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How do you tell a man you have IC?

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  • #16
    oh cat, i totally understand. i feel traumatized by ruined relationships because i seemed too "needy" during sex...in other words, its hard for me to get aroused when i expect pain. so a guy cant try to jump in too soon if you know what i mean. i hope to one day find a man who isnt selfish and only things about himself. it IS possible for me to have sex...but it takes a lot of work. i hope to find a guy who is ok wiht that!!!
    diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
    frequent UTIs
    No frequency, just urgency and pain!


    tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

    Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

    TENS may help a little

    Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

    fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

    Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

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    • #17
      carolinejulia,
      glad you could talk openly about it

      Since my IC has got worse, have become more open about my health and able to tell people, but it is still a 'womens problem' as far as guys and most people are concerned so it depends on how comfortable you are with it.

      I am also hesitant about bringing up that I have IC - before I did what miss sunshine did, limit fluid intake and take a pyridium etc for small flareups then and later got better so it wasn't so obvious unless drinking fluids and I always joked about having a small bladder.
      But nowadays, have severe IC but want to start dating again - I think the IC thing is something that I can be open about - it is the other stuff about IC that I am scared about telling guys - esp the problems with sex... it would probably scare anyone off I think.

      It is tough dealing with an illness and pain and being off work for nearly a year - feel like a total shadow of my former workaholic, active, sociable self - since being ill colleagues all busy, friends moved on as I don't go out, drink etc now.

      Well right now, have met someone who seems really nice - is just scary a- telling him I'm not working now b - am dealing with an illness and c - him reading up about IC and sex and running miles....
      IC diagnosis: Aug 2005
      Symptoms: Urgency, urge and irritation and urethral symptoms
      Flareup for 1 year til July 2007 (had constant urge and pain et al....)

      Elmiron 100mg 3x daily April 2006 - present
      Enablex 7.5mg nightly Sep 2007 -present
      Atarax, Elavil 10mg nightly (Dec 2007)
      Acupuncture - November 2007 - present

      (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

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      • #18
        confidence

        I liked the way carolyn Julia presented "how to tell about IC". Good for you! you transmit confidence and that's a PLUS!
        I guess that if you present things wiht confidence in yourself you have chances to change the outcome to the best. I totally agree that if a man will run away becuase of IC, then it wasn't worth it to begin with. And these are the man who will fall apart or not be able to endure difficulties in life. IC is not the only thing that can go wrong in a relationship.
        I also agree that, if you are a little shy and prefer a man to get to know you first and then disclose your illness that's OK too.

        Don't let IC make you feel lessworthy as a person, you are stronger than probbably most of the average people out there. We deal with things that make us stroger even if we don't realize it yet...
        I wish you the best.
        Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
        UTIs since mid 2004
        Recurrent yeast infections since mid 2005
        IC dx 3/2006
        V V dx 12/2006
        Other conditions: IBS, allergies, dry eyes.


        Current IC medications:
        Elavil (since 12/06) 10 mg;
        Cysta Q (since 5/07)
        Rephresh acid jel every 3 days
        D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
        Probiotics Femdophilus or other brands
        Gy-Na-Tren for yeast infections (started using it as needed since 2010)
        Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


        Past Meds and why I stopped them:
        Elmiron: March to September 2006: headaches
        Lyrica:2 weeks in 2006: headaches
        Cystoprotek: from Jan to April 2007: nausea

        Femcon Fe (2/07 to 10/07):caused spotting/bleeding
        BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


        "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

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        • #19
          I am an optimist. I haven't always been...but God has opened my eyes to several truths...One is:

          I am not broken...at least not physically. I used to think that no man would love me when I had so many problems, physical scars, and wasn't 'normal.' Truth was, what was really broken was my heart, my self-esteem, my spirit. I cried out to God time and time again that I wanted to be 'normal.'

          Now I look back, and think, there was a lot of good that has come out of being 'different.' I think I am a kinder, more considerate person, with empathy, and a heart for those in pain. I understand the depth of emotional and physical pain. And even though I feared I would be alone for the rest of my life, and no one would love me the way I was/am.

          Let me tell you a little story:

          When I was in high school, I was extremely shy around boys. Couldn't talk to them, unless they were 'not my type' or 'taken' My friend, Kenzi, brought this guy to a Halloween party with her. He was dressed like a football player, and OH MY....SOOOOO CUTE!!!!!....She was a dear friend, and asked me to play hostess. We were nice to each other...but that was that. I was 16.

          A year later, he came to prom with another friend (he was from a different school) She ditched him, and through a crazy sequence of events, I was 'solo' myself. He and I ended up talking, dancing and flirting ALL NIGHT. In fact, we were so into each other, those two girl friends didn't talk to me for the next month of school. We never exchanged numbers and I felt like an idiot (in hindsight) for throwing myself at this guy.

          Several years later (and a rotten fiancee) I was going to school, and this girl told a personal story in class. I thought, I have to meet her. I want to be her friend. We went to lunch that day. While there, she gets this strange look on her face. She starts telling me about her brother, who is also in the counseling program, and that he wants to be a pastor...and how she has never felt anyone was good enough for her brother, but....she felt we would really hit it off. I was flustered, and intrigued...But I had been dating someone for about a year...Still, I had to ask one question. 'What is his name?' When she told me, you could have knocked me over with a feather. It was that boy...the cute boy that I had such a crush on in high school. I blushed. Stammered. and felt a fool...thinking that I had thrown myself at him. Still, something had happened in my heart.

          I went home that day, and broke up with the guy I was seeing. And although I had no hope that anything would happen, I knew 'butterflies'. Although I didn't know it at the time, my friend had gone to her home, and told her brother that she had 'met his future wife.' Little did we know that she was right.

          That was around Oct 1. Our first date was Oct 14. Our engagment was Jan 14, and marriage May 28. He was/is my miracle, and the man that loves me wholly, as I am. And I know that he is the ONE for me. Handpicked.

          Here is why:

          I had seen him over and over and been attracted the whole time. I only went out with my ex because he 'acted' like my husband actually is. I asked God for a tender-hearted, caring man, who loved his family deeply, and whose family would love me deeply...before we dated. ---His mother told me (1 week before we dated) that she thought I was the one for her son. And, we both had moved away, and ended up coming back to our hometown (even though neither of us had a desire to) And come to find out, my hubby said that even through the 8 years that we were apart, that he remembered me better than the girls he actually hung out with, and was constantly seeing girls that 'reminded him of me.' Plus, I was the most second-guessing person in the world...And I met him again, and knew...

          Ladies, I say all of this to say that some man is out there, who will appreciate who you are, because they will be the right person for you. It is easy to 'think' you know...but as I got to know my husband, and saw his character, how he treated others, his respect for God, and his kindness...No doubt about it.

          I say ALLL of this, because I remember how it hurt to want to share your life with a person that would love you...and believe he would never come. That was me for about 10 years. It is possible. There are extraordinary people out there...(and in here) that have that same desire, and won't let 'shallowness' get in their way. And, as I have learned, sometimes you have to be in a wrong relationship to recognize the right one.

          Don't give up!

          LKL
          Dx's:
          IC -February 2007
          PCOS - August 2005
          Asthma and Allergies - 2003
          Depression - 1997
          Scoliosis/Sciatica/arthritis - 1997
          Hip Replacement -2001
          Possible IBS -2006

          Current IC meds:
          Elmiron, 100mg 3x's a day

          Other Meds:
          Metformin 850 mg/2x a day
          Singulair 10 mg/1x a day
          Albuterol and Advair
          Femara (infertility)

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          • #20
            It depends

            I've had painful intercourse and frequent urination for just about my entire dating life, so I've had quite a bit of experience (it took a long time to find my fabulous partner!).

            I think for me it was different with each person. Partly it's about how I was feeling about my health problems at the time, or how I was feeling about the person. With some guys, I made some general comments about "health problems" early on in dating, possibly adding that I have to go to the bathroom frequently, and then brought up the sexual issues a little later, when we were closer to that being relevant. With my current partner, I did this and then talked about sex after we'd already done it once. Sex for the first time can be awkward, and I thought it would be more relaxing without him worrying about hurting me. At the time, intercourse was only a little painful, so it wasn't that big a deal. Then I talked about it at dinner on our next date. I matter of factly explained all of my health problems, and how they impact my sex life. I told him what I need from him: to be a bit gentle, have a sense of humor, be prepared to stop if I need too, and be willing to try different positions. It worked out really well.

            With other guys, and when intercourse has been more painful, I've talked about it before having sex, and it was reassuring to know that the guy was ok with everything. I find it helpful to explain how it will effect the guy, and what I expect/need from him. Including the fact that I may need to stop having intercourse sometimes, and that sometimes when that happens I'll feel like doing other sexual things, and that sometimes I'll just want to stop everything because the mood is broken for me. I've never dated a guy who had a problem with it, everyone has been willing to "work around it".

            Best of luck!

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