Guest Feature: Jim’s Story


Vascular Compression Syndromes:

A Likely Cause of Chronic Fatigue Syndrome

Written by: Jim, Colorado

One of the most frustrating things I have read since getting diagnosed with May-Thurner Syndrome (MTS) is that if you don’t develop Blood Clots or Deep Vein Thrombosis (DVT) with this condition, you are most likely asymptomatic. Unfortunately, very few doctors are aware of the many symptoms that MTS can cause, especially without blood clots or DVTs. Since my personal experience with May-Thurner Syndrome is vastly different than most stories I’ve read about this condition, I would like to share my story about how I finally got diagnosed with MTS and the many seemingly unknown problems it can cause.

May-Thurner syndrome is an anatomical variant that can lead to vein compression and, in a small percentage of people, blood clots and DVTs. Since I never developed blood clots with this condition, none of my doctors ever thought MTS could be the cause of so many of the problems – most of which I’ve had for the majority of my life, such as debilitating fatigue. After recently getting diagnosed and treated for this condition, here are some of the problems that MTS can cause that are not widely known. Many of my own problems started around age 13, although looking back there were definitely signs of this condition even early than that. Some symptoms that many people first experience when developing blood clots with MTS is anxiety and fatigue. I’ve had anxiety, especially social anxiety, from an early age. I was extremely shy and insecure as a kid. Then, at age 13, I started experiencing extreme fatigue and, shortly afterward, depression. This is when I probably should have begun developing blood clots as commonly associated with this condition, but I’ve learned that most people with MTS never will and many will never even know that they have this condition. From there I would go on to develop chronic fatigue, which would negatively impact my life for the next 25 years.

May-Thurner syndrome is a poorly understood and rarely diagnosed condition. It seems to me that almost everything that is known about MTS is incorrect. For instance, most websites will say that it’s a rare condition that’s commonly diagnosed in women who are between 20 and 40 years old and that it’s not a hereditary condition. However, it’s actually an anatomical variant that is estimated to be found in 20-25% of the population, possibly even much higher. About half of these people could also have at least some compression of the iliac vein and be experiencing symptoms as a result of this condition. MTS occurs when the spine begins pressing down on this very large vein, blocking normal blood flow. It can also occur at almost any age. Since women tend to have a more pronounced lordosis of the spine, they are approximately 4 times more likely than men to receive a diagnosis of MTS. It would also seem that MTS is more than likely hereditary because it can be caused, in part, by the shape of a person’s spine.

After having a stent place for May-Thurner syndrome, I can say that MTS has undoubtedly been the root cause of my anxiety and unexplained chronic fatigue or excessive daytime sleepiness (or whatever you want to call it) that I’ve had for more the past 25 years. I don’t know of many doctors that will tell you that May-Thurner syndrome can cause chronic fatigue but the doctor that diagnosed me knows it can cause this extreme fatigue. My doctor also told me that MTS is a condition that is usually diagnosed in pregnant women due to rapid weight gain that causes the compression of the iliac vein and, sometimes, DVTs. So, for a healthy male with no blood clots, this is probably the last condition most doctors would look for — and that’s the problem that I’ve discovered about this condition. From my experience, I can say that May-Thurner syndrome can absolutely cause chronic fatigue syndrome. So along with anxiety, chronic fatigue, and depression, MTS can also cause cognitive dysfunction as well. I’ve had attention deficit disorder, confusion, and memory problems since early childhood. It’s likely that I was born with, or developed, significant compression of my left iliac vein early on in my life, thus causing many of these symptoms. The problem that MTS is that it can be especially devastating for kids and teenagers who are dealing with these symptoms but are not quite able to fit in with their other “normal” friends, so an inability to excel or succeed at work or school due to poor concentration and fatigue could be an indication of MTS, much like CFS.

When my problems began getting worse last year at the age of 38, I was determined to figure out what was causing the unexplained, extreme fatigue that I’ve had for so long.  My symptoms up until this point could only be described as mild narcolepsy due to the excessive daytime sleepiness and hypnagogic hallucinations with sleep paralysis that I would occasionally experience. As someone with narcolepsy once said, “one of the first places I go to when I get in a car is to sleep” and I could sleep for days when riding in a car! (Incidentally, 13 and 38 are the exact ages people are usually diagnosed with narcolepsy – a diagnosis I was trying to get a year earlier than my MTS diagnosis). I had every sign and symptom of narcolepsy except for cataplexy, although MTS could very well cause this too since it causes weakness in the legs as well. I believe that May-Thurner syndrome could very likely cause sleep associated disorders, including narcolepsy.

After a long and stressful period in my life, my anxiety began to get much worse and I started experiencing brain fog and memory loss. I also began having dizzy spells, sort of like the entire room was spinning, and I was having balance issues as well. For instance, I would be walking along and then suddenly just start leaning to my left side. One day, when I was out walking with my daughter, I ran right into the door of a store we were entering. At the time, it was actually pretty funny – we both had a good laugh about that one. After going to see over a dozen different doctors during the following 6 months, I was not any closer to finding the cause of my fatigue. I had all kinds of tests, include abdominal ultrasounds and magnetic resonance imaging (MRI) of the brain, but the only thing doctors found was that I had left-sided varicocele veins. Apparently, a doctor had mentioned that I had these to my parents around the age of 13. I was having a dull/ache and pain on the left side of my groin at the time, so that made more sense. Still, even after all of this, doctors kept telling me that I was a healthy male and that I had nothing to worry about, even though I felt like I was dying all the time. After a couple of months of feeling miserable, I decided to have a varicocele embolization to see if this would help any of my problems since I read that they could also cause fatigue and low testosterone.

When the interventional radiologist performed the embolization, it turned out to be one of the best/worst decisions I’ve ever made. What I didn’t know at the time, however, was that this procedure redirects blood flow out through the left internal and external iliac veins, causing an increase in blood flow through these veins. My varicocele veins actually started getting worse after this and the brain fog, which was starting to slowly get better, began getting much worse. Breathing also became very difficult and I developed worsening anxiety, including an impending sense of doom for some reason. My hips and legs would hurt when either sitting or standing for any length of time. Both legs felt like they weighed 300lbs each and were very weak. I would just sit around and wonder about how I could keep going, especially with the way things had been going for such a long time. It took me awhile but I finally went back to the doctor that performed my embolization and told him about all the problems I’d been having since then. That’s when he told me that I probably have a condition called May-Thurner Syndrome. After searching MTS and fatigue online, I found a website from a vein clinic that talked about how MTS can cause symptoms like anxiety, fatigue, depression, and exercise intolerance. The website also stated that those with a 70% or more compression of the left iliac vein can cause leg pain and/or swelling, pelvic pain, pain during intercourse (dyspareunia), pelvic pain after intercourse (post-coital pain), lower back pain, and urinary bladder discomfort. This description almost describes nearly all of the symptoms I had been having exactly – I couldn’t believe it! At this point, I knew that I had finally discovered the cause of all the problems that I had been having for all these years.

After a pelvic venogram confirmed that I actually had MTS, with about 70% compression of the left iliac vein, he chose to place a stent in the vein to allow for proper blood to flow through. I wasn’t sure what to expect next, so I left the hospital and went home to relax. That night, I started getting the worst lower back pain and I felt like I was half-paralyzed. I remember thinking to myself that it was just my luck and I had somehow managed to make my problems even worse than they were before the stent placement. During the middle of the night, however, the pain slowly began to disappear and I felt a little more relieved. The only way I can describe how I felt when I woke up the next day is that it felt as if I had been placed in a completely different body – I felt 20-years younger overnight; I was breathing so much better and could finally take a deep breath; the terrible anxiety and brain fog were gone; my legs felt so much lighter that I felt like I was a balloon and I could almost fly away at any time, and the extreme fatigue was also starting to fade as well. Additionally, I had the strangest sensations all over my body as blood was probably flowing normally (through my whole body) for the first time in my life. Every ache and pain in my body were now gone, although it took about 2 months for my sleep patterns to return to normal again. I finally started feeling like my old self – only a lot less fatigued.

It was around this time that I met Nikki (the Undiagnosed Warrior), who had also been diagnosed with May-Thurner syndrome and pelvic congestion syndrome, as well as two other vascular compress syndromes: Nutcracker syndrome (NCS) and superior mesenteric artery syndrome (SMAS). It is also when I first learned about NCS, although I shortly discovered that it was also a known cause of CFS and a very similar condition to MTS. Nikki was the first person I’ve ever been able to talk to that knows about the many problems that MTS can cause for those affected by it. In fact, our running joke with one another is “You know what causes that right?” – “May-Thurner Syndrome!!!” LOL.

My hope in sharing my story is that maybe someday it will help someone else receive a diagnosis, instead of suffering unknowingly with this miserable condition. It’s amazing that it has taken over 25 years for someone to figure out that I most likely had MTS all my life and it shouldn’t be that difficult. I wish one of the many doctors I saw along the way would have known about the many problems and symptoms that May-Thurner Syndrome can cause, especially in those who haven’t develop blood clots as expected. The good news is that doctors have been stenting for MTS for the past 20 years and if you do have this condition, a simple stenting procedure could give you great relief from your symptoms – I know it did for me. [Note: It is imperative that your doctor or surgeon check for other vascular compressions syndromes prior to agreeing to stent placement or pelvic embolization as a treatment because it can have the potential to increase pain and symptoms, rather than relieve them, especially when other vascular compression syndromes are present. Please consult your physician to find out more information]. Thank you for reading my story!

Jim Johns Photo for Article Submission

Contributor Information: Jim is an active member of the Undiagnosed Warrior Team and a moderator of the Undiagnosed Warrior Support Group. He advocates for the Undiagnosed by educating both patients and professionals about vascular compression syndromes, particularly on May-Thurner Syndrome and the random symptoms that the condition can cause.

20 thoughts on “ Guest Feature: Jim’s Story

  1. drkarindrummond says:

    Thank you for sharing!!! If I have patients with low back pain that does not respond as expected, vascular compression syndromes are on my radar. I will be talking about pelvic congestion syndrome in my “Combat Low Back Pain” as a possible cause of chronic low back pain. I will also mention the other compression syndromes, to help bring awareness. I feel compression syndromes are on the rise because we all sit too much. Our bodies need to move to aid the drainage of our blood and lymphatic vessels. Thanks again for sharing! – Karin, D.C.

    Liked by 1 person

    • The Undiagnosed Warrior says:

      I’ll keep an eye out for your article. There’s definitely not enough awareness on vascular compression syndromes and all the random symptoms and comorbidities commonly associated with these conditions. There’s also not much research, which is part of the bigger problem.

      Liked by 1 person

      • drkarindrummond says:

        The good news is with electronic records, there is a researchable data that is helping doctors better understand conditions, morbidity rates, etc. If you want, I am happy to send you a copy of my “Combat Low Back Pain” book. I would love to hear what you think about it. It is aimed arm the patient with knowledge, so they better understand their bodies, what to do if they have low back pain, and what to ask their doctors. If you are interested, you can contact me through


  2. Allison Marie Broschart says:

    I am so glad I came across this story. I am a 21-year old female that was diagnosed with varicose vein disease while in France during a semester abroad in the fall of 2016. All was well and I had a minor procedure to close the vein affected in my left leg. Six months went by and I saw no reduction in my symptoms (ie. leg swelling, pain in the leg, etc.). My doctor (probably because of my age and sex) immediately referred me to a vascular surgeon under the assumption that I had MTS. I just went to my appointment today and was diagnosed with MTS, NCS, and something else having to do with my ovary arteries. My doctors have always been reluctant to tell me my chronic fatigue has to do with my vascular issues, but it makes so much sense to me. My boyfriend often makes comments about my “aches and pains” and how tired I always am. I am having surgery done in March and hope for a good outcome as well! Thank you so much for sharing your story so we don’t feel so alone.

    Liked by 1 person

  3. The Undiagnosed Warrior says:

    Hi Allison! Glad you found it too. Like you and Jim, I also have MTS, as well as NCS, SMAS, and pelvic congestion syndrome. These conditions really do wreak havoc on our bodies in so many ways. What surgery are you having done? I really hope it goes well for you and relieves your symptoms 💜💚💙


  4. writing, writing, words words words. says:

    My mom was diagnosed with pelvic congestion syndrome too late, and died. She had top notch insurance, but her PCP wasn’t an M.D., so didn’t have hospital privileges. She and my father spent so many useless hours in the E.R. but finally it was diagnosed. She couldn’t get an appointment to see a specialist for two FUCKING MONTHS. She was also declining mentally, from dementia it was thought, but it turned out to be TIAs. She died in her sleep two days before her appointment. Or my father put her out of her misery, I’m not certain – I left to travel back home and the next day he texted (?!) me to say she had died in her sleep the night I had left (he would have had to sell his Miata, and mortgage his home to be able to pay for her care at a long-term facility, which she needed).

    He refused to let them do an autopsy, insisting her PCP sign off on her without one. He got chummy with the coroner who threatened to fine her PCP is she continued to refuse to sigh off. Because hey – if one man says it’s the truth, it is, and when two men say it it’s a fact.

    Thanks for letting me vent.


    Liked by 1 person

    • The Undiagnosed Warrior says:

      That’s incredibly sad that your mom went through all that mess before her passing. It’s unbelievable how the medical community is okay with leaving us all in pain and with minimal answers as to why. I’m also very sorry that you weren’t able to make it home in time to say goodbye to her. I know how hard that is because I also lost my mother unexpectedly and only made it back home with enough time to know that she was gone – less than a few minutes before the ambulance had arrived. My father also didn’t have an autopsy done either, even though she passed only a few weeks after visiting with our family doctor (That’s a whole different story), so I do understand a little bit about where you are coming from. It’s something that you never really get over or heal from, so please feel free to vent any time that you need 💜 I really appreciate you sharing your mom’s experience. I’ll make sure to let Jim know that you reached out as well.

      Liked by 1 person

      • writing, writing, words words words. says:

        Hi, Thank you Nikki, for responding and for sharing how it went for you, arriving mere minutes before she passed. That must have been heartbreaking, I’m so sorry.
        I feel like I should edit the post to tone down the comment about men; one can hardly dislike half of the people on the planet, it’s took much work, any. It’s just – I disagreed with my father and brother about the care and meds my mother should be taking, about my father getting a wheel chair for her (which makes a person lose serious muscle mass), etc. My informed opinions were vetoed by two males that I am (obviously)still irritated and sad about. Things could have been done to save her (I believe), but they weren’t.
        Thanks again, Nikki, for sharing. It does my heart good. I appreciate it. xo

        Liked by 1 person

      • The Undiagnosed Warrior says:

        It’s completely understandable why you would feel that way and it’s easy to transfer those feeling to others, even if they had no part in the way things ended. No need to edit the comment because I’m sure everyone can understand where those feelings are coming from 💜. While the situation with your mom is obviously different than most, the long-term care of a loved one or family member is difficult for everyone involved, particularly when there is disagreement in what could (or could not) have been done to help. It’s okay to feel sad, angry, depressed, and so forth – those emotions are legitimate given the situation, so you don’t need to hide or repress them to make everybody else feel comfortable. I just hope that you can also find some peace in her death so that you too can have some peace in your mind someday as well, although I don’t think we ever really stop grieving over these kinds of things. It just changes us too much at the core.


  5. Ana Putiri says:

    Thank you for posting this article. My daughter is 17 and diagnosed with May-Thurner a year ago. 90% stenosis but collateral veins doing the work and two surgeons and one pediatric interventional radiologist agreed no to stent due to her complex case. She has the opposite of clotting and the hematologist and gynecologist finally are getting her bleeding disorder under control. She has two different connective tissue disorders She is dealing with chronic fatigue and anxiety! I will show this article to her Dysautonomic dysfunction neurologist!

    Liked by 1 person

    • The Undiagnosed Warrior says:

      Sorry to hear that your daughter is dealing with this as well. Like Jim, I also have May-Thurner, as well as Nutcracker Syndrome, SMA Syndrome, Pelvic Congestion, EDS, Autoimmune Dysautonomia/POTS, and MCAD. These conditions all seem to go together in groups. Hope you can get the help your daughter needs so that she can feel better. It’s hard being so young and so sick 💙💚💜


  6. Di Brown says:

    Holy cow – thanks! For three years I have been dogging my doc about a host of ‘nonspecific’ things – fatigue, “mysterious” weight gain (putting out 10-20% more calories than taking in but gaining weight – evenly across my whole body) without knowing what was up. Took a plane trip and came home with two swollen ankles, suddenly folks were interested. 😉 healthy organs, no clot – still don’t know why my right ankle swelled up – but the subsequent exams showed MTS. They are scheduling a stent and I cam looking for ‘more info’ – and was amazed to read so many ‘other things’ here that sound like me. Had to look up ‘exercise intolerance’ – and then compare it to a lifetime of “not knowing what runner’s high is, cuz all i ever get is tired” (even at peak, maxing Army PT test run, I’d cross the finish line and shoulder roll into the grass to catch my breath) and now I am wondering if improving the bloodflow might also ease some of the effects of PTSD…
    Thanks so much for sharing ‘stuff so trivial and ancillary that doctors don’t think to track or mention it’ – but which make a huge difference when you stare at it and think “me too!”

    Liked by 1 person

    • The Undiagnosed Warrior says:

      So sorry your dealing with this stuff too. Both Jim and I have been there ourselves too many times to count (I forwarded this message to him as well). Definitely do as much research as you can about these conditions. Another recommendation is not to rush into the first surgical optioned offered – get second and third opinions. It’s far too common that patients rush into surgery because they want relief so bad (and who can blame them?) and they end up feeling worse. Ask your doctors to check you for other vascular compression syndromes (e.g., Nutcracker Syndrome, Pelvic Congestion, SMAS, MALS, etc.) before you decide on a stent (or any other surgical intervention for that matter). The reason for this is that it could cause increased pressure on the other compressions if you have them (most of us have more than one) and stenting, for example, could potentially cause even more pain than you have right now. If you do have more than one vascular compression, see if they can both be treated at the same time if possible. Good luck and keep us updated on how it goes!


      • Di Brown says:

        Thanks for the good advice! Doc actually started with pelvic congestion – but we found a pretty definitive cause. (Something about the three huge fibroids stretching my uterus to the size of a 4-5 month pregnancy seems to be creating pressure on everything in the region, as well as causing anemia. Imagine that….). I am fortunate that I didn’t have to experience a DVT in order to figure it out, but it *is likely there is some scarring/wearing on the iliac from the pressure (second opinion agrees on that). Stenting seemed like the least-severe ‘safe’ option – but if there are other questions I should be asking or options I should know to ask about I welcome advice/input!

        Liked by 1 person

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