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  • very embarassing

    I dont know if this is in the correct part of the forum.

    This is very embarrassing. I goggled this and saw some others in an old archive file had it so I don’t feel so horrible but still it is embarrassing.
    I have not told my doctor about this because the embarrassment is just too much. I feel awful telling my doctor this, its just so embarrassing.

    I’ve had bladder pain on and off for over a decade. It’s gotten gradually worse, and now I am noticing more and more, this other symptom with it.

    When it gets bad now, i also feel like I need to orgasm, to get relief from the pain. It’s not a nice feeling, it is painful pressure and horrible. When the pain is bad i end up having to orgasm many times. I *have* to, to get relief. I cant wait, its so distracting and pressure feeling.

    It is not about orgasms in a good way. It’s connected to the bladder pain. It hurts so bad and is so uncomfortable. Orgasm causes some relief.

    This started happening on and off a few years ago and now its gotten worse and worse.

    I don’t want to tell my doctor for fear of being seen as a nut case. I’ve had unsympathetic doctors about the bladder pain and that is bad enough. I don't want to tell them about this! Also as a child I was sexually abused (Ive seen a shrink for many years about this and consider myself relatively emotionally healed) but my doctors know about this and I fear that I will be seen as having emotional problems about sex which are causing my symptoms and I will be seen as a freak or something.

    Does anyone get this pressure, pain need to orgasm thing also? Has anyone told their doctors? How did you tell them? How did they react?

    Is this a symptom that others get also? I never used to get it but as the pains gotten worse it has happened.

  • #2
    I sent you a personal message (pm).
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      What you're experiencing has happened to other IC patients so we all know what you're feeling can be a part of interstitial cystitis.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        I read this can sometimes be a symptom. I was going to post a link to the article but couldn't find it. It makes sense that if you have swelling around that area it could give you that uncomfortable sensation. I understand your discomfort at telling your doctor and honestly I don't know if you need to since you have the bladder pain. I would only tell him if you really trust him, just my opinion.
        You are not the first to post about this, there are others with the same symptom.
        Just a thought, maybe a numbing gel would help (benzocaine). You could ask your doctor about this. Are you on other medications for your IC?
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          please see this link:
          http://www.ic-network.com/forum/showthread.php?t=34448

          Comment


          • #6
            and this one:
            http://en.wikipedia.org/wiki/Persist...ousal_disorder

            Comment


            • #7
              Hi Everyone thank you very much for replying. It is so helpful to know I am not the only one with this.
              Thank you for replying and for the links too.
              I had bad pain today.
              Am starting the IC diet now.

              The cold makes it flare for me, I think coffee also. I love coffee but today was so bad I will stop drinking it if it helps.

              Comment


              • #8
                Yeah I get this everytime I have a flare up too, it's like its the only way you get relief, even just for a few minutes. It must just because it makes you feel tired, or releases natural painkillers or endorphins or something, or maybe it numbs your abdominal area for a while!

                Comment


                • #9
                  When I was first diagnosed in 1996 I had horrible urethral orgasms during my sleep....it was traumatic. I generally have a lot of urethral pain. I got on ativan at night and this helped. I don't have that symptom anymore....but do dream about having to pee a lot.

                  Comment


                  • #10
                    low acid coffee

                    Originally posted by MidnightMoon View Post
                    Hi Everyone thank you very much for replying. It is so helpful to know I am not the only one with this.
                    Thank you for replying and for the links too.
                    I had bad pain today.
                    Am starting the IC diet now.

                    The cold makes it flare for me, I think coffee also. I love coffee but today was so bad I will stop drinking it if it helps.
                    Have you tried the 50% less acid coffee? I drink that now and take a couple of prelief with it. There are a couple of different kinds and there is even a link to the puroast here in the food section of the website. You can also order direct from their website for additional flavors. You might be able to tolerate that. I only drink it in the morning and then switch to IC OK teas.
                    Cindi


                    Gelnique for frequency/urgency - works great
                    Macrobid after sex
                    Prilosec, continuous birth control pills
                    synthroid .088mg, mucinex-d, restasis

                    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                    Great treatment flowchart on page 19 of the pdf

                    Comment

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