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My Bladder is ruling my life

Discussion in 'General Discussion Subforum' started by Anxiousone, Jun 4, 2016.

  1. NicoleB34

    NicoleB34 Well known member

    Still not sure if i have IBS because it also feels like "anxiety belly". For instance, i quit gabapentin short term, and even though it's not an opiate, the the withdrawals were intense. Generally, people get anxious, spastic, emotional, etc. When i was going thru the withdrawals, i felt all that, but most importantly, this gripping belly pain. I thought this was IBS, but realized it was just gaba withdrawals that faded with time. I do take a low amount of painkillers, only about 2 pills a day. however, sometimes i wonder if i'm experiencing withdrawals from those since i go all night with no meds (sleeping). When i wake up, i have this feeling that is similar to anxiety, restlessness, and stomach cramps. The fact that it fades by the time i am up moving about (and usually around the time i take my morning meds) makes me wonder if it's med related. I have some evidence of this because for brief times, i was on a longer-acting painkiller, and it seemed like my stomach pain was less in the morning. So, could it be opiate withdrawal? i dont know. I dont want to be put back on long-acting painkillers because in my body, they lead to more tolerance/dependence since the med is in your system around the clock. I am able to avoid tolerance and stay on a low amount of meds by sticking with short acting meds.

    The fact that you feel good for a short time when you wake up, and then the pain kicks in, exactly mirrors what most pudendal patients go thru. It was the same thing with my bladder. I used to be confused about this, and i assumed it was all physical/muscular, but another doctor explained that when you sleep, your central nervous system goes into a meditative relaxed state. After you wake up, your nervous system is ramping back up again, and the pain appears. Having a good gap in the morning is a good indicator of Central Sensitization / TMS.
    katecoco8 likes this.
  2. katecoco8

    katecoco8 Newcomer

    Thank you.
  3. katecoco8

    katecoco8 Newcomer

    Oh wow. This happens to me. I wake up and think, "wow my bladder feels almost normal" but then a few minutes later the same familiar pain is there waiting for me.
  4. NicoleB34

    NicoleB34 Well known member

    yes, my bladder would feel normal until the first pee usually, and i assumed that peeing was ticking off the bladder and waking it back up. Remission is possible, i'm in remission most of the time with IC (though i have a very low level of sensitivity, like a 1 or 2 on the pain scale at all times) but the severe flares are few and far in between.
    you'll see a lot of stuff about IC, claiming it's a disease of the bladder lining, or autoimmune, etc. The more they learn about it though, is that it's first and foremost a "nerve disease". Any inflammation and bleeding is generally secondary. For instance, even though it has autoimmune components, most antiinflammatories simply dont work for IC. I brought up the Lidaris pretzel study for IC. They insert a pretzel shaped implant into the bladder for two weeks in people with severe flares, and the device secreted small amounts of lidocaine only. By the end of the study, most people were better, and even more strange, bladder ulcers had cleared up. The device ONLY released lidocaine, an anesthetic, so how would that heal ulcers? Clearly there's something else going on. It seems that if the nerves dont hurt....they dont cascade into an inflammatory reaction. So it seems that the chemicals that nerve pain releases, must alert the body to send inflammatory cells to the area (mast cells), which further damage the bladder lining. However, if the nerves dont hurt, this process stops. So yes, in some people there seems to be an inflammatory cascade in IC, but it's probably because the nerves hurt and the body is confused, thinking there is a threat to fight.
  5. Time2be

    Time2be Well known member

    I think some clarification is needed: IC is a severe disease with structural damage, it exists and is not psychosomatic (Hunners ulcers e.g.). BUT: the urological establishment started to use the disease name of IC for all sorts of bladder pain and hypothesized that there might be a structural damage in the bladder lining that could not be seen. There is quarrel about possible pathological findings, but so far the only clear indicator that you have real IC is that your bladder wall can be seen to crack and there comes blood (not just small pin point bleeding). To include all patients with bladder pain in the category of IC/Bladder Pain Syndrome is smart for urologists, they have more patients and can try all the remedies they have for severe IC. There are several urologist who are very unsatisfied with the mainstream approach, check out Christopher Payne. I researched this field thoroughly, talked with different experts and this is the bottom line: IC exists but is very rare. Much more common is bladder and urethra pain because of muscle tension. Chronic pelvic pain it is sometimes called. And this has a strong psychosomatic dimension. In other words: it is TMS. There is a grey zone, as always. I think some bladder inflammation is caused by nerve pain release and the restricted blood circulation might also play a role.
    NicoleB34: yes, the nerve component is very strong. Though I think there is a real IC and these patients would profit from TMS therapy but might also need more. My urologist says that IC is a neurogenic disease of the bladder - but not psychosomatic. And she is very much oriented towards psychosomatics.

    Well, with this in background I always would recommend to patients with bladder pain to find a good urologist and have the necessary diagnostics. In Europe they do this and -funny enough - although they also subscribe to this very broad IC/Bladder Pain Syndrome classification they don't diagnose you with it unless they can see the classical cracks (and diminished volume etc. ).

    this means: though I have some of the symptoms of IC, I don't have IC. I have TMS bladder related. I think this is important to remember.
  6. NicoleB34

    NicoleB34 Well known member

    i agree IC is a catchall bladder pain term. My pelvic pain doctor also said that the hunner's type is probably a rare subset, and the rest of the patients were the nerve/muscle types. Still, there are odd cases where just pain relief alone has cleared up actual inflammation. The lidaris pretzel was one example, and there was another where they induced IC inflammation in rats, then used some sort of electrical stimulation to relieve pain, and the inflammation went away too. This was an odd finding, but makes me think that perhaps the neurotransmitters released during pain, might alert the immune system to release inflammatory compounds. Some other "pain" diseases like IBS or Fibro have been shown to have excess mast cells, though those are likely TMS as well. I wonder if some people's bodies can have an autoimmune type reaction in response to TMS/pain.
    what i do find sad about the IC tests, is that sometimes you can be in extreme bladder pain, but if you fail the hydrocysto test (no bladder cracks) they just say "you dont have IC" and dont treat you for the pain. Some people without the bleeding still benefit from IC treatments. I never had the test, but meds like gabapentin and tramadol were super helpful. I'm glad i wasnt ignored. The instills were a disaster though, and i'm not surprised they didnt work.

    There were other studies that showed that during a hydro/cysto, even healthy bladders can bleed because it's such a traumatic test. There's also eosinophilic cystitis which is very rare, and most certainly an autoimmune disease. Though, even autoimmune conditions like RA may have central sensitization/TMS component where the pain is stronger than the damage would suggest.
  7. Time2be

    Time2be Well known member

    Dear Nicole, I agree so much with what you wrote. Only one thing: when I said cracks then I didn't meant pin-point bleeding that appears under hydro (this is not acknowledged as an indicator for IC anymore). But a bladder that shows directly in an in office cystoscopy cracks and bleeding that seems still to be obvious IC. But you are right, there is a lot to learn about this. I am very happy to have an urologist who is knowledgeable in this field. I had several of these tests, no bleeding and other pathologies whatsoever.
    I understand that you profit from some drugs, but these are only crutches. Again, I understand that these are necessary crutches for a while! Because the pain makes you crazy! I am very happy to hear, that you doing well!!
  8. NicoleB34

    NicoleB34 Well known member

    I wish i didnt have to use painkillers. However, i go into panic mode, crying, and cannot work my job without them. Luckily, i can get by with a very low amount. I used to get so confused about my bladder, if i had true "nerve damage" like i thought, why would the pain come and go? I've also talked to a couple doctors who explained to me that when you have pelvic pain for a long time, especially if you've had a history of many/chronic infections (like i did) it excites the nervous system and nerves in the pelvis, and creates an abnormal sensitivity in the lower spinal cord. This area is the "hub" where all the pelvic nerves meet up. As a result, the entire pelvis sensitizes. This is why you're much more likely to get IBS, pudendal neuralgia, vulvodnia, etc. if you already have bladder pain. I seem to be falling down this domino effect since over time, i'm developing all these. This is of course the medical explanation. However, i dont think it differs much from TMS. I read a very interesting book written by a neurologist and pain scientist that said that when there's chronic pain in the pelvis, the brain is constantly on alert and it thinks there's something wrong with the pelvis, therefore it sends sensitized signals to the area, so that you'll baby the area and stay off of it, much like you'd stay off an injured ankle. I dont think this explanation is very far from the TMS theory. It still involves wonky signals due to fear.
  9. Time2be

    Time2be Well known member

    Dear Nicole, I fully understand. But I think you are buying too much into these medical explanations which are more hypotheses than real proven knowledge. As you yourself say: the pain comes and goes. So, the pain can subside totally. Just one example: I had work to do in a different city and I was very much in pain. Long hours sitting and concentration. In the evening a colleague invited us home and my first thought was “oh no, I say I have a headache”. But then I thought it over and “what the heck, it doesn’t matter whether you have pain at your hotel room or with colleagues having dinner”. I went. It was a lovely house, fire was burning in the fire place and his wife welcomed us warmly with a glass of white wine. I suddenly felt the tension fall off me, my body felt light and warm and after 5 minutes I had no pain anymore. I enjoyed the evening. I had pain again next morning - the tension about the work was there again. But I will always remember what happened that evening. It tells me that it is not a question of time, it is a question of calming the nervous system down and this can happen in no time.
    Does this make sense for you?
  10. NicoleB34

    NicoleB34 Well known member

    yes, these things happen to me. i do have pain that shifts in intensity (or briefly goes away) when i'm in situations that either shock my nervous system, or thoroughly distract me in activity. If i can focus myself "in the moment" rather than stew on my loneliness and fears, my pain does change, though only momentarily. This is how i knwo i dont have permanent nerve damage. However i do have a fascination between the parallels between Central Sensitization and TMS. Many medical professionals would say TMS isnt proven either. I do believe i have it, however i also believe in CS because i think they are a very similar phenomenon. Howard Shubiner spoke on it, and he said he beleives they are pretty much the same thing, it's just that CS is more of the doctor's way of explaining the nervous system being high strung and causing pain. (it sort of ignores the psychological aspect). My pain syndromes all started with some sort of physical trauma, or infection, or bad reactions to meds, etc. That falls more in line with the CS model, however it's my fear and obsession that kept it "alive" (more of the TMS side of things).
  11. RozieHolland

    RozieHolland Peer Supporter

    These feelings of urgency are a consequence of unconscious feelings of rage'
    I know that.
    But what if you don't know where these unconscious feelings of rage came from?
  12. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    That's what the programs are for. You have to do the emotional work to figure out what your brain is repressing.

    The two free ones the forum offers are:

    Structured Educational Program (SEP) (on the main tmswiki.org site)

    Alan Gordon's Recovery Program (here on the forum)

    There's no signup required so it's easy to check them both out. The only cost is some time, and the only requirement is to keep an open mind, and to be willing to take emotional risks. Both use the forum for people to post as they work the programs. The SEP is usually a little easier to start out with.
    Last edited: Sep 18, 2022

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