about it affecting him. But the real question I have is this: We haven't had sex and due to moral/religious beliefs we have, we would want to wait until we get married. So, I've never had sex and from being here on the message boards alot, it doesn't sound good. So I have nothing concrete to tell him about it, yet is seems like I should say something. I don't want to say nothing, get married, find out sex is intolerable and then have him trapped in a sexless marriage. I'd rather just break up with him than put him through that for the rest of his life. But I just don't know what it would be like. I suppose it is different for everyone, but I don't know. Is it like, you can have sex some of the time, just not when you're flaring, or you can only do it in certain positions, or is it like everytime you do it you flare? If so for how long? I just don't know if it is hopeless and is it like we would NEVER be able to have sex. Some people on the boards haven't had sex in like months or years. Is that typical or do they just have more severe cases of IC? What do you all think??


  • #2
    Well, I think you should be honest with him and tell him and see what he says, It wont hurt to tell him you know.
    Angela aka sleepyangel30


    • #3
      Hi there

      First, don't panic yet

      While some people have had to become celibate, ther are also lots of us ICer's out here who are able to have satisfying sex lives. For some of us, that has meant finding alternatives to vaginal penetration, and for some of us, it means finding positions that work best, using lots of lubrication, and other little tricks we've picked up along the way.

      My husband and I still manage to have a satisfying sexual relationship -- yes, we do have sex a bit less often since IC invaded our lives, because I tend not to want to if I'm flaring, but we still have a regular and exciting sex life despite it.

      First of all, I think you should introduce this man to IC before you start talking about how it may affect your sex life. Why not print out some info from this site, and share it with him when you're having a quiet evening together at one of your homes? You could also get a copy of The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin, and share that with him. Explain to him that you have a chronic condition that affects your bladder, and while you have lots of remissions, sometimes you don't feel well -- then share the info you brought with you with your guy. My guess is he'll be really receptive.

      If that goes well... maybe you can discuss the sexual aspects of things with him later. The fact is, you aren't going to know how you react to sex until you actually HAVE sex... and if that is after marriage, good for you! If you discuss it with him, you can tell him that your condition might affect your sexuality down the line, but that you'd like that to be something you explore together when the time comes.

      I bet he'll be supportive

      PM me anytime if you want to chat....

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.


      • #4
        Thank you for the encouragment!! I happen to be in a flare right now and that tends to be when I start to panic and think it is a hopeless situation. Then when I'm feeling better I calm down a little. The sexual aspect has always been what's concerned me most about my IC. The pain and discomfort I usually just deal with without telling anyone and I'm lucky that I can go months with little to no symptoms and that seems to work, but I'm just so scared that I can't help having any IC sexual issues affect who I'm having sex with. That is definately the worst part for me...knowing it awould affect someone else. But thank you so much for a positive response that there is some hope in that regard!! You don't know how much that means to me!!



        • #5
          Don't Worry

          I agree with Sleepy on being honest. I think you should introduce him to IC and let him know the potential impact.

          I have been to some IC meetings here in Houston and I always see very loving couples there. It is very interesting to me because the couples are so obviously happy and close. Many of the women that don't bring husbands often remark at how well their husbands support them. I believe this is due, at least in part, to the fact that the husbands understand the situation clearly and have been informed so that they can provide support. Jala.


          • #6
            I developed IC within two years of marrying my husband. I have to say that I actually think we are much closer than we could have been if both of us had enjoyed good health during our 32 years of marriage. Somehow, working together to have a satisfying relationship has brought us even closer.

            I agree with the suggestion that sharing a copy of Dr. Moldwin's book is an excellent idea.

            Sending an encouraging hug,
            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