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pain & increased sense of urgency when aroused :/

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  • pain & increased sense of urgency when aroused :/

    Hi all,

    I've been absent from the board for a little bit because I started getting to overwhelmed reading and doing research and talking about my IC everyday. I just came back to university, and I was doing well symptom wise for a record breaking 15 days in a row haha. This ended 2 days ago for no reason, which sucks, but such is IC. Anyways, my boyfriend and I of one year as of yesterday now live about 5 minutes away from each other, and we see each other every day. Last year, before I was experiencing the severe symptoms of IC that I am now, we would engage in intimacy almost every night. I would usually engage as I had somewhat of a high libido, but so did he, and it was wonderful (note I have not had sex before, so no penetration, just everything leading up to that). But since this IC it is terrible to become aroused.
    In the beginning when the pain was almost intolerable, intimacy was a welcome distraction and I engaged in it at least once a week. However as time went on and symptoms fluctuated, I have become less and less able to tolerate symptoms, and it is now to the point that I am scared whenever we start to kiss that he will want to initiate something, and I will have to say no.I'm not scared of him or anything, and he never pushes, I just feel bad about myself and sad for him.
    Even just normal arousal without contact can cause that stupid feeling of needing to pee. Of course before my IC this was normal and many people talked about the sensation that they would pee their pants during sex. But now that I have experienced this sensation for so long I can't handle doing anything that causes this sensation to increase at all. My boyfriend has been very good about it, and I still enjoy giving him pleasure, as it makes me feel good when I can make him feel good. But I'm worried that this isn't normal. I hear and see a lot on the forums about penetration causing a flare, but I haven't been able to find anything about just arousal and external contact causing a flare up in symptoms.
    I am also wondering if anyone has any advice on how to handle this? I miss the old me, the one who loved doing things. Now I rarely ever experience the desire to engage in any intimacy other than cuddles or a good kissing session. Since the beginning of august I have only attempted 2 times to engage with him, and I had to stop him as I could not finish due to the strong irritation and sensation of urgency. At 21 I feel like my whole life is changed forever. If I cannot even enjoy arousal how am I to carry a child. Honestly I'm on so many medications I would never be able to carry a child safely anyways. All these dreams I had of happy me with a husband and a little baby in my tummy are dying. I dreamed of travelling with my boyfriend, of having a family, of nursing, and now I would spend most of my time in my bed with a heating pad if I could, as it is the only thing that helps. I had to register with my university disability services, and got one of those accessible parking passes saved for people with disabilities, as it causes me excess pain and energy to walk more than 15 feet.
    Sigh, I just needed to vent about my weird symptoms and my frustrations. Thank you to anyone who reads this or responds, I really do appreciate being able to talk to others with my same issues so I feel less alone and scared.
    Diagnosed IC and PFD February 2016. Before this I had minor IC symptoms for 6 years.
    Other diagnosis: IBS, Chronic Sinusitis & Rhinitis, Iron deficiency