An unexpected miracle

A couple of weeks ago I had an appointment with my urologist. I walked out of his office with tears in my eyes. I stood before the elevators and tried to grasp what had just happened.

This wasn’t the first time I’d felt teary and overwhelmed after leaving his office. I’ve been seeing the guy for two decades to treat my interstitial cystitis. I’ve seen his receptionist and nurse retire. At one point I went so often that I noticed any small change to the waiting room layout and pretty much the entire office knew me by name.

I’ve left there in significant pain. In the past, I’ve walked out of there disheartened because I knew there were not answers for my pain and discomfort.

But I had tears in my eyes following my recent visit for a different reason. After going down to yearly appointments to keep up with my medications, my urologist said something I truly never thought I’d hear him say. He told me it’s up to me whether I return to see him again. He was releasing me because I didn’t really need him any more.

Even now those words choke me up. This journey I’ve been on started when I was 3 years old. There have been highs and lows. I’ve had times that were miserable and a short period of time in high school and college when I was in a remission. But since my symptoms returned when I was 23, they have taken me on a journey I wouldn’t wish on anyone.

About healing

Being in your early 20s with health struggles is difficult. None of my friends really, truly understood where I was coming from. I sought out others with IC and others with chronic pain. We knew the struggle. We understood feeling left out, trying to juggle appointments, figuring out how to pay for everything and praying desperately for healing.

When I was younger, I thought cancer would be better. Cancer is something you either get better from or don’t. It doesn’t just continue indefinitely. Through the years I’ve learned that’s not even close to being the case, but when you are struggling with finding hope through constant pain that nobody has a solution for, thoughts get crazy.

I won’t bore you with details of all the various treatments and medications I’ve tried. However, I do want to share with you my journey about healing and my faith. In my mid-20s, God showed me I was putting my hope in the next line of treatment or medication instead of putting my hope in Him. I wasn’t truly living faith. I shifted my perspective and began keeping my hope in God and trusting that whether any treatment worked, God would be with me every moment. And He has been!

But then that begs the question of supernatural healing. I have seen God heal people. My dad is alive today thanks to the divine touch of our Heavenly Father. I know God has and can heal people. He wasn’t healing me, though, and that was something with which I struggled. A part of me thought since I’d put my hope in God more than in medicine, then I’d learned my lesson, and He’d heal me.

I’ve prayed for healing. I know others have prayed for healing on my behalf. However, God said no. Eventually, the Holy Spirit led me to pray for healing from the need to be healed. That sounds confusing, I know. I was just struggling so much with wanting to be healed that it was getting in the way of my relationship with God. It was affecting me in many ways, and none of them were good. When sermons were about being healed or I felt like other Christians were implying anyone would be healed with enough faith, then I got upset. My heart ached and I’d feel discouraged. I thought I was living faith, yet sometimes I didn’t feel like it.

My prayer for healing from the need to be healed was answered pretty quickly. Over time, I became OK with the fact that my healing would come in heaven rather than on earth. Of course I’d love to be healed before I die, but if not, then I was OK with that. I knew beyond a doubt that God would continue to be with me every step of the way. That was what living faith looked like to me.

And God has been with me every step. He has strengthened me when I was weak. He’s comforted me when I was alone because I didn’t feel up to leaving the house. God surrounded me with a loving, caring family who have been there through the difficult days. I am so blessed and thankful.

Learning from having a chronic illness

Having a chronic illness has taught me many things. I’ve made friends I wouldn’t have otherwise and I’ve done work I wouldn’t have otherwise. One of my best connections has come through the IC Network, a group who advocates for IC patients and works to educate and help us. I am blessed to write for them regularly as I have been for the past nearly 20 years.

My work has also given me the ability to do research about IC and learn about the latest treatments and theories. I’ve interviewed leading researchers in the field and listened to their presentations at various urology conferences. I spent my 40th birthday at a urology conference and loved it. Each urology conference I went to was overwhelming to me to see medical professionals working hard to find answers and help for us.

I’ve seen treatment for IC come a very long way through the years. I could give you all sorts of details and information that I geek out over, but I will refrain. However, this very research has led me to different urologists through the years. My local urologist has been so kind and good to me. I’ve seen a handful of them who have been far from kind and helpful. This urologist has been so compassionate and helpful, but he doesn’t specialize in IC.

So I have driven out of town and out of state in order to seek out urologists who are leading experts. I was more motivated to do this after having children when I had a newfound desire to feel the best I could to be able to do more with them. The Women’s Urology Center at Beaumont Hospital in Michigan blew me away. I’ve been there a few times and had a couple of surgeries there and am thankful for their help and compassion.

Doing article research, though, also led me to interview people in related fields. In researching an article about Pelvic Congestion Syndrome, I connected with an Interventional Radiologist. During the interview he said to me, “I think I’ve found a cure for IC.” I was polite, but internally I scoffed. I’ve heard promises of cures for years and none of them ever panned out.

After the article released, he and I stayed in contact a little bit. I mentioned to him that the patients he was describing had histories a lot like mine. He sent me his patient questionnaire. I completed it, and he told me over the phone that he suspected I had blocked veins in my pelvis that were causing my symptoms. He told me he truly thought he could help me feel better. I remained skeptical. I was wary of getting my hopes up and being disappointed yet again.

Undergoing another procedure

The doctor I interviewed referred me to his colleague who sent me for imaging to determine if I had blocked pelvic veins. Lo and behold, I did. My left iliac vein was 70% blocked. His solution was an outpatient procedure to put in a stent. By that time, I’d had three major pelvic surgeries and four minor ones. What was one more? So in March of 2021, I spent my kids’ spring break out of town having an 11 mm stent inserted into my left iliac vein.

I didn’t feel any difference at first. Of course at first my pain was much worse, but it was overall the least painful recovery I’ve had for any procedure. Life returned to my version of normal. Then about 10 months in, I started noticing that I hadn’t been having my usual bladder symptoms for a while. A couple of months later, I tried going off of the bladder medication I had been taking since I was 23 (other than while nursing or pregnant). It was the same medication I took for about a year during middle school as well.

That was six months ago. I haven’t had any trouble since then. None. I am going to the bathroom the same amount of times as a “normal” person. I’m not even having to be as vigilant about the things I eat. (Foods and beverages often flare IC symptoms.)

Remission or healing?

So where does that leave me now? Am I in remission or am I healed? Honestly, I’m not sure. I just know that I feel well. I still have other chronic health issues that have come up through the years that cause me trouble and pain, but for the first time, my bladder isn’t at the top of the list. That is so incredibly significant in my life.

When my local urologist told me a couple of weeks ago that I don’t need to come back unless I start having problems, it began to really sink in to me that this is real. I called my mom on the way home from the appointment, and we both cried. I had made peace with the fact that my healing would be in heaven. But here I am on earth right now not having to struggle as much.

While I’m perhaps in a bit of shock, but I just praise and thank God. He is the One who led me to connect with the work I do and the doctors I’ve met. He has been with me every single step of the way.

Can my symptoms return? Yes. I’ve certainly learned that nothing with my health is a guarantee. But maybe my bladder symptoms really were caused by the lack of blood flow to my bladder. Having that blood flow restored and allowing time for my bladder to heal itself may be what worked for me in the end.

Long ago I had to learn to enjoy the good days without stressing about the bad days that were sure to come. (It’s an important lesson when you have a chronic illness.) Right now, I’m going to enjoy the good days. I’m going to praise God for taking care of me as He always has. I’m going to bask in His goodness and rejoice over finding relief I never expected to come.

For years, I’ve waited for this. I keep thinking it is too good to be true, but recently seeing my urologist and his reaction helped me understand even more that this is real — at least for now. God was with me in the wait and surprised me beyond what I could have hoped for so many years later. My heart is full of gratitude today!