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Bummed Out

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  • Bummed Out

    Hello everyone
    Last night my boyfriend told me that he didn't want to live without sex the rest of his life, that it was still an important part of his life. I understood and thanked him for his honesty, but it hurt to hear those words come from him.
    I said that maybe there are alternatives to vaginal sex right now and he acted as if he didn't think there was anything else we could do and I am afraid he will get tired of this and dump me.
    I explained that I didn't ask for IC and I also want to have a normal sex life with him. That I am doing everything I can to get this under control.
    He held me while I cried for about an hour and ultimately he said that he didn't mean to hurt me and that he wasn't going to
    evaporate out of my life. He also said that this could have just as easily happend to him. But now, I wonder...I am still a little scared. I don't want to lose a beautiful relationship because of
    a crummy disease!!!
    Thanks for letting me vent.

  • #2
    I am so sorry your boyfriend is acting this way right now. Remeber that IC is hard on the both of you. I want you to know and possibily telling him wouldn't hurt ...that you can get can happen for you once again....finding a treatment that helps is very possible.

    In the mean time it sounds to me like you are doing the right things...It upsets that your man isn't going along with it.

    The beginnig of the this problem is always the worse...and can mean arguments and such......know that we are here for you...and will do what we can to help you through.

    this link gives a spouses perspective of IC and may help you or your man.

    I hope things improve for you and I will definatly send a prayer to God for you.

    Best Wishes,
    Faith, Hope, and Love,

    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook
    Be the Miracle! & Pay it Forward!

    [email protected] please contact me...I am here to help!


    • #3
      Hon i'm so sorry this happen i agree with Katrina he is trying to deal with it to he just doesnt understand completely hopefully he will have a chance to think things more threw and both of you can be together.
      remember true love will always see threw.
      sending you hugs and prayers
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.

      I have IC, but IC doesn't have me anymore!


      • #4

        I'm sorry to hear you are going through this... Katrina is right, in the beginning it is the hardest.

        I hope you find a way to be sexual together that works for both of you. It will take some trial and error. I find it helps to look at it like you are "experimenting with other things together," rather than the slightly more negative version, that you cannot always have traditional intercourse.

        Men usually LOVE to hear the word "experimenting" when it comes to sex

        I know my husband does... we are having fun with it right now. We bought several different types of lube and tested all of them out on our hands and bodies in The Great Lube Test Day ... our favorite is still Liquid Silk, which PikkuMyy on this site recommended. We give massages to each other. We've tried vibrators, which sometimes I can tolerate on the outside (no penetration) if there is some cloth between it and my vulva... and sometimes I cannot even take anything touching me at all.

        We do have traditional intercourse too, when I'm feeling well, but we experimented with that too... we find certain positions are better than others, that it helps to use LOTS of lube, and that it helps to take a Pyridium before we have sex to reduce the burn
        afterwards. Heat and/or ice afterwards is an enormous help as well.

        Also, I find it helps to be sexy and flirty with my husband anyway. I know that a lot of women think this will make him want sex more, so they avoid all contact... but I found that left both of us feeling deprived, and made HIM feel like I didn't want him anymore. SO not true. So now I still come on to him in the kitchen by rubbing up against him when he's cooking me dinner, or I still pat his bottom when nobody's watching in the grocery store... and for me, if it does lead to him becoming aroused, I find some oral or manual action satisfies him pretty well even if I am not in the mood for full intercourse.

        'Course, the deal is that if I REALLY do not want any sexual contact, he doesn't push the issue. Contrary to popular belief, men CAN wait a few days

        Anyway, my hubby and I maintain a sex life of some sort despite IC, so it is possible once your continual flaring calms down....

        If you want to talk, feel free to PM me at any time....

        Good luck



        *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.


        • #5
          Thanks for being candid. I ordered some of that Silk stuff. 2 weeks ago we used ky liquid and that burned. During sex I have some discomfort but usually get through it okay and feel pretty good afterwards. About 12-16 hours later is when my major burning starts. I don't understand the delayed reaction. It takes me out of commission for several hours. Sometimes masturbation will calm it back down again, which really seems weird to me. I am experimenting with my own body quite a bit.
          John is very loving and patient, but last night he just hit every fear button I have. I have been single for over ten years since my divorce and waited so long for a good man like John to come along. I don't like the idea of losing our relationship.
          I just feel like crying, if you know what I mean....
          Thanks for being here for me!!


          • #6
            I have always recommended a product called Slippery Stuff. Most other sexual lubricants contain glycerin, which is sugar. Most of us do not need sugar "down there," if you get my drift.

            It is nice that you two can talk about sex openly and that you are willing to offer him alternative sexual outlets. When I used to have flares, my husband and I would have oral or anal sex. Neither hurt my bladder. I know he resented us not having sex and I thought it was selfish that he wouldn't wait until my flair was over but we also talked openly about thesse things and he said he could go without intercourse but needed some intimate sexual contact and that masturbation woudl not fit that bill. At first I was hurt but then I saw it as a viable compromise. I haven't had a flair in so long (knock wood) but we still get to engage in these sexual alternatives.

            Good luck and (again) you are lucky to be able to have such open communication! Many couples do not communicate. Sometimes we do not want to hear what he has to say and other times he won't hear what we have to say. Sometimes he doesn;t even want to speak and thinks we read minds. It sounds like you lucked out.