Wednesday, April 12, 2017

To Scope or Not To Scope, That is the question!



Today is a bad day.

What I mean by that is I rate most of my days now by my pain scale and today is a 5. The lowest I have even been able to get it down to is 3, although there are moments in that 3 day where I almost feel normal. Today is 66 days since I've been dealing with the issue of IC or Interstitial Cystitis. It is all the signs and symptoms of a UTI or bladder infection but without the infection part which means that taking things like cranberry juice, cranberry tablets, over the counter meds like AZO doesn't work. AZO is only supposed to used for 2 days at the most and for me, 2 days isn't going to cut it.

So on Friday at 8am I am scheduled for a cystoscopy, which is where you are given something to numb you locally while they insert a camera for a look inside your urethra and bladder. The procedure is supposed to take anywhere from 5 minutes to 15 minutes and there is expected to be some discomfort following that for a day or two.

While it will rule out what it might or might not be, the issue I have is the pain that might accompany me during the procedure and for sure afterwards. Right now I am attempting to manage my lifestyle around 3-5 on my pain scale with taking Elavil 25 mg and taking Marshmallow Root capsules before every meal. If this diagnosis is in fact IC, there is NO cure. Taking things like AZO will NOT help my issue.

If it were only a UTI or simple cystitis than those might be options I can benefit from. I hate looking at my life now and wondering, "Is this as good as it will be?" I am almost out of options for the treatment of IC, besides increasing my dosage of Elavil which may or may not help. I hate that every time I try to talk to my doctor he simply dismisses my issue of dealing with ongoing pain. He simply writes a new prescription and tells me to follow up in about 4 weeks. 4 WEEKS?!!! What about the pain I am dealing with now?

Now don't get me wrong, I don't want pain meds just to be on pain meds forever, and even the one's that do help don't allow me to function in any normal level of being able to move on with my life. Ibuprofen, the doctors choice prescription is a joke. If simply taking that would help, I would not be coming to the doctor. I have taken Advil, Aleve and nothing helps. I have even succumbed to trying the Ibuprofen but NOTHING. Don't get me started on Tramadol, it does nothing. NOT ONE THING for me. That is usually doctor's recommendation # 2. I had to beg my primary to give me a prescription for Norco and I am able to take half of those and keep my pain level way down, but it doesn't allow me to be up and about, it is sitting in a chair or laying down.

Truly I am at a loss at this point between toggling with cancelling everything, postponing it for a later date, but I think well if I am going to postpone it, why not just bite the bullet like someone said and just go for it. Oh how I wish this was treatable in a sense that you take some pills for a couple of weeks and you're back to normal. No pain when you urinate, no acid like pain in your bladder and of course the constant need to feel like you have to go and of course don't.

For now it is a depressing time and I find myself toggling between crying a lot, praying daily, and of course researching anything and everything anyone with IC has tried. Is there anyone out there that has this and can help me? ANYONE?

If so, what has worked?

How are you dealing with your pain and discomfort?

Are there things you are doing that have worked or not?

Advice?

2 comments:

Terra Hangen said...

I empathize with the pain you are in, and have no health tips to share, simply my prayer that the best answers are found for you and that you have healing.

Elizabeth said...

Kathleen, did you get my last email? I offered to call or skype with you but you will have to send me your phone number or skype name. I could call you anytime today. I am 6 hours ahead of Eastern Standard Time. I have too many thoughts to type out here. Blessings.