Hunner's Ulcers Explained & Surgery Update.

If you had read my blog titled 'Update:its been awhile,' chances are you took notice of the bladder surgery I had on May 20. But just in case you missed it, I had a speciallized laser/nerve ablation procedure where the specialist went in and burned the  that I had developed over a short period of time. 

For a disease that many researchers say does not progress, my case of Interstitial Cystitis surely had a mind of its own because essentially it started out in 2007 like 90-95% of those with IC as 'Non-Ulcerative,' and became 'Ulcerative' within my 5th year of struggling with it. Even today, this disease is still very mind-boggling because it still confuses even some of the most top researchers in the country. They're no closer to a cure than they were when the disease first came about it seems.

Having the hunners ulcers completely changed my game plan because I am certain that it caused my Botox treatments to no longer be effective. With more inflammation developing, the spasms and pain intensified by the minute. How on earth did I get so unlucky to be in the 5% who have Ulcerative IC??

But I do have good news to share, despite having to undergo so many treatments over the years in order to finally have some relief.

I will however start off with the before symptoms so you can kind of get an idea of what life was like prior to this surgery to paint a clearer picture.

I may have dealt with 'IC' for the last 6 years, but around the 4th year or so I began to slowly get a hold on how to 'cope' per se with my illnesses.

There just comes a point where you begin to accept your symptoms for what they are and try to live your life amongst the pain with the treatment that is available to you.

Fast forward to early summer 2012, I began to notice a new stronger 'twinge' of pain within my pelvis that radiated deep into my lower back, causing me to struggle to walk. Everything I knew in terms of how to manage my symptoms went out the window because the disease had stepped up a notch. Everyday I dealt with the oh so familiar "IC belly, battery-acid burning, razor blades,' kinda feelings x 100

But even more painstakingly difficult was the growing amount of times that my bladder actually functioned on it's own, which meant I was having to self-catheterize anywhere between 12-15 times a day due to IC as well as spasms. My body felt at war with itself as my Lupus along with my other auto-immune diseases participated in this vicious pain cycle.

I went from being able to leave my house on occasion to hardly leaving my bed at all other than for necessity. To some, that sounds like an exaggeration, but in all honesty this is how it was for me. And it certainly wasn't a state I wanted to be in. When your 27 years old and can barely take care of yourself, let alone get around, your entire outlook on life becomes rather grim. You start to wonder is this how it's going to be for the rest of my life? I wouldn't exactly call it a pity party but a mere look into what sort of future lie ahead for me if I kept on this path.

And so just like that, my symptoms simply began to skyrocket to a whole new level. I could easily report on a pain scale that on average it was between (8-10+) daily that medication  seemed to little that I could do unless I found some sort of medical miracle...

Call it intuition, but I decided to give Botox surgery another chance in late January of this year. And low and behold that is when my specialist found the hunner's lesions, which ultimately brought me to the place where I am now.

With the hunner's removed from my bladder wall nearly 4 months later, my IC would begin to show signs of improvement. That intense, debilitating pain that I experienced 24/7 lessened, but that wasn't the only good outcome of this surgery. 

The next best things may seem small in anyone else's mind, but for me they feel like 'medical breakthroughs." Because for the first time in nearly 2 years I could void on my own without the use of a catheter more than 3-4 times a day along with decreased pain levels that my prescribed medication could now address. I definitely feel like my pelvic floor dysfunction has gotten better as well due to not having to strain to void and inducing spasms with the use of a catheter. My abdomen no longer feels like it is going to explode from pressure as soon as I wake up, although I mornings still remain the hardest time of the day besides bedtime. All in all, I feel a sense of relief within my body and all I can do is thank both my doctor and God for allowing me to gain some control over this illness until I need surgery again.

No matter how much i've gone through to get here, I know that there is no giving up and it's only up from here. 

My advice for anyone who is at an absolute low point in their journey with any of these pain disorders is to remain positive. Just remember that no matter how difficult of a time you're having, there is a silver lining, but you must be patient.