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  • cmclien
    replied
    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.

    Leave a comment:


  • Lindeee
    replied
    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.

    Leave a comment:


  • hollyroseanna
    replied
    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!

    Leave a comment:


  • MidnightMoon
    replied
    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.

    Leave a comment:


  • Briza
    replied
    and this one:
    http://en.wikipedia.org/wiki/Persist...ousal_disorder

    Leave a comment:


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

    Leave a comment:


  • cmclien
    replied
    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?

    Leave a comment:


  • ICNDonna
    replied
    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

    Leave a comment:


  • sailawaygrl
    replied
    I sent you a personal message (pm).

    Leave a comment:


  • MidnightMoon
    started a topic very embarassing

    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.
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