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Day 1 Urethral Syndrome?

Discussion in 'Structured Educational Program' started by Scytaic, Aug 19, 2018.

  1. Scytaic

    Scytaic Peer Supporter

    Hi! I'll write a brief symptom history which has a couple success stories!
    My first TMS started in 2016, October. I'd come off antidepressants after 2 years too quickly and my anxiety/OCD went crazy. For some reason my brain was making me clench my butt muscles constantly on and off (like butt crunches) for 2 weeks until painkillers made me lose focus on the pain and it finally stopped. It was agony and it gave me a huge perineum bulge which is now a skin tag. After this I developed the fear that I'd damaged my pudendal nerve and that I was going to have my biggest fear, PGAD. I constantly thought about it and then some time in November, after a panic attack about it, I finally started getting the tingling sensations. At first it was just in one part of my vulva but then it started randomly appearing all over the pelvic floor. I started having stinging, electric shock sensations, a painful lump feeling in the pubic bone, tightness feeling, etc. I started taking the ADs again but they did nothing. In December for an unrelated reason, I ended up in hospital and had to get an MRI, CT scan, X-Ray and see some specialists (including a gyno after I told them about my pelvic symptoms). They said everything was clear and this reassured me massively (At the time, I believed PN could show up on an MRI) and after a few more months of believing and convincing myself I was healthy, everything went away and never came back!

    This happened again with the fear of Interstital Cystitis (again, because of the fear of PGAD) only this time it took me the realisation that it always went away with reassurance and distraction to make it go away. One day during a bad "flare up" my boyfriend proposed to me, I was so excited and shocked that my symptoms just went away instantly. They never returned since!

    Now, since February to May I've tappered off my antidepressants again, I was getting the odd mild TMS PGAD on and off - always went away and never returned with distraction and belief it wasn't real. But the next week after finally getting to 0mg, I've been getting a strange feeling of fluid being stuck in my urethra which only happens about 10-20 seconds after I pee. It's just a sudden twinge that lasts for a second but it's very very strong and uncomfortable and I also get slow/weak flow. When the doctor told me it wasn't a UTI, I instantly thought it was PN, IC or long-term/post-withdrawal syndrome/AD central or peripheral nerve damage (Which I learnt about during the first withdrawals) and I started getting a feeling like my bladder was constantly full. Some other symptoms have come and gone and all of them have changed their patterns at least once. My main symptoms now are, the stuck feeling in the urethra, slow/weak urine flow, bad stinging in and around my urethra which happens throughout the day and seems to have no relation at all to when I pee (started 5 days ago), the feeling of free-fluid in and around my bladder, pubic bone and urethra when I walk (started less than a month ago). I think that last symptom could be TMS but this stuck feeling and the stinging is the most real and persistent TMS symptoms I've ever had. I'm worried that they aren't TMS because of this and also because the first symptom came out of nowhere and was unrelated to any fear I had or usual TMS symptoms (I didn't even know having this feeling of fluid being stuck was a thing lol). I can't find this fluid symptom anywhere on Google at all and it doesn't match any of the conditions I'm scared of. I thought maybe Urethral Syndrome but I don't get pain during or after I pee at all. I haven't even got or had any pain besides this stinging which is only recent. I have to wait until October for my UBGYN appointment so in the meantime I'm trying out this and the other program here and I'm planning to read a couple of Dr. Sarno's books! :D

    Anyway, with the question, What would a life without TMS mean to you? I have no idea. For 2 years now it feels like my purpose is to obsess over PGAD and managing all the TMS symptoms I have. If I didn't have TMS, life would feel like a big empty, scary place full of dangerous possibilities and I wouldn't know what to do with myself or my life. I'd feel like I have no right to be too anxious to do things which means I'd have to do them, even things I want to do like travel, otherwise I'd waste my life. I wouldn't know what permanent thing I have to focus on because everything feels temporary, except PGAD/PN/IC/chronic conditions. Managing a chronic conditions feels like the biggest purpose I could have and maybe my subconscious thinks it keeps me "safe" in my bubble, indoors. I wasn't really expecting that to be my answer but it's very enlightening! Maybe I need to find a bigger and better purpose that doesn't stress me out and still helps me feel safe and when I get more confident, I can move on to different things.
    Last edited: Aug 19, 2018
  2. keenie82

    keenie82 Peer Supporter

    Hi, I can just say that everything you are experiencing is TMS. It is amazing how the brain can trick us into feeling fear. What is going on in your life that you feel stressed out about? I have similar symptoms and similar fears. The biggest thing I have found though:

    It's not the symptoms themselves that are the fearful distraction, but our fearful preoccupation with them.

    I feel soooo much better when I just accept the symptoms and stop obsessing over them. I wish this for you.
    Scytaic and Lizzy like this.
  3. Scytaic

    Scytaic Peer Supporter

    Thanks so much for commenting :) I've been going through a few stressful things but definitey the biggest is antidepressant withdrawing. I'm constantly scared of the long-term withdrawals they cause like PGAD or IC. :( I'm so glad you managed to stop worrying about the symptoms, that must have been so hard! I think I need to stop worrying every day that I'm going to develop this condition or that I already have. I noticed I get a bad few second flare ups whenever I'm scared of something (like asking a risky question, worrying about tripping down the stairs etc) I'm not sure why I get it every time I'm scared of anything it's so horrible though. :(
    Thanks again for commenting and the reassurance :)
  4. keenie82

    keenie82 Peer Supporter

    You definitely need to stop worrying about developing these conditions! Do you know what I have realized? I have worried over so many different things in my life. And obviously the ones that I never worried about at all or were on my radar were things that happened to me. Do you get what I am saying? You could worry and worry that you are going to get PGAD or IC but say a car accident could come out of the blue and happen. For me I worried so much about my son and his development from ages (birth to age 3) and yet I never even thought anything about me. What happened if something happened with my health? Well now that I am going through this TMS journey. It is hard. I still have days where I worry about the symptoms. I can flare myself just be reading about symptoms. But I also have beautiful days where the symptoms disappear when I am in a relaxed state.

    Sorry that you are getting flares when you are scared of something. It is horrible but remember that it does pass. Read through your history. Read and re-read about how your symptoms disappeared when your fiance proposed. Read about how your symptoms disappeared when your butt unclenched. Or how your symptoms disappeared after the health reassurance from your MRI/tests in December. What would it take for someone to tell you to make the current symptoms disappear today?

    My main symptoms now are, the stuck feeling in the urethra, slow/weak urine flow, bad stinging in and around my urethra which happens throughout the day and seems to have no relation at all to when I pee (started 5 days ago), the feeling of free-fluid in and around my bladder, pubic bone and urethra when I walk (started less than a month ago). I think that last symptom could be TMS but this stuck feeling and the stinging is the most real and persistent TMS symptoms I've ever had.

    Before TMS happened to me, I was diagnosed with pelvic organ prolapse in November 2017. OMG, just knowing I had that created crazy self-created symptoms in my pubic area. I had feelings of burning while sitting, overawareness of my genitals (ie could feel my underwear against my skin), and overawareness of my anal region. It was nuts. Then when the bladder things started for me all that disappeared. So I am sure if some other health scare came up for me the bladder would disappear and the focus would turn over to the new 'worry.'

    If you are focussing so much on your pelvic region you could be self creating these things. Slow/weak urine flow can be related to pelvic floor. It could simply be from you gripping your pelvic floor. Even the urethral stinging can be from pelvic floor as well as stuck feeling in urethra. The feeling of free fluid could just be overawareness and self created by your brain as you are so very focused on the area.

    Do you meditate? I notice when I meditate and let myself fully relax I can honestly feel my pelvic floor unclench. I would keep up with the program, keep your appt with the OBGYN but put the worries of IC or PGAD out of your head. You are not going to develop those.
  5. Time2be

    Time2be Well known member

    Dear Scytaic, your worries make you feel sick. The feeling in your urethra is a common symptom of pelvic pain syndrome, which is TMS. I don’t think there is anything wrong with your bladder, urethra and other parts of the pelvic. Anxiety makes muscles clench. Some people clench in the shoulders, others in the pelvic. From my experience constant worrying fuels the pain. Just try to enjoy your life! The odd feelings will subside.
  6. Scytaic

    Scytaic Peer Supporter

    Thank you both so so much for the reassurance. :) I've tried meditation before and it does help a lot so I need to keep at it. :) I'll keep trying my best too. I might be starting uni next week so I hope it'll distract me. :)
    Thanks again I hope you're both doing well!
  7. keenie82

    keenie82 Peer Supporter

    Just commenting to ask how you are doing now?
  8. Scytaic

    Scytaic Peer Supporter

    Hey! Thanks for asking, I still have the twinge/stuck problems in my urethra but I don't care any more at all. I haven't really been active in finding the root cause or curing it with TMS because I'm dealing with some new symptoms that I'm finding much worse so they're my first priority atm. I've met 2 other people who have the same urethra problem who also have anxiety and are otherwise healthy so I'm guessing it's just stress/anxiety. It's irritating but not a big deal and doesn't always happen - definitely seems worse when I'm stressed so it must be a tension/spasm thing. :)

    Oh and just an update on my symptoms!
    The stinging and full bladder feelings have all gone. The only thing I have left is the fluid stuck feeling which can rarely be a bit painful - after I pee. The intensity varies and sometimes I won't even get it at all but I usually get it at least twice a day. Sometimes my pelvic floor and right side of my bladder will feel full afterwards too but they don't last long. Sometimes the twinge can feel so bad it spreads to the rest of my pelvic floor and other times it can be so mild it would take a lot of focus to actually feel it. It's weird but oh well, there's worse things to feel... like pgad which is what I'm getting lately. Lol :(
    Last edited: Dec 12, 2018

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