Another Step Forward: Treating May-Thurner Syndrome

In the ongoing saga of my body’s quirks, I’ve got another diagnosis to share: May-Thurner Syndrome. If you’ve never heard of it, you’re not alone—it’s another rare one to add to the list. Essentially, it’s a condition where the left iliac vein is compressed by the right iliac artery, which can lead to poor blood flow and all sorts of fun (read: frustrating) symptoms. My vein is 83% compressed, though my body has created collateral veins to help bypass. You'd think this new highway system would be sufficient, but I guess it's not.

I discovered I had May-Thurner Syndrome during a venogram I underwent at UW Health in August 2024. Going into my MALS surgery, I knew there was a potential that MTS would also need to be addressed. But I was optimistic, hoping that MALS would alleviate several of my symptoms. As it turns out, MALS was just one piece of a much bigger puzzle.

The cramping, pain, fatigue, and dysautonomia have continued to wear me down, even post-surgery. Some days, I feel like my body is running on fumes. It’s frustrating because I so badly want to push forward, but my symptoms often pull me back. Since MTS affects the lower half of my body it's really cramping my desire to move around more.

What Lies Ahead

The good news is that there’s a treatment plan: I’ll be having a stent placed (12/5/24) to open up that compressed vein and (hopefully) restore proper blood flow. While it’s daunting to face another procedure, I feel a sense of relief knowing there’s a clear path forward.

The nurse informed me that some patients experience low back pain after stent placement, and given my history with previous procedures—like the coiling and embolizing of my ovarian veins—I’m cautiously optimistic. Those past experiences have made me a bit nervous, but I’m holding on to the hope that this will be a smoother recovery.

Other patients have shared that it can take about 6–8 weeks for their legs and pelvic pain to start feeling noticeably better. While I’m eager for relief, I’m also preparing myself for that adjustment period. One thing I’m still wondering about is why I experience pain in both legs, not just the left, where the vein is compressed. I don’t have a clear answer yet, but I hope this procedure will bring clarity and improvement.

How May-Thurner Syndrome Has Affected My Life

Living with May-Thurner has been one more layer of unpredictability. Some days, it feels like my legs weigh twice as much as they should. Walking around the house or trying to run errands can leave me drained, swollen, and in pain. Add that to the challenges of recovering from MALS surgery, and it’s been a tough balance between pushing myself and knowing when to rest.

Even something as simple as getting dressed has become complicated. Most clothes feel uncomfortable, especially anything that puts pressure on my lower abdomen or pelvis. Waistbands or restrictive fabrics are often unbearable. I’ve had to adjust my wardrobe to prioritize soft, non-restrictive materials that don’t aggravate my symptoms, which has been its own kind of frustration. 

It’s not just the physical symptoms, though. The mental toll is real. When every little thing feels harder than it should, it’s easy to get discouraged. I’ve questioned my progress, doubted my strength, and felt like my body is working against me.

But if there’s one thing I’ve learned through this journey, it’s that healing doesn’t happen all at once. It’s a process—one that requires patience, grace, and a lot of stubborn determination.

Looking Ahead

The stent is a game-changer. Once it’s in place, the hope is that my blood flow will improve, and with it, so will my energy levels and mobility. I’ve been dreaming about the simple things—like taking a walk without needing to stop and rest or standing at the kitchen counter without feeling like my legs are made of lead and someone’s stabbing me in my abdomen and pelvis.

Recovery from the stent placement will take some time, but I’m holding on to the possibilities:

• Less pain and swelling 

• Ability to wear any type of clothing

• Cooking more meals

• More energy to focus on my family and daily life

• A chance to fully engage in my recovery from MALS

Most of all, I’m hopeful that this will be another step toward feeling like myself again.

Moving Forward

I’ve come to accept that my health journey is going to have twists and turns. Some days are harder than others, and it’s okay to feel frustrated. But I’m also grateful for the tools, treatments, and support I have to keep moving forward.

To everyone who’s been cheering me on through this—thank you. Your encouragement means more than you know. This next step might be challenging, but I’m ready to take it, one day at a time.

Here’s to better blood flow, brighter days, and legs that finally feel like they’re on my side!

MALS Post-Surgery: Quick 2-Month Update

Two months post-surgery for Median Arcuate Ligament Syndrome (MALS), I’m happy to report some significant improvements. The most notable milestone: no more MALS pain! It feels incredible to have that particular weight lifted after such a long struggle.

Eating has also improved. I’m still adjusting to my appetite and find that small portions throughout the day work best for me. While I don’t feel back to normal in this area, it’s a big step forward from where I was before surgery.

That said, recovery hasn’t been without its challenges. I continue to deal with rib pain and flank pain, which my doctor attributes to possible lingering inflammation. Only time will tell how much of that resolves as I continue healing. Additionally, my incision pain flares up if I push myself too hard, but as long as I pace myself, I’m managing well overall.

I’ve also started physical therapy as part of my recovery. Right now, we’re focusing on improving my range of motion, stretching, and building strength. It’s been helpful to have guidance in navigating this stage of healing and ensuring I’m progressing safely.

This recovery journey has been filled with ups and downs, but I’m grateful for the progress I’ve made. Healing takes time, and I’m learning to give myself the patience and grace I need to keep moving forward.