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Pendulum swing on urinary woes

Discussion in 'Support Subforum' started by she333, Nov 6, 2017.

  1. she333

    she333 Peer Supporter

    Thanks for reading. I have been dealing with tms symltoms of IC and PFD since the end of 2014. Improved by late the following year. PFD so much better. Thank you hypnotherapy. And of course Sarno. I am an anxious person with some confidence issues so this shoe fits.

    Anyway, for the past 2 months I've had some worse days. I mean I have never been totally symptom free but most of the time do well and practice outcome independence hardcore. Yesterday morning was insane. I can't believe how much my bladder hurt. I drank more water and that made things worse. It feels like having my bladder empty helps so much. I am better today for sure, but that shadow of nerve pain is still hovering and I can't help but worry some something will invite it back. I haven't been so bad since 2015. Nothing has really changed in the past 2 months. In the first half of 2017 I had a baby and we moved to a bigger home in a nicer area. This is my 4th so being a mom is not a new stressor.

    I just want to forget the bladder exists. I don't want to think physical, but of course now I feel I should be cautious about bladder irritants and my hydration level. I keep praying it's some extinction burst. And it is not a UTI. How can this variation be so volatile? How can I go from am 8 to a 1 and back and forth? Is improvement from an empty or near empty bladder really associative learning? Want to never return to my former dark misery. But today I'm ok. I notice I'm thinking about it more so I'm trying to distract myself while not over or underhydrating.
  2. Time2be

    Time2be Well known member

    I wish I could tell you why your bladder acts up like this. Mine is doing the same since almost a month. In my case I think it is overwork, I am not good to myself and the overwork I agreed to seems to be endless. So, my goodie part has hurt me again. Maybe you have some issues that also are uncomfortable to think of. A baby of 4 month can be a stressor. I don’t have children, but I know from others that the egoistic part of us might not be so pleased being in charge of a baby nonstop. I am just guessing ....
    about IC: if you had the necessary diagnostics and no structural damage could be found, then it is psychosomatic. Real IC exists, but it is visible on cystoscopy. To diagnose IC just because of symptoms and because no other physical reason could be found, is a mistake unfortunately lots of urologists still make. So, you have experienced that the TMS therapy helps, then it also will help again. And don’t catastrophize about the dark days etc. This makes you fear and then the pain circle is going on.
    I am saying this to you but I also have to tell me the same things! I know how difficult it is.
    Gigalos likes this.
  3. she333

    she333 Peer Supporter

    Thanks for the reply. I did not have a cystoscopy and don't think I will. Sorry about the overwork. Hard to ssy no, right? Sometimes since I've been dealing with this awhile I get tempted to try physical stuff like a med. But I haven't seen a physician in a while and I'd rather stick with mindbody. I know it's hard not to think big picture all the time for me. Sometimes focusing on now stops the catrastrophizing some. I suspect some of this comes from muscles. And as I get some to relax others get recruited in the same area. Damn tms
  4. Time2be

    Time2be Well known member

    Well, TMS Can also be helpful. It tells us something is wrong. It’s human to try medicine. For me nothing has worked in the sense of that the pain just goes away. I take amitryptiline, only 10mg, in the evening. I needed 50mg when I was really very down and my nervous system all winded up. But medications are only crutches, the healing takes place differently.
    Maybe people here disagree, but I would have all necessary diagnostics to rule everything else than TMS out. The fact that you conquered the pain once and that it is back now, indicates that it is very likely TMS. And if you are comfortable with your decision you should go for it. I felt very much relieved when I had my results.
    Your strategy to distract yourself is not so bad. At least you are not thinking about it all the time. And maybe you also find out what bothers you. Be kind to yourself and don’t blame you for being in pain!
    she333 likes this.
  5. c90danwaiel

    c90danwaiel Peer Supporter

    When I had pelvic pain, I had a major recovery for about 5 months or so with only minor recurrences. Then, I had a week long period where it got quite bad. I noticed you mentioned the fear of the pain returning, and that was the same worry I had when my relapse hit.

    What had been a small spike in main that I'd normally ignore, stuck around a bit longer than usual one day and my fear ramped up. And then my pain ramped up, and then my fear ramped up, and the feedback cycle began. I went from nearly pain free one day, to back where I'd been before the next day. Thankfully, I was able to beat the pain by regaining my outcome independence and remembering that relapses are part of the process for many people. For me, I feel a lot stronger on the other side of it, because it built confidence that I could beat the next one. I'm actually quite grateful the relapse did happen, strange as it sounds.

    It sounds like you have a lot of worries about the pain coming back and worries about what could be causing the pain. I'm wondering - and you know your situation best here - but it sounds like your state of mind is dependent on the outcome of whether your pain comes back or not. Outcome independence can be really difficult when you're in pain, but for me at least, that was key to moving past my relapse. I also had fear of the 'shadow of the nerve pain hanging over me' but thankfully was able to move past that Chinese finger trap of anxiety and pain. Hope things have gotten better and best of luck!
    Paigeee and Time2be like this.
  6. Time2be

    Time2be Well known member

    I hope that you are doing better and that some of the posts here help you, she333!
    To c90danwaiel: You describe the fear cycle very well, that’s also like I experienced it and sometimes still do. Though I am happy that I got rid of the fear to fear. That was a major step for me.
    The way you describe outcome independance is really talking to me. That one’s state of mind is not dependent upon the fact whether you are in pain or not. As you say this is difficult. I still don’t manage it all the time. But I am getting better at it. Pelvic pain and bladder pain are really nasty, especially the need to go to the toilet all the time. I have this problem since 20 years and what is somehow funny: I managed it fairly well for the first 15 years. I was absolutely convinced that it was psychosomatic and ignored the pain. I had long pain free periods. But of course outcome independence is not enough, you also need to find out the reason for the pain. Which I didn’t at that time.
    For me the main problem started 5 years ago when I started to spend much time at the interstitial cystitis network homepage. I really got hysteric about food, tried all sorts of natural remedies (very costly) and became very unsecure. Because neither remedies nor diet made any change to my pain levels, I started to ask questions in this support network. But that was not really appreciated on this homepage (to say it politely). First when I found an urologist who confirmed the psychosomatic nature of my pain, I regained some of my former certainty and of course stopped visiting these sides.
    My next step will be to start dating again (I am divorced) and I start really to be nervous by just the thought of it ... but first things first: I want to be more comfortable with myself.
    c90danwaiel likes this.

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