Health Update: Interstitial Cystitis.

in life •  last year

I know I said I would be returning likely with good news, but I don't really have good news.

My urologist didn't give me a cystoscopy WITH hydrodistention and just said my bladder "looks healthy" but assumes it must be IC as everything else was ruled out. Now, the thing is I am unable to work aside from mturking. I am now drowning in more debt that ever while working for tiny amount of money so I can afford to have a roof over my constant agonizing pain and suffering. I NEED a clear diagnosis and I need someone who is experienced with IC. I don't know if that is even an option in my city and I can't travel farther out. I applied for disability which can take years and already learned they are skeptical of young people with this disease so clearly an "I guess she has IC" isn't going to back up my claim but also he didn't know about many of the newer meds and I get the feeling his idea of how to treat IC is outdated and limited.

I did a cystoscopy in office where both the nurse and doctor seemed to not believe me when I said it was excruciating. I ended up being left up on the super high propped up chair for 20 minutes where I ended up just crying because the pain was so bad. My doctor threw elavil at me which I really didn't want to try but I am going to give it a solid chance since he said he would look into other meds and will switch me if I want to later. I see him again in 6 weeks. Before finding a new doctor and going through the stress of starting this all over again when I am in constant fucking pain and can barely handle leaving my room I am going to give him a chance to properly diagnose me.

I am going to cancel my weekly bladder instillations after reading case after case after case of them doing more harm than good and being excruciatingly painful. I can't deal with that once a week for five weeks right now. I would rather give the diet and meds more times to work.

The thing is there is so much more wrong with my physically and mentally and even though I have insurance it's all on the back-burner because I pee every 20 minutes and am in so much pain I can't handle more appointments.

So, no good news today. Today, I ended up in tears scrolling through facebook because I was watching other people out living their lives and reminded that my life is working for small amount of money to keep up this torturous existence.

Please refrain from giving me your religious and spiritual comments, or medical advice. I am not religious. I do not believe the Universe has a plan for me and positive thinking WON'T heal this, trust me. I just want to write about my illness, I don't expect it to be fixed.

Even though this sounded doom and gloom I am still standing, I am still fighting, I am still sober, I am on the IC diet, I am taking my meds. This is what chronic pain and disease looks like. There are bad days. There is suffering. I hold this all back almost every day but sometimes it needs to come out. Thanks for being a platform where I can get this stuff out.



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I'm sorry that the appointment didn't go better than it did, but at least it's a start. Hopefully the medication will provide some relief without side effects.

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It's almost unheard of to have no side effects so that is very, very unlikely. Most people gain a lot of weight too but if I got enough relief to walk and maybe even bike again it'd be worth it and I could manage.

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Yes, getting relief from the pain is the primary thing.

Even if doctors are pathetically inadequate, it's often better to stick with one, at least for a medical rexords. Congrats on rhe diet and sobriety.

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I know I am trying but if he won't properly diagnose me it won't be better at all. I NEED a diagnosis. I am going to give him a chance though. I don't want to switch but I may have to if he won't do what I need.

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Also, if he exhausts his very limited repertoire of treatments I will need to go somewhere else to find relief...

I am still standing, I am still fighting, I am still sober, I am on the IC diet, I am taking my meds.

I consider this part good news. I wish you less bad days and more good days, going forward!

I hope your diet and meds work 🤞🏽