All Is Not Well!!!

So I did it.

I made the decision to get the cystoscopy done today. It is where you go into the urologists office and they take a camera and take a peek at your bladder. I had talked to so many different people about the procedure, did it hurt, what are the expectations afterwards, and after some consideration made the choice to go through with it.

It was the worst decision of my life. When I woke up this morning, my pain scale was already at a 6 moving up, meaning it would be a worse day over yesterday, so I was reconsidering whether I should follow through with the appointment. Then I thought, well what if they find something simple, that justifies all this pain and it can be fixed and the only way they'll know is if I do this test. So I made up my mind to do it.

I went in pajama bottoms because they say you have to get undressed from the waist down so I thought it would be easier on me when it came time to go home. SMART decision by me. There is no way I could have put on jeans after this procedure.

So once I disrobed from the waist down and carefully sat on the padded table, with nothing to cover me but a paper sheet, the nurse came in, had me lie down, and she proceeded to wash me down with a COLD solution and then insert the lidocaine syringe. THAT REALLY HURT. Then she left and said the doctor would be in shortly. I had to ask my husband who came in the room with me, what they just did and he said they inserted a syringe into your urethra and pushed in the lidocaine. It felt like a searing HOT needle and the worst part is the more I sat there waiting to feel numb, it just kept throbbing.

Then enters said doctor, my urologist. Let's just call him Dr. L. He told me the procedure would last about 5 minutes, and then inserted the camera. MY pain scale went from a 6 to an instant 10. I couldn't even focus to watch him do his camera stuff, as I had my eyes closed praying for God to take me now and breathing through the pain as well as I could. I could feel every single time he moved the camera and I wanted to Scream!!!

Then he pulled out the camera and said he was done. As I tried to get up, I asked when I would get the results back and he said about a week. I asked what can I do for the pain I was in now, and he said, the medication he had already prescribed for me should be working. I told him that for the most part it really wasn't on a day like today. I couldn't even stand up straight. I was so doubled over in pain. He asked me to use the restroom while he continued to talk with my husband who was adamant that he give me something.

When I attempted to use the bathroom, it felt like shards of glass and my urine was lemon juice. I was almost in tears. When I came out, Dr. L looked at me, and said, "that wasn't so bad right?" I looked at him and said, "Are you kidding me? My pain scale went from a 6 to a 10." He said I could take AZO for about 2-3 days and that should help along with Tylenol or Advil. I was just in shock.

How could a well meaning doctor not see a patient in physical pain and not do anything? He said he doesn't like to prescribe narcotics because patients abuse them. Then he walked away. I told my husband that I needed to leave, but honestly the hardest thing was trying to walk out of the office with any sense of dignity I had left. I could only manage a partial half standing walking position. Once I was in the car, I immediately got my pryidium out and took the pill, just like AZO only a bit stronger, along with a full NORCO tablet.

My poor husband, there wasn't anything he could do except drive as quickly as possible to get me home so I could self treat and medicate. We also made a decision to find a more suitable doctor. While he may be convenient, he lacks the bedside manners most doctors are missing any longer. I cried all the way home hunched over wishing Jesus would take me right then and there. I couldn't imagine what my weekend would even look like.

Once the medications kicked in along with laying in a fetal position in bed with a hot water bottle between my legs, I felt somewhat better. I have been drinking tons of water to flush all the stuff out of my system and will be taking it easy today.

I am not blaming anyone for their recommendations to bite the bullet and just do it. I made the decision on my own, but oh how I wish I would have waited. This is NOT how I wanted to spend my weekend, drugged up, in bed, and in pain. For now, the pain is about at a 5-6 which is considerably better than when I came home. I had to write this in hopes that those with painful bladder or UTI consider that you might want to opt for being put out if they ask to scope your bladder. If you are already in pain in those areas, there is nothing they can give you that will make this procedure comfortable. The way I described the pain afterwards to my husband is that they made me a new hole to urinate out of. It was that bad a full 10 out of 10.

Prayer for pain relief for me.

Decision Made

Well to say that yesterday was a bad day is 100% true if you are discussing my level of pain. I was a solid 7 most of the day and at some point I relented to take a half of a Norco because it usually eases the pain. It took the edge of but not enough to where I could function normally, or as well as I can under these circumstances.

I hate this part of my life.

I know God will bring glory to His name in all of these much like the apostle Paul begged three times for his issue to be taken from him and God told him no in the nicest possible way. In 2 Corinthians 12:9-10, " But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Hard to imagine gaining strength through this but it takes all that I have not to lash out to anyone who is close to me, because I don't do pain well. I guess let me rephrase that, I can tolerate pain up to a point and then it becomes too much for me and I get frustrated because there is nothing I can do to find the slightest bit of comfort in all of this. 

I can't schedule a hair appointment because I'm not sure if it will be a good day, pain level 3, or a bad day pain level 7 and above. So my life in a nutshell has been staying within 10-15 minutes from home. Just taking a walk through the grocery store is horrible. I hate the way I feel and as I look around me, I can't be but envious of those who aren't dealing with this. A silent pain. One that shows no outward signs of what is happening on the inside. 

Last night I tried everything, from hot water bottles, Xanax, anti-inflammatories, pain meds, to all the comfort foods that is suppose to calm the irritation. I finally gave up by 8pm and opted to double my dose of Elavil based on people who have flare ups will double their dose and in the morning will feel much better. 

This morning I did feel a bit better, but that is the thing, mornings are generally good for me, but by the end of the day I am done. Like stick a fork in me done. So after some consideration and talking with family and friends I am going forward with the scope. I did get my urine culture results back from Monday and that is NO infection. I think I already knew it would rule that one out. Seeing as I have had 7 of them with all the same results over the last 67 days. I need some answers that I can't find right now. I would hate to think that it might be something that they can treat and I can move forward on all this and not look back. 

The scope won't really confirm IC, but it will rule out the things its not, like stones, ulcers, and other maladies of the bladder and urethra, but I need more answers than I have right now and it will also give me time to discuss pain options with my doctor to see if there is something I can take that will curb the pain level NOW, while I'm waiting for the Elavil to take effect. For some it happens right away and for others it happens over time. I've only been on it for a week. 

Thank you to those that I was able to chat with via Facebook messenger or the phone that have given me things to consider about having this done. At least with it out of the way, managing treatment now becomes the one priority to deal with instead of merely guessing about what it could be. 

I could definitely use prayer tomorrow. First of all, always, that God removes all traces of pain and heals whatever this is. Secondly, that I will have peace during the procedure and no pain. Finally, that in this process I will have a definitive answer and hopefully one that allows it to be treated and for me to move forward without having to deal with this.  

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?