May Thurner
On this post I will keep adding information regarding May Thurner and Pelvic congestion as I have more to share about my journey.
It is RARE but what I am learning is that you have experienced Endometriosis, Ehlers Danlos, POTS and MCAS there seems to be a much higher chance of this occurring.
How I figured it out
I have Instagram to thank for figuring out that May Thurner was part of the equation for me. Katie Edmonds (Instagram) posted an article written by Kimberly Kushner (Home) Here is a link to that article (Venous Disorders, Pelvic Congestion Syndrome, and Endometriosis: A Connection We Need to Talk About — Heal Endo)
In the fall of 2025, I had an occurrence in my pelvis where the pressure got so bad that I couldn’t stand without assistance and I was in so much pain (this had happened before but not this bad or for this long). I had researched the reasons for this for years but was still without answers. Shortly after this occurrence I found the article above, and the pieces just started to all fall together. I was able to have a consultation with Kimberly and reached out to my amazing Pelvic Floor Pt Michele (Align PT| Expert Pelvic Physical Therapy| Longmont, CO) and was fortunate enough to be living about 20 minutes from an awesome vascular specialist Dr Brooke Spencer. Once I got my appointment with them, they were able to see what looked like iliac vein compression in my MRI from my excision surgery two years ago. This moment was so validating. I had been describing a sensation of feeling like there was ball in front of my spine at L5 S1 and turns out there was!
How it showed up in my body
These were exacerbated after receiving a cardiac ablation for Wolf Parkinsons White Syndrome and the got even worse after excision surgery for stage 4 endometriosis (the excision surgery helped with Endo immensely)
- Heaviness in my legs and fluid retention
- More visible veins
- Pain in legs
- More tension in my left leg
- Pressure in my pelvis
- Pain in my low back and pelvis
- Chest pain
- Not able to stand for long period of time or walk without feeling extremely fatigued
- Repetitive motions with my arms or lift something would crash my body and make it hard to stand ( was tested for myasthenia gravis just in case but that wasn’t it)
Resources for vascular specialists that understand the complexity of Vascular plus EDS/ENDO/POTS/MCAS
Interventional Radiology in Denver, CO | MIPS Center
Procedure:
The next step was to do a Venogram and hopefully get a stent. They only do the stent if it is at least 50% compressed.
In my case it ended up being 83% compressed!
What I noticed right away was that when I got off the bed to go put my own clothes back on, I didn’t have any POTS symptoms, and my balance was so much better without having to try.
Day 2 Observations:
Things that I’m noticing that already feel better and I hope stay and just continue to improve are :
✨ I can walk upstairs without feeling weak or my heart racing
✨ I can stand at the end of the day long enough to make some food without needing to sit in a chair. I had the chair just in case and did rest only because I’m trying to be good but not because I felt like I had to
✨ I have so much less pain in my abdomen and my digestion feels much better
✨ My legs feel way less painful and less inflamed and I already have less fluid retention
✨ I have so much more strength in my arms and upper body and it’s easier to sit
Second Week:
This was a harder week because the longer I was taking the blood thinners the worse I started to feel. The first one they had me try was Eliquis and it didn’t agree with me. I just kept feeling woozy. I then transitioned to Pradaxa and the transition was rough, like having the flu. It only lasted a few days fortunately. I am feeling a lot better on the new stuff, not a 100% yet but much better.
To be continued…..