Endometriosis Awareness:Chronic Illness May Change Your Journey

NEVER GIVE UP

I started my journey into the world of health and fitness four years ago this month. Four years ago this month is when I first walked into a Saturday CrossFit class and had my life turned upside down *Will Smith voice* 😛 … But really… I finally found something that triggered a change in me. I finally learned how to love my body and how to treat it like I do. I started to eat better. I got stronger and leaner. I FELT healthy. I felt GOOD every day… Little did I know that something unseen was brewing inside me. There was a piece of my health that I didn’t know was not being taken care of, that I didn’t know was not well.

I am sure you can tell by the title what that lovely piece was so let’s really start this discussion by defining endometriosis. It’s a term that I heard very few times before my own diagnosis. It was something that I didn’t fully understand even up to and after my surgery. Endometriosis is a chronic illness in females. It occurs when tissue that normally lines the inside of the uterus starts growing on the outside of the uterus; growing on the outside of any or all organs within the abdominal cavity. Because this tissue is similar to that of the tissue that lines the uterus it follows patterns and signals from the female hormones. Meaning that it reacts the way it would if inside the uterus, thickening and shedding in correlation to a women’s monthly cycle. However, with endometriosis, the tissue has nowhere to go, it cannot shed, and therefore creates scar tissue and adhesions on these organs.

Endometriosis is an unseen and for some silent (until its very much not) kind of disease. So, back to my journey, throughout this time making my body so healthy I was unknowingly developing what I would later find out to be 5 different spots of growth and adhesions caused by endometriosis. Because this disease not easily diagnosed, often misdiagnosed, and rarely discussed openly I went – what my doctor said was probably years – having these growths develop without knowing. Now they still don’t know the exact causes of endometriosis so could I have stopped this? I don’t know. Would it not have been as bad if I found it earlier? I don’t know. My point in stating that this was a silent development in what I otherwise thought to be a healthy body is simply to show that there is not shame in developing an illness. That just because you lead a healthy lifestyle does not mean you cannot also have a chronic illness. You are not guilty. You are not a failure… But you can read more about my feelings on that in my first Endo post back in June.

Now where was I… Oh yeah… These growths where developing with me knowing. That is until everything came to a head and what used to be a “weird feeling in my right side of my abdomen sometimes” turned into an inability to function for days at a time. It turned into this incredible, incomparable pain in my abdomen. It turned into lying in bed crying. It turned into nausea, dizziness, and agonizing pain during various activities.

MONTHS of repeat ultrasounds, CT scans, birth control, pelvic exams, and blood tests with no results and no subsiding in pain later and finally in June of last year my doctor decided to operate. You see the only way to really truly diagnose endometriosis is through Laparoscopic surgery. So we did the surgery and she told me she was able to laser it all off. She made it seem as though that was it. I was good now, I would be pain free. She gave me a high dose birth control and sent me on my way.

I think I lasted a couple months without having pain again. By around the end of August I was back in her office. I told her there was pain and I didn’t know why. She said there was no way it was the endometriosis coming back so quickly so I thought it had to be something else. What else could be going wrong? She told me again it might be cysts – even though she didn’t find any – and again, I let it be. You see I was healthy. I eat paleo. I do crossfit. I coach crossfit. I am active. We use all natural products in our home. There was nothing that I could think that could be adversely affecting me. How could I get sick again?! It had to be nothing. It had to just be residual from the surgery.

Unfortunately everything got worse around October and November. I was so sick some days I would wake up in the middle of the night with my stomach swollen to where I looked pregnant and crying in so much agony. I would wake up my fiancé at 3 or 4 in the morning just for comfort because it felt like some sort of attack. In fact, many times this kind of severe endometriosis pain gets mistaken for appendicitis… or even worse, women with endometriosis don’t know they have appendicitis because of having dealt with the same pain for so long. I was nauseous and throwing up every day. I had to give up coaching crossfit because I couldn’t commit to being well enough every day to be physically active and able to do so. My health was so unpredictable. I was frustrated and angry. I went to doctor after doctor after doctor looking for answers, looking for a solution. If it wasn’t the endometriosis what else could it be?! What else could be wrong with me?!

I was told there was nothing wrong with me. My body is functioning great! Every test came back negative. Every exam from a specialist in every area possible showed nothing. While this would usually be good news, I knew I was in pain and I knew there had to be an answer. Even a desperate and scary ER visit resulted in a prescription for pain meds and nothing more. Finally I found a functional medicine doctor who ignited change in my search.

Recently, I have completed all the tests he recommended. I found out how crazy irregular my hormones are. I found out that yes, this all is the endometriosis. Yes, this is all from my hormones wreaking havoc on my body. The difference is that now I have a doctor that is not defining me based on my diagnosis and treating me just to ease my pain. I have a doctor that is working to get to the root of the problem. A doctor that is trying to figure out how to FIX my hormones – not mask them. It has been a grueling 4 months working with this new doctor. I discontinued my birth control in November. By doing this, some of those symptoms subsided. I stopped having gall bladder attacks. I stopped vomiting regularly. BUT I started feeling the most severe pain I have ever felt in my entire life. I started REALLY feeling my endometriosis pain. There was no shield anymore. What I thought was bad before was multiplied by 100. My hormones weren’t being suppressed. My cycle wasn’t being stopped. My hormones were allowed to function however they naturally wanted to. We had to see what they do on their own to know what they aren’t doing right? I was warned about the pain but not really… No one can be warned about this pain…

So what does endometriosis feel like?

I think this is the biggest, and most difficult to explain, factor when it comes to awareness. Awareness means spreading information – information of what the disease is, that there is no cure for it, that it is more common than you think (1 in 10 women), that it is NOT talked about enough, that there really is not enough scientific data for doctors to understand it enough, and that the pain is crippling. 

Endometriosis pain is chalked up to be “female pain” and thought up as just a “bad time of the month”. No. It is NOT just period pain. It is not just cramps. It is not just irritability. It is not the stuff that women can take Midol for and be able to go about their day. I have had trouble putting it into words myself but there are a few ways I have heard it described that hit home… 

One way is by Yellow Paper Dress:

“It feels like someone is grabbing your insides and twisting them as tightly as they can. Like the “rug burns” that children give each other on the playground by twisting the skin on their arms, but inside of your pelvis and abdomen…

Like a dull knife making quick jabs into your abdomen repetitively for days…

It feels like your body and insides are entirely bruised. Like your legs, hips, back, and stomach have all been punched repeatedly. Like pushing on a sprain or digging your thumb into a fresh, deep bruise…

Like a large hot iron, being prodded at your insides every few minutes. And even when the iron gets pulled away, there’s a lingering pain from the burn…

It is a relentless pain. Sharp and then dull. It teases with previews of what is to come, then magnifies your pain to points you didn’t know a person could tolerate until you had no other option.”


To me this picture here brings me almost to tears every time I see it because of how accurately it describes what I feel. I can almost envision that is what my insides look like. That is how powerfully accurate this is. My daily life consists of a dull pain, a discomfort if you will. I am never without it. Some days I do just have throbbing and “cramp like” symptoms. Those are good days in comparison. For about week or two each month I am bloated beyond a comfortable amount and I have a loss of appetite. In fact, I can almost barely eat because it just causes more discomfort or pain. But the physical pain is not even the worst part…

I am writing this post because awareness means knowing the torment we feel, including the psychological torment. It means letting other know they aren’t alone in this either. For me the worst part has been how exhausting this has been mentally, how much it has changed my entire life – without my permission. My new hormone treatment has left me exhausted and emotional. I cry more days than not. Sometimes I don’t know why and sometimes I can’t make it stop. Some days it almost feels like a wasted life. Some days I struggle so hard just to make it through the day. Some days the only thing in the world I want is just to not have to; to not have to leave my bed that day. Those days I am so blinded by the physical pain that I find myself heading home after work not even knowing what just happened in my day. But even more than all of that is the feeling of failure… Failure to continue this life of fitness I worked so hard to build. Too many days I feel like a disgrace to the person I want to be.

I am writing this post because there is not enough of this out there for women like myself… Trust me I looked… Over the last couple months I have spent countless hours doing research, reading other women’s stories and figuring out everything I could do to make my body as equipped to deal with this chronic illness as possible. The one thing I have not been able to find much of is support for women who are struggling with losing their athletic identity. Having to go through the recovery from surgery was difficult for me because I was limited at crossfit. I was forced to back off, not do certain things, and lift lighter or not workout at all. It was frustrating because crossfit has been such a part of my identity for years that I felt lost not being able to participate. I had no idea that this would be made worse. Over the past 4 months I am learning the things my body can and cannot tolerate. This month there were two full weeks that I was unable to participate in crossfit workouts or lift weights – at all. It just wasn’t an option. My body was in too much pain and strain of any kind only made that infinitely worse. Many times even when I do go to crossfit my body is so unpredictable that I have had days of crying myself through a workout because I felt so uncomfortable in my own body or days that one movement unknowing exacerbated an inflamed area and prolonged my abdominal pain for an extra few days that month.

Changing my routine has been the most difficult part for me; acceptance of having to change even more so. Chiropractic, herbal supplements, acupuncture, yoga – lots of yoga, eating a mostly paleo, super food dense, and anti-inflammatory diet, and participating in crossfit workouts when I feel physically comfortable and able … Those are how I am getting through this time. That is what my routine looks like now. Trying to maintain an active lifestyle 5-6 days a week by participating in whatever activity my body is telling me it needs or wants – or can handle – that day.

The path through life is ever winding. The only constant is change. Having a chronic illness is a difficult thing to adapt to. It’s not a surgery or a broken bone where you heal after a given time and resume normal activity. It is a forever change. It is a change that is itself always changing. Most often, as is the case with endometriosis, it means a re-evaluation of your daily activities. It means a big lifestyle change. It means finding acceptance in yourself, in your illness, and in the changes you need to make.

I want women like me, struggling with having fitness routines of heaving lifting and hard workouts, to know that you are not alone in your mental battle to stay on your journey. I also want women like me to know that you are not weak and you are not a failure for changing your path. You are not less because you can’t lift heavy every day. You are not less because you can’t keep up with people in a WOD one day. You are not less if you cannot participate in intense workouts for a week. You are not less if you change your routine. You are not less if you shy away from what you used to do in order to open up space for things you can do… In fact, I think the acceptance to listen to your body and do these things makes you stronger than those who do not.

My advice is…

Set goals for yourself, realistic goals. Plan out your exercise routine for days or weeks at a time –avoid allowing yourself to fall into the slump of doing nothing for too long. BUT also find acceptance in the days you cannot stick to that plan. Know there is peace in having to run or go to yoga on the day you had planned to lift because that is what your body needs. Remind yourself that there is no shame or guilt in changing your fitness routine; that there is no failure in change but rather success. In fact, I think the acceptance to listen to your body and do these things makes you stronger than those who do not… For the most successful of people are those able to adapt to changes; in themselves, in their lives, and in their environments.

And always remember – You are strong. Even on the days where you don’t feel like you are. You are powerful. Even when you can’t hit that same power output in the gym. You are beautiful. Even through the weeks streaked with tears. You are everything you want to be.

NEVER GIVE UP.

Find what works for you, what works for your body. A change in your health and fitness journey does not have to mean an end.

“Where there is no movement there is pain. Where there is movement there is no pain.”

Keep moving. Keep going.

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