Show Notes
Today’s episode is with Dr Alexis Cutchins and we’re talking all about pelvic congestion syndrome (or pelvic venous disease as it’s also known as) and its connection to endometriosis, POTS, MCAS and Hypermobility Spectrum Disorders. Dr Cutchins is a board certified cardiologist with a passion for caring for patients with Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome and Hypermobility Spectrum Disorders. After 13 years as Assistant Professor of Medicine in the division of Cardiology at Emory University she became founder and CEO of Cutchins Cardiovascular Medicine in New York City. She has been recognized globally for her clinical excellence in the care and management of patients with complex chronic illness, specifically, POTS, Dysautonomia and Long COVID. She is also known for her research contributions in this area specifically related to POTS and its comorbid conditions highlighting the role of Pelvic Venous Disease in Orthostatic Intolerance. She serves as a board member for the International Society for Mast Cell Activation Syndromes (ISMCAS), Standing Up To POTS, and SAFIRE (Spencer’s Association For Interventional Research & Education) a nonprofit organisation advocating for care and research for underdiagnosed syndromes such as POTS, Pelvic Venous Disease and others. Pelvic congestion syndrome can manifest as symptoms very similar to endo, so it’s often not investigated in our demographic, despite it being very common in our community. So today Dr Cutchins is being our advocate and sharing the symptoms, how to get diagnosed and what tests to ask for, and the treatment options available to us. If you have daily chronic pelvic pain, or leg pain, or you suspect or know you have POTS, HSD or hEDS or MCAS, this is worth a listen.
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More from This EndoLife
A week or two back I did an episode on the small intestine spasm seen in 100% of endo participants in a study on endometriosis and SIBO.(1) Last week I shared about this observation on Instagram and the post went wild. It had 100,000 views, hundreds of comments, thousands of saves and so many of you wrote to me to say that you get a spasm like pain in your intestines over night. I am going to do some more digging, as I’ve never come across more research looking into this issue since that study, which was in 1998. I could have certainly missed it, so I’ll look again, but in the meantime, it’s clear something is going on and many of you are suffering. Now, I am going to do another episode on other intestinal spasms that could also be happening in the night, because I think some of us are having different experiences, but today I want to do a short episode on the main motility tests we can get for the small intestines that I advise my clients to discuss with their GI doctor.
When I am working with endo clients on their SIBO, I always start the discussions not by diving into the protocol options, but by setting expectations and giving some cautionary warnings. This is so important, because SIBO is not easy to treat, but also, if you misunderstand your test results as you go through the protocol, you may give up or change protocols when in fact, you should keep going. Often I have people come to me and tell me they tried one round of herbs and their levels went up, or they tried antibiotics and only one gas came down whilst the other went up, and so on. So, today, I want to give you a very brief insight into some of the gas patterns you can expect to see when you’re going through SIBO treatment, so that if you’re doing this on your own, or you’re doing it with the help of your doctor but perhaps they are not as versed in SIBO as you’d like, you know what to do when you see these patterns.
This week we’re travelling again, heading over to the Isle of Wight, and we have a lot of packing to do, so this week is a real bite sized episode, but an important one. You may remember me talking about a study showing 80% of participants with endometriosis also had SIBO. But what many people don’t know, and what I think doesn’t get enough focus, is that this study also found 100% of participants had a dysfunction of their small intestine motility.
Recently, there’s been some awful articles going around about the rise of the chronic illness community and how we’re lying about how ill we are, and that we’re encouraging others to believe they are also ill. So, today, if you’re questioning how you’re feeling, worried it’s all in your head, or fearful you won’t be believed, I wanted to give you some research on why you your health may have been declining in recent years, or why you now have three or four extra chronic conditions added on top of your endo. It’s not all in your head, and you’re not making it up.
Today I want to talk about Ehlers-Danlos syndrome and the hypermobility spectrum disorders, and how they may be contributing to your endo belly, IBS and/or SIBO