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need help?????????????

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  • need help?????????????

    hello I am 23 years old and i was diagnoised with ic in 2009 when i was 19 years old and i am haveing trouble coping with it. I started dating a wonderful man during the time i got diagnoised with it and no four years later he is started to get fed up with me becasue i cant have sex very often and whe n i do i hurt during and after it what is the fun in that and when i am in pain i dont want anyone to touch me because i feel like they will hurt me more and when i am not in pain i am afriad if anyone touched me it would trigger that does anyone else feel this way or is just me. i am afraid to tell him because he is starting to think of me as not chelsie but the girl with ic and i dont want that. I love him so much but i dont know how to show him and make him feel good when i feel like crap all the time. i want to jump out of my skin most of the time because of the pain level. i just dont know what to do. he deserves a girl who can be romantic and affectionist and stuff like that. but i dont know how to break through it please help i am so despreicate.

  • #2
    You just need to be honest with him. Yes, it is very very hard on both you and him but if he really loves you he will understand - he doesn't have to like it but he will understand. Intimacy has been an ongoing issue that comes and goes depending on my multiple pelvic and vaginal pain syndromes. What are you doing to help with the pain and what type of pain are you having specifically? For me, the spasms (mostly vaginal) and the touchy trigger points are the hardest things. I hate to be touched because all I know is pain in some areas so I have a lot of no touching zone and my husband understands that. For me, a HOT bath can help relax the muscles before sex. If you have not tried PT, I would give it a try. Afterwards I ice the perineum and/or heating pad for the bladder the bladder pain doesn't usually kick in until the next day. What I have tried more recently that has helped tremendously is vaginal valium - I talked to my Dr and he gave me 5 mg to 10 mg and it has kicked down the pain afterwards TREMEMDOUSLY!! In fact, it can even be good :)

    I can totally relate to the not wanting him to think of you as the IC but as yourself. I hold back from my hubby a lot too because I want so badly to be "normal" but the truth is I am not and holding back can be unhealthy too.

    Hang in there. You are not alone and there are a lot of things to try!
    Diagnosed with IC 2008 via in office cystoscopy and symptoms

    Current treatments:
    -At home rescue instillations as needed
    - IC diet
    - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

    Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

    Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

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    • #3
      all my doctors are doing for me is having me take elmiron and flexril, and Pyridium and hypophen that is all they are doing my doctors dont know much. and i keep trying to find better ones but have been failing so far. i have those trigger points too and when i was younger i was raped by my father so that is why some of my symptoms are worst then normal. i have tried the bladder installation and distentions but he tells me it is to much to talk about my problems with him because it is to much to handle so i have no one to talk to and my doctors dont seem to want to help either. they just look at me like i have five heads and my family feels like i am faking it all.

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      • #4
        I would suggest counseling - not because I think you are crazy or making it up but because if your partner is not supportive and your family doesn't believe you, you need someone to listen to you. You can't keep it all in. I am not trying to be mean but I don't really get someone who supposedly loves you but doesn't want to listen to your problems - that is part of loving someone. Accepting them and wanting to help them work through their problems not forcing them to ignoring them. It also sounds like you need to find better doctors. search the list here. Drive if you have to. a 4 yr drive for me has been worth it and building a relationship with a dr is important. For the stuff that my dr here can help with he does. I have built a relationship with him and I know he trusts me and believes me and wants to help me. It can be hard to find that but it is possible. Why not bring in some info to the dr you feel most comfortable with about vaginal valium. It can really help with trigger points and sex. Again, I would suggest PT. I have also had to force myself to do things that I was afraid it would cause pain once I was under better control. I found that not everything hurt that I assumed would and not everything hurt as bad as I thought it would. It is really really hard to let someone touch you when you are hurting, I get that. I feel that. You have to try some of the things I suggested above and just keep working! It CAN get better. ((hugs)) I know this is difficult. Hang in there!
        Diagnosed with IC 2008 via in office cystoscopy and symptoms

        Current treatments:
        -At home rescue instillations as needed
        - IC diet
        - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

        Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

        Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

        Comment


        • #5
          Also, Flexril has never done anything for me.
          Diagnosed with IC 2008 via in office cystoscopy and symptoms

          Current treatments:
          -At home rescue instillations as needed
          - IC diet
          - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

          Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

          Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

          Comment


          • #6
            thank you dont worry your are not being mean and i know i am trying to find better doctors and flexril works for me it helps with the spasms. and my patner read my forums on here and he now understands what i am trying to talk about because it is not just me and i am not alone that there are other ic patients like me out there and he let me vent to him today and he has been trying to make me more comfrontable with myself and that is more then i could ever ask for.

            Comment


            • #7
              I am glad that Flexril helps you but even more glad your partner understands a little better. I hope you find greater relief soon!
              Diagnosed with IC 2008 via in office cystoscopy and symptoms

              Current treatments:
              -At home rescue instillations as needed
              - IC diet
              - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

              Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

              Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

              Comment


              • #8
                thank you i hope so soon too

                Comment


                • #9
                  I am sorry you are having trouble. Sex is one of the things that can be tricky at times with IC. Here is a link to a great thread that might give you some ideas to help.

                  The other thing to know from someone who has had IC for 38 years now, since high school, is that if he can't understand and be supportive it is better to find out before you are married to someone.There are men out there that will be supportive and love you no matter what is going on with you. Sending you a big hug!

                  http://www.ic-network.com/forum/showthread.php?22522-Jen-s-Tips-for-Great-IC-Sex&highlight=Jens+tips+for+sex
                  Jolene

                  "Life is what happens when you are making other plans" John Lennon

                  IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                  Information for Patients can be found here.
                  http://www.ic-network.com/patientlinks.html


                  Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                  Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                  "IC Angel 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."

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