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I’ve lost all hope. Bladder Pain/PN

Discussion in 'General Discussion Subforum' started by LouLou, Dec 25, 2018.

  1. LouLou

    LouLou New Member

    I’m in a world of sadness and fear and being Christmas time is just making me feel worse.

    I have bladder issues, I’ve been diagnosed with PNE and have been managing symptoms for over 8 years. I’m 38 now and until recently I was the best I’ve been in years.

    My issues are with food and drink I consume, and part of me believes that it’s psychosomatic and part of me is so fearful that it’s just a damaged bladder.

    It all started with I had a terrible bladder infection. The infection was treated at the time but the symptoms never went away. It was left with a irritated uncomfortable bladder. I started on the pill a few months after my symptoms started and for 2 years I was cured. Symptom free! I could drink coffee, alcohol, I could have pain free sex, I could exercise however I wanted. Life was good again. Then after the birth of my first child discomfort and an irritated bladder came back into my life. Then one day after drinking a coffee the real pain and discomfort started.

    At the time I was reading a lot about IC and started following the IC diet and I think that where my relationship with food and drink changed. I started fearing everything acidic and spicy, I just feared consuming something that could potentially hurt me.

    This kicked up a notch after my wedding day. I wanted to drink and have a good time at my wedding so I drank a decent amount of Vodka (had a great time), and the next day I ended up in hospital in extreme pain needing a catheter as my bladder stopped working. Boom! More FEAR!

    From then somewhere along the line I was diagnosed with PN, put on drugs and had a few nerve blocks (which did help) and told I was a candidate for surgery. That diagnosis never sat well with me and the PN Hope website just created more depression, anxiety and fear.

    Fast forward to now and about 12 months ago and I slowly broke down the fear walls. I beat an addiction to Valium, I stopped taking heavy pain killers, I started to look into TMS, I started working with a TMS therapist, I changed my meds and I slowly introduced a little alcohol and foods on my ‘bad’ list into my life. I was the best I’ve been in a long time. Not entirely symptom free but a whole lot better. Sex wasn’t painful, I was running again! And exercising 5 days a week (which I love to do). The fear was slowly melting away. I wasn’t having anxiety about what I put in my mouth. I had my life back!!

    Then about 2 weeks ago I got a little adventurous and decided to drink some wine (cider was the only alcohol that was on my ‘safe’ list). And boom, since then I’ve been the worst I’ve ever been and I continue to get worse. Every time I drink ciders it gets worse and now I’m really bad. I have pain all day, the pain killers aren’t really helping, I get pain even after a bowel motion for god sake! I’ve regressed so much in terms of what I feel are safe foods. I can only drink water and I’m just a miserable mess.

    It’s Christmas time and I’m surrounded by my family who are drinking and enjoying all the foods they want and I’m am just living this internal hell. I’m so depressed, scared and utterly devastated. I’m the worst I’ve been sincey bladder stopped working. The irony is I got married where I’m having Christmas and it’s the first time my whole extended family are here since my wedding. So it’s bringing up lots of emotions from then. It’s like dejavu!

    My questions are does anyone else who has bladder pain struggle with pain from food and drink? Am I a TMS sufferer or just a person with a damaged bladder? I’m losing faith in my TMS diagnosis!

    I just really need a friend right now. No one understands and I feel so lonely at what is supposed to be a happy time of year.
  2. AnonymousNick

    AnonymousNick Peer Supporter

    Sounds like you've gotten over this before. It would be worth looking into the feelings that might be coming up this time of year. I highly doubt that wine/cider brought about your downfall. :) Throughout your post you have a wedding, the birth of a child, and a big holiday that precede symptoms -- you're going to be all right. Get into the psychological and not the physical as Dr. Sarno would have suggested. I know it's not as easy as it sounds, but we're all trying our best at it. Good luck and happy holidays!
    suky likes this.
  3. Snowman

    Snowman Peer Supporter

    Have you tried CBD oil? Also don't keep looking into ic . I done that. And I even fell into the looking at toothpaste shower gel everything that said acid In i was scared of.... read success stories here only and Also try D-mannose maybe.. I'm not going to list other stuff going on with me. Unless a pm if you want to know. Lol...
    Look in a mirror and tell it to fuck off scream into a pillow and clench all your muscles including bladder . Helps me alot some days.
  4. SarahR

    SarahR New Member

    Hi Lou Lou,
    i'm so sorry to hear your'e in so much pain. I know it can feel so dark and lonely at times. I don't have a lot of bladder pain, but I do have pn/pelvic pain. All I can say is stay strong and keep pushing yourself. You really have to dig deep and say to yourself 'this is not going to be my life' . You have to fight with your whole heart to get your life back. I know it is not easy to have hope when your'e in the midst of suffering. But hope is everything I think.
    My symptoms started about a year ago, I can't even imagine living with pelvic/bladder pain for 8 long years. Since I have read about Tms my life has become a lot fuller. The pain is still there, but it it doesn't scare me as much anymore. I feel like that is what has to happen. To gradually reduce fair. Let the storm pass. Even at the climax of your fears surrender and accept. At the top when your feelings seem to engulf you that is the moment above all when you have to accept and surrender. I know from my own experience it is very very hard. But when I let the pain just be there, I feel my muscles relaxing instead of tensing up. As you lose your fear and regain confidence you will lose interest in your symptoms, you begin to forget yourself for moments. I walked my dog yesterday and after an half hour of walking I noticed i didn't think about my pain, while still feeling it.

    Also what really helped me was taking a small dosis of antidepressants. It reduced some fear and from there on I could take a second step towards heeling. Have you read hope and help for your nerves by claire weekes? I found that book really helpful with dealing with fear and anxiety around pain and symptoms.

    Keep telling yourself and your'e brain over and over.. you are safe, you are ok!

    I wish you well. Hope this helps a little.

    JanAtheCPA and westb like this.
  5. Time2be

    Time2be Well known member

    Loulou, so sorry that you in so much pain. I know how it is. I have myself bladder and urethra pain. I have been diagnosed by an urologist with pelvic muscle tension and that it is psychosomatic/TMS. If you have the non-ulcerative type of IC, then it is most probably TMS.
    My suggestion would be to see an urologist. I don’t know where you live, Dr. Eric Robins in Los Angeles seems to very good and he knows all about mind-body syndromes. I think you should have someone to check your urine and your bladder. If they cannot find anything, then you can consider it as TMS. Don’t expect a miracle, but it will get better. You could follow the course of Alan Gordon (see top of this site).
    Food and drinks can irritate a sensitive bladder, but it can also be learned behavior, your fear makes your bladder hurt rather than the food or the drinks. However, maybe you give yourself some rest now and eat and drink what you tolerate well. I do that also when I have a rough time.
    Best wishes!!
    keenie82 and JanAtheCPA like this.
  6. LouLou

    LouLou New Member

    Thank you for your comments. I have read a Claire Weeks book but I think it was another one. I’ll look into that one.

    After I wrote this yesterday, I got out of bed, took some pain killers and pushed through the pain to take my daughters to the beach. I wanted to cry because of the discomfort and pain, and did break down a couple of times but I just was so determined to not let the pain get the better of me.

    I sat at the beach all day and slowly over the course of the day the pain melted away. I just made a really conscious effort to enjoy myself and live in the moment.

    I don’t know if it was the pain killers or my determination, but something worked. I somehow gained my strength back and enjoyed the day, and as the day went on I relaxed and released my negative thought pattern.

    Today I woke up with minimal pain (amazing)! I am so happy, I’m going to continue to push through and just let go of all the negative thoughts and internal blaming.

    Thank you for your advice and taking the time to write to me.
  7. LouLou

    LouLou New Member

    Thank you, I’m definitely going to try the screaming into a pillow. Can I ask are you better now? Using TMS as your guide?
  8. LouLou

    LouLou New Member

    Thanks for your support, I have seen a urologist and had a cystoscopy, which came back normal. She sent me to the pain specialist who diagnosed me with PNE.
  9. Snowman

    Snowman Peer Supporter

    I ment to mention. Try de caf coffee or tea with
    Some days yes. I also have fibromyalgia type pains in calf and forarms feeling tight in mornings.... I use no antideprent anymore as they made me feel worse. I try to use the tms approach along side using dnrs and watching videos on you tube . But please don't go to deep into ic food relations . Try drinking de caf coffee or tea . Pm me if you want a chat about things that might work for you or if you ever need a chat about anything ... more then happy to help... x
  10. LouLou

    LouLou New Member

    Thank you. Yes I’d love to chat more. My urologist ruled out IC a long time ago so I’m in the mindset I don’t have it but I am funny about foods and drinks due to reading about it all those years ago and the experiences I’ve had with pain and my wedding.

    How do I PM you?
  11. miffybunny

    miffybunny Beloved Grand Eagle

    Hi LouLou,

    I had full blown interstitial cystitis right after I got married and moved (interesting huh?). Anyway, it was absolute hell on earth but it WAS TMS. You also mention nerve entrapment. I would pretty much bet my bottom dollar that's TMS too. I don't think Sarno even gave credence to that idea. You have formed mental associations with triggers (for, drink, sitting etc. etc.etc.) but it's all fantasy and placebo effect. I highly suggest you seek therapy from the Pain Psychology Center (by phone) or a similar TMS program. Your story sounds like classic TMS to me. The timing of your symptoms with your wedding are glaringly obvious and it has nothing to do with what you drank.

  12. LouLou

    LouLou New Member

    Thanks Miffy, your post gives me confidence. I’m talking to a TMS specialist from the Centre but haven’t had a session for a while. Time to start my sessions again.

    Thank you again x
    miffybunny likes this.
  13. SarahR

    SarahR New Member

    It is so good to hear you enjoyed your day at the beach despite the pain! I think you did good by just not letting it get to you. Pain feads of your attention, so when you shift your attention to emotions, nature or people around you it slowly melts away.

    Also what really helped me was reading succes stories from people who suffered the same pain but have come out on the other end. I send a few of them private messages and it really helped strengthen my belief in the tms diagnosis. I know there a number of IC/bladder pain succes stories on this forum. Also reading about 'pain and the brain' information from Lorimer Mosely helped me. Visit his website 'tame the beast'. And 'the great pain deception' by steveO showed me that this was not going to be an overnight quick fix. But what really helped me the most is facing my triggers head on. Riding my bike, sitting for longer periods and working out. While saying to myself over and over 'I cannot hurt myself'. If everything is fine on the bladder scan it is tms and therefore you cannot hurt yourself. Start drinking or eating that thing that you fear little by little and deal with the flair one day at a time. For me a flair just represents pain now, nothing else. I say to myself I rather deal with the flair right now then deal with them the rest of my life.

    I hope this helps so more. If you ever need to talk you can always send me a message. Good luck on your healing journey! I know you can do it!

    Last edited: Dec 27, 2018
  14. LouLou

    LouLou New Member

    Thank you Sarah, this is a really big help. There is a lot of doubt and confusion about what is going on with my symptoms and pain. Some days I’m stronger than others but I can only keep trying to keep the fear at bay.

    I will message you. Thank you for reaching out.
  15. readytoheal

    readytoheal Peer Supporter

    I agree. Don’t back down with foods you fear. I started getting better once I stopped fearing foods. Fear=symptoms. No fear=no symptoms. So I kept slowing challenging but when I felt good.. it’s hard to do in a major flare. Although honestly I’ve pulled out of flares quicker by not reverting to a “safe” diet. Give that up as soon as you can. The fear, not the food, is giving you symptoms. That said, I still drink a healthy amount of water to keep things flushed. But that may be me tms-ing still. I also tell myself alcohol is a muscle relaxer so it’s good for my bladder. I have no idea if that’s true but I’ve worked hard to convince my mind that wine is safe and so it no longer gives me symptoms.
    LouLou likes this.
  16. miffybunny

    miffybunny Beloved Grand Eagle

    I just want to chime in with readytoheal because this topic sort of drives me nuts. The problem is, we are soooo conditioned by society and collective false beliefs, that we internalize them and think they are TRUTH. Unless you have some kind of allergy, all of these associations with food are psychological...just as people have associations with certain positions or times of day, or the weather. It's all nonsense!! I read your story a couple of times LouLou and you are classic, textbook, poster child TMS. You need to stay away from neurologists, urologists, bladder problem message boards and websites and books about diets for these things. All they do is reinforce your FALSE BELIEFS. I spoke to someone by phone who was going to and RSD support group. I told her that as long as she kept engaging in those groups and going on those websites, she would never ever get better. You have to cross the river as they say. The only person that can make you better is you. You won't find it anywhere outside of yourself. If you need therapy or even an antidepressant to help you reason better, I don't see a problem, with that. At the end of the day though, it will all come down to you.
  17. LouLou

    LouLou New Member

    Thank you for the advice. I’m looking forward to the day when wine is safe.

    It sounds like you’ve done a lot of wonderful work mentally to get where you are. Would it be ok if I PM you?
    readytoheal likes this.
  18. LouLou

    LouLou New Member

    Thank you Miffy, you’re right, I know I’m a classic case of TMS, I have the personality type, I’m crazy critical of myself and I’m highly emotional.

    I believe in TMS and have even had Dr Howard Shubnier review my MRI and confirm the TMS diagnosis. If you spoke to me a month ago I would have said that I’m 100% sure I a classic case of TMS.

    But this recent flare up of symptoms and pain and really got me unstuck. I’m second guessing myself and I know my symptoms have got the better of me.

    You are 100% in all your advice. I just wish I was mentally stronger to tackle head on (literally)!

    I’ve made bad associations with alcohol and foods to pain and it’s going to be an uphill road to undo that mentally, but I’m going to try.
  19. miffybunny

    miffybunny Beloved Grand Eagle

    Hi LouLou,

    When we are in pain or have symptoms, fear sets in, which in turn fuels the doubt and the TMS strategy. The pain is not some outside force that is rendering you a helpless victim. You are the one who is actually creating the pain so there's no need to be intimidated by your own self. Just because you have certain thoughts, or associations, or a doctor made a suggestion, or you read some anecdotal accounts of diet or drink being a factor for ex., does not make any of these things TRUTH. In the case of chronic pain, when you hear of people being cured or managed through diet it's all placebo effect. You don't have to buy into these notions propagated by society or even doctors. My dad was a doctor but that doesn't mean they know everything. There is far more they do not know, especially when it comes to the brain. There is a lot of research going on right now about this.

    Dr. Shubiner gave you the golden stamp of approval. He's an MD. Heck, I'm no MD but it's ridiculously obvious that you have TMS. What you need to do now is figure out what is going on in your LIFE that could be causing you to repress emotions. It could very well be chronic thought patterns that you keep falling back into. It could be that there are things going on in your life that your brain is trying to distract you from. It's not about the pain, it's always about your life and your feelings re: your life. The more you focus on your bladder and what you eat or drink, etc. and all these distractions, the more you are fueling the TMS.

    This is not a linear process. It's normal to have doubts and setbacks and flares. The key is not to panic. The key is to know that no matter what, you are ok and you're going to handle it. You created it and you can uncreate it. It's just a matter of getting out of your own way. Not overthinking and not thinking you need to do something dramatic or requiring effort. There's nothing to tackle or be strong about. It's quite the opposite. It's the difference between being in a resistant state vs and allowing state.

    You can pm me any time!

    suky and LouLou like this.
  20. miffybunny

    miffybunny Beloved Grand Eagle

    Something I just wanted to add. You wrote "I look forward to the day wine is safe". The question is when do you feel safe? What makes you feel safe? The wine is symbolic of something you may be lacking. Feeling safe is probably one of the most important things when building and having confidence. If you don't feel safe in the world or with your own thoughts etc..., it's hard to feel confident. Something to think about and discuss with a therapist for sure!
    LouLou likes this.

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