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First time being intimate with IC. Scared and clueless. Any advice?

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  • First time being intimate with IC. Scared and clueless. Any advice?

    Hello everyone!
    I may be posting for the first time but I've been lurking ever since I was diagnosed in 2010.
    After 11 years single, 9 years because of IC (no sex at all), I have met someone that I truly like. We just started dating and we're still getting to know each other. Unfortunately I'm flaring really badly at the moment and it doesn't seem to be going away. We had a bunch of plans and of course this is stopping us from being together. I'm so afraid of never being able to go out again, I've had flares that lasted around 4 to 6 months Anyway, this is not why I'm posting here. I'm here to talk about intimacy. As you can imagine I haven't had sex in a long time, the last time I had sex I wasn't even dealing with IC yet or so I thought, I had no symptoms but I remember that all of a sudden sex was painful, I wasn't able to go through with it because penetration made me feel like I had to pee really bad. I would go pee and when I wiped myself there was blood. This happened two times. I even went to the gynecologist but she told me it was normal, that my vagina was just stretching and getting used to it. I became single shortly after and I never had to deal with the issue again. Less than two years later the agony began, I spent months suffering from severe urgency, frequency, pressure and pain. At my worst I went to the bathroom 200 times in 12 hours. I couldn't sleep, I was so sleep deprived I was having hallucinations. Then I discovered IC, saw an urologist, he prescribed Elmiron and the symptoms decreased immensly. I couldn't stay on Elmiron for other health reasons but I started following the IC diet religiously and that's been my only constant 'treatment' for IC through the years. I tried many meds but none worked. My question is, how will I be able to have sex? Should I see a doctor and discuss this issue? I know there are other ways to be intimate, I've been thinking about it non stop but will a man be satisfied with just that? I don't know if this is considered tmi here but what about anal sex? Is it a safe option for someone with IC? I was googling, trying to find info about it and I've read that it's not recommended to people with IC. Right now, without any treatment, I don't think I will be able to handle vaginal penetration. My bladder is always in pain and I also believe I suffer from Pelvic Floor Dysfunction. Any advice? I feel sad, lost and desperate because I really like this person and I don't want to lose him. I also really want to have sex with him, I'm very attracted to him and I don't know for how long I will be able to keep sex out of the equation. Any advice from someone experienced? I have no idea what to do. He knows I have IC, I've been slowly trying to explain him but we haven't reached the sex part yet. Part of me thinks I should just stop seeing him to avoid suffering. It's my dream to find love, get married and be happy but it seems like that isn't in the cards for me. Help, please!

  • #2
    Re: First time being intimate with IC. Scared and clueless. Any advice?

    Can anyone please help me out with this? I have no one to talk about these issues because I don't know anyone with IC in real life.


    • #3
      Re: First time being intimate with IC. Scared and clueless. Any advice?

      Hi Sabrina, well I certainly will try to help. I"m a man so my perspective might seem weird. I"m certainly not trying to be offensive. As a man I know I love receiving oral. You could just try doing that with him and he may very well be satisfied. I wouldn't recommend anal. I know some guys like to have sex with girls that way, but I'm not a fan of that. Some are. You might want to wait to tell him about your IC problems for a while to avoid scaring him off. That is just my opinion.


      • #4
        Re: First time being intimate with IC. Scared and clueless. Any advice?

        There's a post at that I suggest you read. Having an intimate relationship with IC is challenging, but with open communication and willingness to experiment, it's possible.

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