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  • Will it always be like this?

    I am soooo frustrated. I feel like I will never be able to enjoy sex without pain during and a flare afterwards.

    As many may already know, I got my offical dx last Wednesday when I got my biopsy results. My uro gave me Elavil and Urelle to try and told me to keep on taking my Elmiron though I haven't really noticed a difference with it. I must say the Elavil really is helping. I was the person who sat with the heating bad either on my lap or on my back about 90% of the time at work and I didn't turn the heating pad on at all this week! I was very happy about that.

    Wednesday night hubby and I had sex for the first time since I started the Elavil. I was really hoping that it would be better because of the Elavil. NOPE!! It irrated the heck out of my bladder like normal. I had to get up to pee once in the middle of sex (by the way, I hate this it makes me feel like such a freak!) and the sex seems to have put me into a flare. I think the flare might be a little bit less intense than they were before I started the Elavil which is good but I am so depressed that sex still caused such a problem. Will there every be a time when it doesn't bother me????

    Yes before anybody asks, we always use lube now, I have been taking my Urelle almost around the clock so I had that in my system and I peed before we started. Ugh!
    Thanks for letting me vent.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  • #2
    HI! Sorry to hear about the bad experience you had last night......sad to say.....I still flare after sex.....and yep it's usually painful...even with lube. It sure would be nice to be able to have sex again......normally... with NO pain. It sure sucks to have IC! You can vent to me anytime you need to......I'm home on sick leave still.......so I'm online a lot! lol Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment


    • #3
      Thanks so much Roxie! It helps to know that I'm not alone that's for sure. I feel soooo bad for my hubby, he has the sex drive of an 18 year old and here is his YOUNGER wife who doesn't want to have sex because it hurts doing and I flare for a couple of days afterwards. He keeps on telling me that he's going to stop having sex with me altogether because he doesn't want to hurt me but I don't want to do that because then he'll be miserable too, gotta love IC.
      On an up note I got my welcome pkt today because I got an ICN Angel subscription! It's so cool, it has the IC awareness bracelet, the IC bathroom access card and I also got the special report on pain and some other goodies. That did make me feel a little bit better to have that package there when I got home.
      I guess I have to get ready for bed soon, my brother is coming tomorrow from Baltimore so I have to get up early tomorrow to do some grocery shopping and cleaning yuck
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment


      • #4
        HI! I know what you mean about not feeling so alone in all this pain from IC. I love this site and all the great people on it. I too joined the site and got the great packet with all the goodies.
        I agree......going with out sex isn't the answer.......it only adds to the problem. I hope one day we'll all be cured of this dreadful sickness!....ahhhhh I can dream I guess! LOL Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          (((((((((((((((((Christine))))))))))))))))))
          have you joined us over at www.whensexhurts.com yet.
          I think it would help to read some of our posts.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Cindy,
            I actually did join, I just forget about it, I'm ShanesWifey over there, I guess I'll have to get my lazy butt over there and read some of the posts
            Christine



            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
            I have tried every oral medication as well as rescue instills and DMSO.

            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
            Also proud mom to the best Bullmastiff on earth, Claus

            Comment


            • #7
              lol ok.. me too sshhh I won't tell if you won't. Hope they get the wet noodle after us
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                Chris...I will be looking for you on the other site. I feel a bit freer there to give support on this most intimant of subjects.

                Tig...Watch out. The wet noodle is hunting you. Can you hear it? *slip...slip* It will find you.
                Sharon

                Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                Where I can be found most days.



                Link to the ICN Patient Handbook:
                http://www.ic-network.com/handbook/

                Link to the IC Diet:
                http://www.ic-network.com/diet/


                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.

                Comment


                • #9
                  (((((((christine))))))))) I don't know if it makes you feel any better...but talking with the girls....even NON IC gals have um, er flare-like symptoms (like us!) after sex too! I've heard that many feel *beat up down there* and *holy crap!, feels like a UTI and wicked thrashed!* No, you're not a freak for having to pee halfway thru. I'm sorry the Elavil didn't help...but I am sure it won't always be like this...hang in there!!!
                  Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

                  Comment


                  • #10
                    Hi there,
                    Can't say much about IC & sex because I'm not had a relationship with IC, but I can say that a week on Elavil is too early to judge all its benefits.

                    While it was one of the first things that worked for me, it took awhile to see its full effectiveness at 10mg. Then I went up to 20mg & that helped more.

                    You may not yet be at full effectiveness or your eventual dosage. So, maybe feeling better is still right around the corner! Hang in there---
                    Kadi

                    -------------------------------------------------------------
                    I am not a medical authority nor do I offer medical advice. In all cases, 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.
                    ------------------------------------------------------


                    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                    Source - Pinterest
                    "


                    Current treatments:
                    -IC diet
                    -Elavil 50mg at night
                    -Continuous use birth control pills (4-5 periods/year)
                    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                    -Pyridium if needed,
                    -Pain medicine at bedtime daily, as needed during the day several times per week
                    -Antibiotic when doing an instillation to prevent UTI
                    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                    -Dye Free Benadryl 50 mg at bedtime
                    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                    -Managing stress= VERY important!
                    -Fur therapy: Hugging the cat!

                    Comment


                    • #11
                      Thanks Kadi! I know that it is possible that I will still feel much better on it. Actually I feel much better most of the time now I was just so disappointed I guess that I felt so much better most of the day yet sex was still really irrating to my bladder and I had to get up in the middle of sex to pee and that it put me into such a big flare. It made me feel pretty much like I did before I started the Elavil. I just feel so bad for my hubby, he loves me soooo much and says that he is very attracted to me, which I must admit with my billions of stretch marks from my wopping 9lb 7oz baby sometimes I find hard to believe. He just wants to be able to have sex w/ his wife w/o hurting her, what husband wouldn't want that. Hopefully I'll still get a lot better, crap, I just realized that I haven't taken my Elavil yet tonight, good thing I hopped back on here, lol
                      Christine



                      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                      I have tried every oral medication as well as rescue instills and DMSO.

                      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                      Also proud mom to the best Bullmastiff on earth, Claus

                      Comment


                      • #12
                        k here are a fewq things that get me threw it.

                        pyridium and tons of water
                        1/2 pain pill before and a hot bath.
                        using the bathroom literally on my way to the bedroom,
                        Hubby must take a shower with my dove senitive skin soap
                        tons of goofing around and fore play
                        immediatley go to the bathroom and pee afterwards
                        I then douche with sterile water only to rinse everything away.
                        then I finish with the other 1/2 of pain pill.
                        this usually gets me threw with a minimal flare unless I have eatten somthing that does me in. Like the champange and strawberries dipped in choc on our cruise. had a good flare from that little touch of romance I tried to add to the weekend

                        Comment


                        • #13
                          How do I become an Angel?

                          Comment


                          • #14
                            Myca, you don't need to become an angel. I think that most of the people on this board are, and I feel so blessed that we have this board.

                            Marsi4

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