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  • #31
    That's What Started Mine

    For some reason the Uro's I've seen and my general GP, refuse to see a connection between my urgency/frequency symptoms and masturbation, even though all my problems started immidiately after masturbating, which was around April 6th of this year. Although I don't have pain, the first two months or so, I would get urgency to void so bad that I would curl up in a fetal position and lay on the floor. Even after voiding, I would feel exactly the same way. It was the most horrible thing I have ever lived through.

    At this point I am a lot better. Although I still get frequency and urgency, it's containable and I'm able to deal with it, although it is still annoying and affects the quality of my life. I've reached a ceiling in my recovery and I haven't been able to break through to where I was before April, which is very disheartening.

    I haven't had sex with my wife or masturbated since April. Frankly, I'm too scared that I will go back to where I was in April and May. I've always wondered that if my history of chronic masturbation going back to when I was seven, and I mean sometimes two or more times a day, damaged my nerves and led to my having this problem. The last time I tried to masturbate, which was about a week after I did the first time, which started this nightmare, my orgasm wasn't even normal. It wasn't pleasureable. It was very unfullfilling. It was as if I had an internal short curcuit. The sad thing is that I can't get anybody to believe that masturbation has anything to do with my problem. Yet, all the regular tests show that I'm completely normal. My only issue continues to be frequency and urgency.

    I wish I could reach inside myself, press a few buttons and pull a couple of levers so I can be normal again.

    Comment


    • #32
      Sorry you have/had so much pain/discomfort with this. You're not alone.

      I have a feeling that the GP's and Uro's are going to start making the connections. Most of the times, when they make connections, it's because of us "patients." It's hard to believe in coincidence at this point. That's why it's important to share our experiences. If no one tells them, they can't make the connections.

      Comment


      • #33
        *Tears*

        OMG, I am in tears. I have never had a flare this bad, in my life. My partner and I had sex at 10:30, we stopped, I peed at 11:30 and then we did a little bit more before we went to sleep at 12:30. I woke up at 2:30, having to go to the bathroom *SO* bad. Then, I woke up again at 4:45, and I had cramps, back pain, etc *SO* bad. I haven't been able to sleep since. I am so frustrated, tired and in *WICKED* pain. I've never experienced this pain ever. I'm overwhelmed.

        Please if anyone can give me some symptom relief, please write me. I am not on any IC meds yet.

        Comment


        • #34
          IrritatedbyIC - have you tried some baking soda/bicarb soda (sorry don't know what it's called outside Australia)? It's the only thing that helps my flares caused by sex. I usually have half a teaspoon in a full glass of water. It tastes terrible but it works for me. That and some anti-inflammatory painkillers (strong ibuprofen) usually do the trick....

          I hope you're feeling better soon
          Kiki

          "...I have spread my dreams under your feet;
          Tread softly because you tread on my dreams."

          W.B. Yeats, 1865 - 1939

          Diagnosed with IC 11/02
          Diagnosed with Type 1 diabetes 2/06


          Comment


          • #35
            Hi Kirsten,

            I haven't tried that yet. Thanks for the suggestion! I also use healing foods - i.e. - Parsley tea (which is proven to prevent UTI's), pineapple/pineapple juice (which is proven to reduce inflammation). And of course, water.

            Thanks for replying!

            Comment


            • #36
              Just as a side note, some IC patients find ibuprofen to be VERY irratating to their bladder. I can take it if I take prelief with it but one time I forgot to take the prelief and my bladder freaked out on me, so be careful.
              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


              • #37
                I abhore medication

                Originally posted by IrritatedByIC View Post
                OMG, I am in tears. I have never had a flare this bad, in my life. My partner and I had sex at 10:30, we stopped, I peed at 11:30 and then we did a little bit more before we went to sleep at 12:30. I woke up at 2:30, having to go to the bathroom *SO* bad. Then, I woke up again at 4:45, and I had cramps, back pain, etc *SO* bad. I haven't been able to sleep since. I am so frustrated, tired and in *WICKED* pain. I've never experienced this pain ever. I'm overwhelmed.

                Please if anyone can give me some symptom relief, please write me. I am not on any IC meds yet.
                But when I used to flare bad I always had a Vicodin handy. If anything it will give you some temporary relief. I can relate to your agony. I'm a man, but have experienced it in my own way. It's enough to make you jump through a window. I hope things have settled down a bit. What has worked wonders for me is taking the Desert Harvest aloe verde pills. I take them religiously every day and I haven't had a bad flare in over a month. However, I still have to be careful about eating certain things like O.J. and nuts. Things will get better. You are in our prayers.

                Comment


                • #38
                  I agree that ibuprofen can be irritating, so do be careful if you try it. For me, and I've been officially diagnosed with IC, it's one of the only things that works, and I've tried a lot of things....

                  Also be careful of pineapple or pineapple juice - the acid in it can be irritating if you have IC. Pineapple is my favourite fruit and I haven't been able to eat it or drink p/apple juice in nearly 5 years One taste is a guaranteed flare....

                  IrritatedbyIC, have you tried the elimination diet yet? I found that eliminating most citrus and other acidic foods made a huge difference.
                  Kiki

                  "...I have spread my dreams under your feet;
                  Tread softly because you tread on my dreams."

                  W.B. Yeats, 1865 - 1939

                  Diagnosed with IC 11/02
                  Diagnosed with Type 1 diabetes 2/06


                  Comment


                  • #39
                    Originally posted by GriffsMommy View Post
                    Just as a side note, some IC patients find ibuprofen to be VERY irratating to their bladder. I can take it if I take prelief with it but one time I forgot to take the prelief and my bladder freaked out on me, so be careful.
                    Yeah, I can't take it anyway because of having asthma. What's prelief? I keep hearing about it.

                    Comment


                    • #40
                      Originally posted by strobers View Post
                      But when I used to flare bad I always had a Vicodin handy. If anything it will give you some temporary relief. I can relate to your agony. I'm a man, but have experienced it in my own way. It's enough to make you jump through a window. I hope things have settled down a bit. What has worked wonders for me is taking the Desert Harvest aloe verde pills. I take them religiously every day and I haven't had a bad flare in over a month. However, I still have to be careful about eating certain things like O.J. and nuts. Things will get better. You are in our prayers.
                      I wish I could take Vicodin but I'm allergic to that. I do have an alternative - Bach's Rescue Remedy - Flower Essence. Yeah, it really does want to make you jump through a window! They have settled down, thanks. I haven't heard of those aloe verde pills. I'll look into that. Thanks. Yeah. Thanks for the prayers.

                      Comment


                      • #41
                        Originally posted by deviation72 View Post
                        I agree that ibuprofen can be irritating, so do be careful if you try it. For me, and I've been officially diagnosed with IC, it's one of the only things that works, and I've tried a lot of things....

                        Also be careful of pineapple or pineapple juice - the acid in it can be irritating if you have IC. Pineapple is my favourite fruit and I haven't been able to eat it or drink p/apple juice in nearly 5 years One taste is a guaranteed flare....

                        IrritatedbyIC, have you tried the elimination diet yet? I found that eliminating most citrus and other acidic foods made a huge difference.
                        Yeah, I can't take it anyway because of having asthma. Oh I didn't think about the acidic pineapple juice! *smacks forehead* I'll look up another food that's anti-inflammatory.

                        No, I haven't tried the elimination diet yet. I'll have to look it up. Yeah, I'm sure. I did hear though that Cranberry juice is bad for IC'ers. So I've stopped drinking that. I'm going to look at the diet today.

                        Thanks, again.

                        Comment


                        • #42
                          Hey, maybe taking an muscle relaxer after (or right before) any type of sex, including masturbation can help + a pain med right after or before. It is much easier to PREVENT pain if you know sex is a trigger , than after it already started.
                          Other alternatives are piridyum, prosed, etc, but those you have to take a few hrs before to give it time to get to the bladder.

                          I find it better for me to have sex during the day so that I can flush antyhing to avoid an infection by peeing a lot, drink lost of water, laying in the couch and watch a movie or take a pain med and muscle relaxer + prosed (a whole project)
                          Hugs,
                          SMR
                          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"

                          Comment


                          • #43
                            Originally posted by SMR218 View Post
                            Hey, maybe taking an muscle relaxer after (or right before) any type of sex, including masturbation can help + a pain med right after or before. It is much easier to PREVENT pain if you know sex is a trigger , than after it already started.
                            Other alternatives are piridyum, prosed, etc, but those you have to take a few hrs before to give it time to get to the bladder.

                            I find it better for me to have sex during the day so that I can flush antyhing to avoid an infection by peeing a lot, drink lost of water, laying in the couch and watch a movie or take a pain med and muscle relaxer + prosed (a whole project)
                            Hugs,
                            SMR
                            Thanks, those are great ideas!!

                            Yeah, my partner works during the day, but maybe early evening or I can do it during the day by myself, LOL!

                            Hugs!

                            Comment


                            • #44
                              I'm surprised to read that Doc's don't put this together. An orgasm is essentially a spasm of internal organs. Why wouldn't they think that it 'wouldn't' cause pain and flares afterward? It seems that we know more about this disease than they do at times. What really sux is that I haven't even had sex in approx 6 months because I'm afraid to. Somethings gotta give on this deal. My husband is as understanding as it gets but come on, sex is pretty important in our life and we shouldn't have to give it up or pay for a week afterwards. I've tried different positions and came to the conclusion that it's the actual orgasm that is causing the spasms which is really what a flare is.

                              Comment


                              • #45
                                I am in the same boat with you girls. Sex is becoming miserable for me lately. I agree with you about he doctors not knowiing enough about this disaese. My husband and I are a difficult time finding a position that doesn't casue me to flare.
                                Rebekah - Diagnosed with IC and Hunner's Ulcers in March 2009

                                Two Hunner's Ulcers were removed by laser surgery surgery Jan 15 , 2010

                                Proud Mother of Jeremy Jr. Born on Wed May 4, 2011

                                "For every door that is closed a new one is opened"

                                The Lord's Prayer

                                Our Father, who art in heaven,
                                Hallowed be thy Name.
                                Thy kingdom come.
                                Thy will be done,
                                On earth as it is in heaven.
                                Give us this day our daily bread.
                                And forgive us our trespasses,
                                As we forgive those who trespass against us.
                                And lead us not into temptation,
                                But deliver us from evil.
                                [For thine is the kingdom,
                                and the power, and the glory,
                                for ever and ever.]
                                Amen.

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