It’s been a while since I provided a formal update on here! Where to begin?
So, it turns out that I also have Pelvic Congestion Syndrome which is possibly being caused by May-Thurner Syndrome. Both of these syndromes are a direct result of having Ehlers-Danlos Syndrome. This is what has been causing my intense pelvic pain. Basically, May-Thurner is iliac vein compression. It compresses the venous outflow tract of the left lower extremity which can cause swelling, pain or blood clots. Pelvic Congestion Syndrome happens when blood starts to build up inside the veins in the pelvic region which can happen when there is a compression issue. The veins can enlarge and change shape, like varicose veins. I have included links at the below of this post if you’re interested in learning more about Pelvic Congestion Syndrome as well as May-Thurner Syndrome. I met with an Interventional Radiologist about both conditions and she explained a Venogram would need to be conducted in order to try to rectify these issues. However, it involves radiation exposure, and right now I am not trying to expose myself to more radiation. It may be something I will do in the future.
My next stop is Rheumatology on Monday to see if there is any underlying autoimmune condition contributing to my POTS. I have to follow-up with my Autonomic Specialist next week as well, as he wants to conduct a sensory study on me to see if I am experiencing neuropathy issues.
In other news, there is new research showing that POTS could be its own autoimmune condition. Researchers have uncovered auto-antibodies in POTS patients that could ultimately assist with diagnosing and treating POTS more effectively moving forward. More research needs to be conducted, but it means we are moving in the right direction! Here’s an article about the auto-antibodies found: https://www.technologynetworks.com/immunology/news/blood-circulation-disorder-could-be-an-autoimmune-disease-323953
That being said, I have noticed my outlook has shifted quite a bit recently regarding this entire journey of mine. I used to be so driven to find answers and figure out why my nervous system just decided to go haywire one day. I have gained a lot more insight and knowledge this year than last, especially with finding out that I have a genetic disorder. However, I still don’t know what actually triggered my Dysautonomia, and I think after a year and a half of searching, I am actually okay with never knowing. I am honestly tired of the cat and mouse chase – it’s been exhausting to say the least. Though I may have more ER visits and doctor visits to come, I feel I have gone so far down the rabbit hole at this point that pretty soon I will no longer be able to see the light from the top. I will continue with my core care team and I obviously will continue to take care of myself as best I can, but I may actually never know why POTS entered my life.
Thus, my goals for the remainder of the year and moving forward are:
- Focus on a positive mindset.
- Continue eating whole foods and keep incorporating more whole foods into my diet.
- Exercise: Go on bike rides, walks and just get moving!
- Get out in nature more often.
- Practice daily gratitude for the blessings I have in my life.
- Work on improving overall mind, body and spirit.
- Travel more.
- Live life each day as it comes. Practice staying in the present!
As always, thanks for reading! ❤
Here are those articles:
May-Thurner Syndome: https://my.clevelandclinic.org/health/diseases/17213-may-thurner-syndrome
Pelvic Congestion Syndrome: https://www.cedars-sinai.org/health-library/diseases-and-conditions/p/pelvic-congestion-syndrome.html