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.

10 Ways That Living with a Chronic Illness is Like Training for the Olympics

Update 8/18/2016 – This article was featured on  TheMighty.com website on August 9, 2016, which is such a huge honor. Thank you all for your continued love and support.

If you’d like to read the shorter, edited version of this post on The Mighty’s Website, please visit https://themighty.com/2016/08/how-training-for-olympics-is-like-having-a-chronic-illness/


As a patient who has not only been diagnosed with multiple rare forms of chronic illness and as a former athlete that competed on the national level in swimming,  I feel that I offer a unique perspective as to how some aspects of day-to-day life are quite similar between the polar opposites of having a chronic illness and training to compete in the Olympics. Here are some of the

Top 10 Ways That Living with a Chronic Illness

is Like Training for the Olympics:

10. You’re friends and family don’t understand why you never hang out with them. 

Obviously, training for the Olympics requires a great deal of  time and dedication. In an effort to become one of the top athletes in the country,  sacrifices have to be made and one of the first things to go is generally your social life. Spending months at a time at training camps or traveling for competitions takes you away from your family and most days it was far too tiring to even think about going out and socializing with my friends, let alone actually doing it.

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Now that I have a chronic illness, there are days when I can barely walk to the bathroom by myself, let alone take a shower. I’m lucky if I make all of my scheduled doctor appointments or medical tests even though I have assistance in getting there since I can no longer drive. Having a social life on top of it – that’s honestly asking too much of myself. The majority of people can’t understand how truly difficult it is to do the basic things that many people take for granted, such as going to the grocery store or cooking dinner. When you become sick while still young, though, the discrepancies between living a so-called normal life and that of “the sick life” are far more dramatic in comparison. Friends just simply don’t have the capacity to comprehend why their formerly “fun friend” is suddenly stuck at home on the couch. As they say – you don’t really get it until you get it.

9. You’re always tired, regardless of how much you sleep. 

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When you’re working your body hard, either to make your Olympic dreams come true or to merely make it through the day, fatigue seems to have a tendency continually build up to the point where you don’t know what it’s like to NOT feel tired anymore. No matter how much you sleep – it could be 8 hours, 12 hours, or 2 hours – it all feels the same.

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Professional athletes are likely to suffer from a condition called Overtraining syndrome (OTS) if they work themselves too hard over a long period of time. As Kreher & Schwartz (2012) explain, “athletes train to increase performance. Performance increases are achieved through increased training loads. Increased loads are tolerated only through interspersed periods of rest and recovery—training periodization. Overreaching is considered an accumulation of training load that leads to performance decrements requiring days to weeks for recovery. Overreaching followed by appropriate rest can ultimately lead to performance increases. However, if overreaching is extreme and combined with an additional stressor, overtraining syndrome (OTS) may result. OTS may be caused by systemic inflammation and subsequent effects on the central nervous system, including depressed mood, central fatigue, and resultant neurohormonal changes” (p. 128). However, depending on the pathophysiology and etiology of the condition, a number of treatment options are available, including hormone therapy, cognitive or physical therapies, stress management, and prolonged periods of rest.

Prolonged fatigue in chronic illness generally comes from the medical condition itself but other factors that come along with  the illness can also influence a person’s physical, emotional, and social lifestyle in a way the creates additional fatigue as well. For example, sleep patterns can be affected by conditions like dysautonomia or autoimmune disease. While there are some strategies available for managing the fatigue that result from the various conditions of having a chronic illness or pain, once again it really just depends on the type of condition that is causing it. Delegating duties to friends or family members, practicing stress-reducing technique or and good sleep behaviors, and taking a lot of breaks throughout the day can help to a degree. In most cases, though, chronic feelings of fatigue cannot be cured or treated unless  the underlying condition is cured or goes into remission.

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8. You’re usually awake to see the sunrise.

Olympians often start training in the early hours of the morning, long before the rest of the world is even awake.

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Those with a chronic illness are often awake this early in the morning as well – mostly because they haven’t gone to bed yet due to high levels of pain or because they spent most of the evening lying on the bathroom floor.

7. You’ve become really good at hiding how you  really feel.

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In order to be seen as a “good sport”, athletes sometimes have to cover their disappointment in their performance by shaking the hands of their opponent.

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Those with chronic conditions tend to hide their illness by responding that they’re “fine” while they keep a smile on their face, even though they may feel like they’re dying on the inside.

6. It’s just like having a full-time job but without the weekly paycheck.

Potential Olympians train both day and night to achieve their dreams of competing in the Olympics. When I was in training, I’d have practice in the morning before school, strength and/or weight training immediately after school, and then practice again in the evening before I went home to do homework and rush off to bed. Also, I either went to practice or to a competition on both days of the weekend as well.

As a chronic illness patient, I spend most of my time calling doctors offices, faxing recordings, fighting insurance companies, researching treatment options, and recovering from various surgeries or treatments that are often difficult in and themselves. I also spend a lot of time going from one appointment to another, shuffling from one specialist to another, going through this medical test or that treatment plan, one hospital visit after another hospital – it’s exhausting.

5. You make plans way ahead of time.

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When you’re training for the Olympics, everything is planned months ahead of time – sometimes even years in advance. This includes everything from what competitions you’ll compete in and the travel plans to go to such events to the training schedule you follow throughout the year.

Making plans when you have a chronic illness also requires a lot of preparation. As a rule, I try not to commit to anything unless I absolutely have to. On those rare occasions that I do make plans to hang out with  friends or family, every detail is planned out way ahead of time and every potential or possibility needs to be accounted for. However, considering that most of my symptoms can change substantially in the blink of an eye, most efforts to plan anything are basically futile. More often than not, I have to cancel these plans at the last-minute anyways – leaving me to feel guilty or worthless because of my illness.

4. Proper nutrition and hydration are imperative to your ability to function.

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One of the most important elements of training for the Olympics is good nutrition. If you want to reach your peak performance, it’s import to follow a well-balanced diet. It’s  also important to stay hydrated both before and after practice so that you don’t become ill or injured simply by losing important nutrient and electrolytes from pushing your body passed its  physical limitations. According to an article in Men’s Fitness Magazine (2014), “for Olympic-level performance and off-the-chart energy, you must eat properly including eating a breakfast of complex carbohydrates and lean protein, then eat again every 3-4 hours and within 90 minutes of working out. Consume half your bodyweight in fluid ounces of pure water and if exercising intensely or for long duration, consume a sports-drink to replenish electrolytes” (para. 2).

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Similarly, some of my diagnosed conditions require extreme effort and dedication to dietary guidelines in order to thrive. For instance, my vascular surgeon identified that has malnutrition after years of not really eating due to a combination of pain and early satiety caused by a rare condition called Superior Mesenteric Artery Syndrome (or SMA Syndrome). In order to survive the life-saving surgery that I need in the upcoming months, I was sent to a dietician to bring up my nutritional blood screens so that I could have the surgery to fix the compression of my SMA, as well as the other three rare vascular compression syndromes I have as well, including Nutcracker Syndrome, May-Thurner Syndrome, and Pelvic Congestion Syndrome. However, because the third portion of my duodenum is being compressed by the SMA, food becomes obstructed as it tries to move into my small intestines.Therefore, the dietician had to be somewhat creative in prescribing a diet of foods that could move past the compression. Currently, my daily dietary regimen consists of:

  • Multiple “shots” of either a protein shake or Carnation Breakfast Essentials (I do “shots” because I can’t drink 8 to 16 oz a day in one or two sittings without getting sick).
  • 2 small jars of organic baby food – levels 1 and 2 only.
  • 1 pouch of pureed baby food
  • 2 tablespoons of peanut butter.
  • 2 high-calorie coffee drinks from Starbucks (to maintain/gain weight).
  • 1 yogurt packet.
  • As many pretzels, crackers, or chips I can handle.
  • Popsicle or Italian ice – only if I can manage it as well.

For another condition, Postural Orthostatic Tachycardia Syndrome (or POTS Syndrome), I require a high intake of  both water and electrolyte drinks (e.g., Pedialyte) to help increase blood volume and prevent dehydration, along with a high sodium (or salt) diet to keep my blood pressure  high enough so that I don’t faint multiple times in a single day .

All day long, all it feels like all I do is eat and count calories. One bite here, another sip there – it’s honestly exhausting! Especially when you spent years actively avoiding food since it was the source of so much pain.

3. You prepare yourself to be strong mentally.

In any form of competition, you have to be strong not only physically but mentally as well. According to an article by Sports Psychology Today (2011),”mental preparation helps athletes achieve a focused, confident and trusting mindset to help them compete at their highest level” (para. 2). While some athletes use meditation, others prefer to listen to music for motivation. I always preferred visualization when I was able to compete. As Handel (2012) explains, “in preparation for a game, athletes will run through different situations in their imagination as a kind of mental rehearsal. This way, when they are confronted with the situation in real-life, their mind is already primed to respond to the situation in an effective way…Contrary to common misconceptions, visualization is most effective when athletes focus on the process rather than the outcomes” (para. 11 and 13)

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Essentially, I use this very same strategy to manage life as a professional patient as well. After years of doctors telling me that my symptoms were caused by anxiety or depression, I mentally prepare for all appointment by preparing notes and deciding what I want to say ahead of time. Then I formulate counter-arguments based on current medical research to make sure that my concerns are taking seriously. Sometimes I need to prepare myself mentally before I gain enough courage to go ahead  with a certain medical test or an experimental treatment plan simply because it makes me nervous for whatever reason. There are some days that my symptoms can be so bad that mental preparation becomes necessary just to make it out of my bed.

2. You can handle high levels of pain like a champion.

For the most part, nearly every competitive sport out there involves feeling pain in some, way, shape, or form. For instance, pain and injury could result from overworking yourself during practice or you could suffer a really bad head injury during competition. Although I never personally got severely hurt in competitive swimming, aside from the ocassional ear infections and a pulled muscle or two, other sports I did over the years did result in extreme forms of pain and injury. In cheerleading, for example, I suffered from 6 concussions, a broken nose, a fractured jaw, and two broken ankles – all in the span of a single season. Even with broken bones, though, I still performed  because I was the captain and I didn’t want to let my squad down.As the old adage goes, no pain – no gain, right?

It is the same with chronic illness. Often we feel pressure to do things we know we shouldn’t do but we do anyways because we either feel guilty or think that it’s an expectation. Additionally, since we experience high levels of pain almost each and every day, we have learned to handle our pain much better than the average person. When I started receiving Botox injections for migraines, for instance, my neurologist commented about how I was her favorite patient because I didn’t even flinch once as she injected needles into various places across my face, forehead, and neck. I’ve also had nurses surprised that I would barely move when they would blow a vein during a catheter placements or the fact that I didn’t cry when I had a biopsy taken from my scalp without any form of sedation (not even a local), which was later cauterized with colloidal silver instead of the normal placement of sutures. Really, it’s not that you don’t feel the pain anymore – it’s just that you handle pain better now because you’ve dealt with it for so long.

1. There’s strong camaraderie between you and your team members/fellow spoonies.

When the entirety of your life is spent training and competing, often the only people you get to see regularly is your fellow team members. Basically, they become your new family since you spend every waking moment together and they understand what you’re going through.

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When you’re sick, it can be hard to relate to people who are healthy. We feel judged by others because of our illnesses and most people can’t understand what it’s like to be chronically ill. This includes the majority of  our closest friends, family members, and doctors as well. The only people who get it are other spoonies or warriors that have gone through what you’ve gone through, and therefore  understand where you’re coming from.The chronic illness community offers a lot of support to members because we all know what it’s like to be alone or afraid. We’re so tight-knit that we have developed our own language, laugh at our jokes, and establish rules that most outsiders are unlikely to be conscious of unless they’re given an explanation. Even then, it’s hard to understand because they have experienced as much as we have. In a way, it makes up for all that’s been lost to chronic illness. Like a secret society, but one that nobody chose to join by their own accord – it’s simply involuntary recruitment into this life.



References:

Edger, M. (2011). Five tips for mental preparation. Sports Psychology Today. Retrieved from http://www.sportpsychologytoday.com/youth-sports-psychology/five-components-of-mental-preparation/

Men’s Fitness Magazine (2014). Fitness Secrets of Olympic Athletes. Retrieved from http://www.mensfitness.com/training/pro-tips/fitness-secrets-of-olympic-athletes

Handel, S. (2012). The Emotion Machine. Retrieved from http://www.theemotionmachine.com/4-mental-exercises-olympic-athletes-use-to-gain-that-extra-edge

Kreher, J.B. & Schwartz, J.B. (2012). Overtraining Syndrome: A practical guide. Sports Health, 4(2), 128-138. doi:  10.1177/1941738111434406

It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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suicide

National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

I swear I knew it all along…

After my venogram in December and the fiasco at my follow-up appointment to discuss surgery, I had pretty much given up hope that A) we had finalized a diagnosis and B) that I would ever get better. Unfortunately, my next round of follow-ups with the specialists weren’t much better.

By the time my follow-up with gastroenterology had rolled around at the end of January, I knew there really wasn’t much left to do as every GI test had been run up to this point and I was expecting to be let go after a full year of testing with really no results. As I’m sitting there in her office, explaining how once again I won’t be having surgery as expected, she asks me why they offered me the one surgery in the first place if they knew it wouldn’t help. I honestly have no idea what to tell her – Why don’t you ask them?  – I don’t dare say that out loud, though.I look over to see my husband is once again fidgeting in his chair, I can tell he’s getting angsty. However, I wasn’t anticipating what happened next.

In almost slow motion, I watched him mouth the words …because nobody takes her pain f***ing seriously….one syllable at a time. He didn’t just say that out loud, did he? The doctor immediately asks him to leave. Okay, so I guess he really did say that out loud after all. I can tell my doctor was not amused as my husband  gets up from his chair and storms out, and I just sit there, on the exam table, in shock. Now, what? I wait for her to say something but I’m having a hard time holding back the tears in embarrassment and frustration. Really, though, my husband was right – no one does take my pain seriously and I’m becoming more and more tired each day. I really just want to go home at this point.

But somehow, the torture isn’t over for today. She says she wants me to have an anorectal manometry done to rule out pelvic floor dyssynergia for constipation that I have on and off. This is a joke, right? Nope, guess not. She thinks it’s in my head…. that maybe somehow I forgot how to have a bowel movement… I think she is far off with diagnosis. She thinks I should do it anyway. I agree… knowing I”ll prove her wrong… but finally able to leave. I’m not sure how this could get any worse, really… but somehow it always does.


WHAT IS ANORECTAL MANOMETRY?

(Retrieved from the Motility Society Website)

Anorectal manometry is a test performed to evaluate patients with constipation or fecal incontinence. This test measures the pressures of the anal sphincter muscles, the sensation in the rectum, and the neural reflexes that are needed for normal bowel movements.

PREPARATION

Give yourself one or two Fleet® enemas 2 hours prior to your study. You can purchase the Fleet enema from a pharmacy or supermarket. You should not eat anything during the two hours prior to the procedure. If you are diabetic, this may involve adjusting your diabetic medications. You may take regular medications with small sips of water at least 2 hours prior to the study.

THE PROCEDURE

The test takes approximately 30 minutes. You will be asked to change into a hospital gown. A technician or nurse will explain the procedure to you, take a brief health history, and answer any questions you may have. The patient then lies on his or her left side. A small, flexible tube, about the size of a thermometer, with a balloon at the end is inserted into the rectum. The catheter is connected to a machine that measures the pressure. During the test, the small balloon attached to the catheter may be inflated in the rectum to assess the normal reflex pathways. The nurse or technician may also ask the person to squeeze, relax, and push at various times. The anal sphincter muscle pressures are measured during each of these maneuvers. To squeeze, the patient tightens the sphincter muscles as if trying to prevent anything from coming out. To push or bear down, the patient strains down as if trying to have a bowel movement. Two other tests may be done: first, an anal sphincter electromyography (EMG), a test to evaluate the nerve supply to the anal muscle; second, measurement of the time it takes to expel a balloon from the rectum. After the examination, you may drive yourself home and go about your normal activities.

Anal Sphincter EMG

Anal sphincter electromyography (EMG) is recorded with a small plug electrode placed in the anal canal. The patient then is asked to relax, squeeze and push at different times. The anal sphincter muscle electrical activity is recorded and displayed on a computer screen. Anal sphincter EMG confirms the proper muscle contractions during squeezing and muscle relaxation during pushing. In people who paradoxically contract the sphincter and pelvic floor muscles, the tracing of electrical activity increases, instead of decreasing, during bearing down to simulate a bowel movement (defecation). Normal anal EMG activity with low anal squeeze pressures on manometry may indicate a torn sphincter muscle that could be repaired.

Balloon Expulsion Test

For this procedure, a small balloon is inserted into the rectum and then inflated with water. The patient goes to the bathroom and tries to defecate (expel) the small balloon from the rectum. The amount of time it takes to expel the balloon is recorded. Prolonged balloon expulsion suggests a dysfunction in the anorectum area. What can be learned from anorectal manometry? The anal and

WHAT CAN BE LEARNED FROM ANORECTAL MONOMETRY?

The anal and rectal area contains specialized muscles that are helpful to regulate proper passage of bowel movements. Normally, when stool enters the rectum, the anal sphincter muscle tightens to prevent passage of stool at an inconvenient time. If this muscle is weak or does not contract in a timely way, incontinence (leakage of stool) may occur. Normally, when a person pushes or bears down to have a bowel movement, the anal sphincter muscles relax. This will cause the pressures to decrease allowing evacuation of stool. If the sphincter muscles tighten when pushing, this could contribute to constipation. Anal manometry measures how strong the sphincter muscles are and whether they relax as they should during passing a stool. It provides helpful information to the doctor in treating patients with fecal incontinence or severe constipation. There are many causes of fecal incontinence. Weak anal sphincter muscles or poor sensation in the rectum can contribute to fecal incontinence. If these abnormalities are present, they can be treated. Biofeedback techniques using anal manometry and special exercises of the pelvic floor muscles can strengthen the muscles and improve sensation. This can help treat fecal incontinence. There are many causes of constipation. Some involve sluggish movement through the whole colon, whereas others involve the anal sphincter muscles. In some patients with constipation, the anal sphincter muscles do not relax appropriately when bearing down or pushing to have a bowel movement. This abnormal muscle function may cause a functional type of obstruction. Muscles that do not relax with bearing down can be retrained with biofeedback techniques using anal manometry.

Risks of Anorectal Manometry

Anorectal manometry is a safe, low risk procedure and is unlikely to cause any pain. Complications are rare: it is possible that a perforation (tearing) or bleeding of the rectum could occur. Equipment failure is a remote possibility. If you are allergic to latex, you should inform the nurse/technician before the test so that a latex free balloon can be used.


Let’s just say I was less than thrilled to have to do this test. Just the idea of having to take two fleet enemas and administer them on my own was enough to get me to freak out. Not to mention, since the test was over an hour and a half drives away, they told me to do it the night before. I was still petrified that I would have some embarrassing accident for sure. Not only did the cleansing make me super sick and dizzy, passing out every few minutes, but also had a lot of pain and bleeding afterward as well. It was almost as bad as the colonoscopy prep, only luckily I didn’t have to drink anything. Up until five minutes before leaving, I was still passing a good amount of blood. Nevertheless, I went to my scheduled appointment anyway.

Luckily, my nurse was very nice and calmed me down as I was very tense going into this test. Still, I was in a lot of pain and worried I’d embarrass myself so I was quite reserved. Along with using a balloon they also did the sponge test to see if I could “pass it”. Let me tell you, it felt like I was trying to pass sandpaper. It was horrible and I was in tears. The nurse tells me everything was within normal limits but a doctor would double-check my results to be sure. I figured my test would be normal anyways and I was just happy I was able to go home to recover.

When my follow-up with GI came around in March, I was far from prepared when the doctor told me that my manometry was positive and that I did, in fact, have pelvic floor dyssynergia. Excuse me, what? She’s sending me biofeedback therapy twice a week. Great, I think, just what I have time for. I honestly don’t know how this is possible based on my symptoms, but I schedule therapy anyway.

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After weeks of going to biofeedback therapy twice a week, my symptoms were anything but better. In fact, the extra added stress of trying to make it to therapy twice a week, on top of everything else, likely made everything worse. It was actual torture and I was starting to feel like this was punishment for my husband disrupting the appointment. The therapist also focused more on relaxing my vaginal muscles more than relaxing anything else, which I found to be useless in all honesty. How was this teaching me how not to be constipated, again? They kept asking me if I was eating – of course I’m not eating, that’s what causes the pain, but nobody listens to me. The honest truth, each and everyone one of my muscle in every area of my body  hurts. They are tense because I am always in intense pain every single day. I’m getting angry. I ask for a copy of my test results because I honestly don’t understand how I have this condition in the first place and all the results in biofeedback therapy are coming back as normal.

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When the report finally comes in, my test was borderline at very best. I knew it! I likely didn’t have completely “normal” results because I was in pain while “pushing” and now I’m really angry that I have wasted my time.

Within a few hours of reading the test results, I get a message from the radiologist that I had sent my GI scans to a few weeks back to review for me. I  had asked him to look at them for me since every doctor kept denying that I had superior mesenteric artery syndrome when the reports kept saying I had it, or the doctor would say I have the right angle for the condition but because I didn’t have dilation in my other GI scans, I couldn’t have it. Sure enough, the radiologist had confirmed not only the angle and the aortomesenteric distance, but the dilation of my duodenum was missed in three separate scans.

According to Karrer et al. (2015), the “CT criteria for the diagnosis of superior mesenteric artery syndrome include an aortomesenteric angle of less than 22 degrees and an aortomesenteric distance of less than 8-10 mm” (para. 1). My aortomesenteric angle was 17 degrees and my aortomesenteric angle was 4mm.

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When I went to my next biofeedback appointment, I share the diagnostic news with my therapist. She asks me if biofeedback has helped at all, which I of course reply that it hasn’t. She feels like the diagnosis is incorrect as well and decides to dismiss me from therapy. I have yet to follow-up with GI doctor but I have an appointment scheduled with her in a couple of weeks. Not sure how this is going to go, but I think this will be the last time that I see her – officially. Things were missed in my testing that was super important and  I could have been treated over a year ago when the testing first mentioned the findings of all these conditions. Again, if only these doctors would have listened to me or checked the scans themselves. My husband was right, despite his behavior that day. On top of it all, I was diagnosed with a condition that I feel was more of a punishment than something I believe the doctor would honestly never think that I have since I do not have 99% of the symptoms of pelvic floor dyssynergia.Needless to say, it’s going to be interesting to an interesting follow-up. Maybe I’ll bring my husband with me one more time…

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References:

Karrer et al. (2015). Superior Mesenteric Artery Syndrome Workup. Retrieved from http://emedicine.medscape.com/article/932220-workup

Motility Society (2005). Patient Information on Anorectal Monometry. Retrieved from http://www.motilitysociety.org/patient/pdf/Anorectal%20Manometry%20Patient%20Information%208%205%202005.pdf