I had to go off Elmiron over the summer for other medical reasons. I started it back up again several weeks ago and haven't seen the benefit like I did before. Maybe it hasn't kicked in yet.
I'm in a relationship and on birth control. Birth control has been linked to pelvic pain, but usually to its onset, not its worsening mid-condition. Still, I don't trust it.
My pain isn't really worse -- it just hasn't gotten better with Elmiron like it did last spring. I blame myself for not taking it regularly enough, and surely I was not taking it exactly as prescribed while I was working all kinds of hours during the Indians' baseball season. But I doubt I've been taking it any more inexactly than in the spring.
Here's the thing. I'm up in the predawn hours because I got up to go to the bathroom and peeing felt like being ripped in half. Which is normal. And I lay in bed waiting for the pain to subside, but I didn't doze off again like I usually would. Instead my feelings got hurt.
Penelope Trunk wrote in a recent blog post, "When you are living a nightmare you can't process. You are just surviving." When I read that, I wondered if my life counts as a nightmare. She was talking about childhood abuse. This is not that.
But tonight I thought of how when my pain is distressing, my mind jumps to rigging my neck to something and kicking over the chair. Then I thought, well, that's probably a thought habit. That's not a nightmare.
I have a thought habit I prefer for its impossibility. The earth falls away before my feet. I can step off without waiting, without preparing. Preferably I'd replace the other habit with this one, but they pop up in different circumstances. When I'm sitting still waiting out pain, it's my neck. When I'm moving around walking through pain, it's the cliff.
I haven't killed myself yet so I figure I probably won't. But I couldn't hold judgment against anyone who did, and people do.
I think I'm too much of a coward to kill myself. But when you cross from this space to the other one, fear is a different thing.
Last fall I crossed to that other space, and I stayed with my parents and attended therapy five days a week for two months. I put myself in a safe space. I'm still here.
Here at five in the morning, I see the reasons for living. I am not in constant emotional torture. People at my current job speak of me as a Pollyanna. Maybe that is relative. It's certainly learned. I hope it's true and not compensatory.
I would just like some progress. Some degree. If urination could not feel destructive. If I could forget about my pain for stretches of the day.
Why am I a miserable character? This pain has hurt so many people in my life. The thought of my grandmas worrying about me. I will likely see the sunrise today.
Oh, I see precisely where you're coming from and I can't imagine many in our shoes wouldn't have many of the same thoughts go through their minds. This morning, I spent a good hour waiting for pain meds to kick in whilst weathering a thunderous storm of rectal spasms. Utter agony. Sometimes the pain in my pelvis is so bad that I want to slam it in a door bc doing so would at least give me a tangible reason for my pain that I can see and source, you know? Anyway, it's been a long time since we spoke, but I've kept up w your blog, I'm sorry you're still suffering and I feel your pain, friend, you're not alone. I hope you can find your way back to some relief soon.
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Oh man I used to have horrible rectal spasms along with tons of bladder and pelvic pain, basically every symptom of pudendal neuralgia and IC. Turns out it was all because of labral tears in my hips (and hypermobility and muscle imbalances). I never had hip pain, just pelvic and later back pain. 2 hip scopes and lots of postural restoration (PRI) based PT later and the symptoms are 90% gone.
DeleteI have found relief being a part of a trial drug AQX 1125 at Cleveland Clinic. Please contact me. I have read your blog through my years of constant bladder burning and endless, but pointless surgeries and medications.
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