I’ve shared bits and piece of my story over the years here at A New Kind of Normal. I shared the struggle of redefining my womanhood after a total hysterectomy. I shared about my broken but blessed road to motherhood that followed. I’ve mentioned the initial moments following my diagnosis but not the moments that led me being diagnosed with endometriosis.
It was the summer before my final semester of college. I would be doing student teaching at a local elementary school teaching K-5 music. That summer I kept busy as I worked at a bookstore and also helped my then-boyfriend (now husband) with his youth ministry.
As the summer wore on, something felt off. I could not put my finger on it but in my gut I just knew. I cried . . . a lot. My body just seemed to be in a constant state of exhaustion. I called John many nights in tears and begged him to come over and be with me. I know that people thought I was losing it (they just didn’t know that I knew) but I knew something real was happening.
By August the pain set in. It started in my lower back and eventually became a constant presence as I started my student teaching. I talked with my cooperating teacher who suggested that maybe I had a bladder or kidney infection. A friend gave me some bladder medicine to help while I waited for my appointment with the medical clinic near campus.
The appointment came and John was kind enough to come with. He sat in the waiting room as I was called back. I peed in a cup and waited patiently for the results. The doctor came in and gave me the “good” news that everything was clear. No bladder, UT, or kidney infection. We still had to search for a cause of the pain so the poking and prodding began. She asked for my medical history although outside of a bout of mono a couple years before there wasn’t much to speak of. She started continued to questions as she began pressing on my abdomen and that was when I learned where my ovaries where and boy was that a painful lesson in anatomy. She helped me sit up and grabbed a referral form to the women’s clinic next door as she was certain it was a “female” problem.
I left the clinic in tears. I needed my mom but she was 5 hours away. I had never been to a women’s clinic and the thought of going completely alone to see a complete stranger terrified me. God definitely intervened on my behalf. When I called to make an appointment, my only request was to see a woman so they set me up with Dr. H who happened to be new. Little did I know that I would be meeting my guardian angel! God knew exactly who I needed at that point in my life as a petrified 22 year old college senior.
I had my initial appointment a few days later. I left the school with a hug from my cooperating teacher and drove the 2 miles to the doctors office. If I could not have been greeted by a more thoughtful and pleasant staff if I had ordered them out of a catalog so it definitely helped ease my nerves. As I sat alone on the tablet in my stylish gown, my mind raced with questions. Dr. H came in with a warm smile and inside I breathed a sigh of relief as I knew I was in good hands.
We went through the typical barrage of questions. Then came the part I dreaded and had been avoiding to this point in my semi-adult life – the exam. She asked if I wanted to see everything she would be using and I politely declined. Major negative. I took a deep breathe as I placed my feet in the stirrups. My sweet nurse held my hand, stroked my hair, and gently said, “Sweetie, we can’t do the exam if you knees are together.” Oops.
The initial tests included checks for various types of infections and STDs (which is standard procedure). She asked about my monthly cycles. It was at that time that I took notice how they had changed and had gotten gradually worse over the last year and sometimes left me bedridden and caused some major GI issues. It was then that she mentioned the word “endometriosis.” I had no idea what that was. I had a vague memory of someone mentioning it at some point years earlier in reference to a family friend facing fertility issues but that was is.
I would go in a week later to find that all tests came back negative for infections. We continued doing tests looking for a cause. I had my first pelvic ultrasound and believe that I died right there on that table at one point during the exam. Surgery to scheduled to check for endometriosis within 4 weeks of my initial visit. On September 17, 2003 my journey began as I was officially diagnosed with endometriosis and the journey continues to evolve 8 years and 5 surgeries later.
I tell you this story as it was during this time that I learned several things that would later form the basis of this blog.
1- Trust your gut. You know your body better than anyone else. I knew something was wrong. Some blew it off as stress of college or being plain crazy but I stuck to my guns until I received affirmation that yes there was indeed a problem. This has been a lesson that has carried me over the last eight years when not only battling endometriosis but fibromyalgia and celiac disease as well. Learning to become your own advocate is the best thing that anyone with chronic illness can do.
2- Find a Doctor You Can Trust. If something does seem right or you don’t feel like you are being heard, find someone who will listen. I got so extremely lucky on finding Dr. H the first time around (I did have to hunt for a good rheum though). She continues to be an amazing doctor and support in my journey (she has performed 4 out of my 5 surgeries and I swear knows more than any specialist I have seen). While many women bounce around to different doctors for years to find a diagnosis and relief (average length of time to diagnosis is 9.28 years per several studies), I was able to be diagnosed with endometriosis within a month. I continue to be affirmed that my pain is real and not something in my head. I am seen as a person not a case file or disease, even though pretty soon they are going to have to wheel my chart in on a cart.
These two things can put you on a path to finding a life more abundant despite your illness. We are strong and we can overcome. We may never be cured but we can continue to find joy. We may still experience pain but we can continue to have a purpose and a passion. Providing support and encouragement to others with chronic illness is my passion. I want others to know that they are not alone. I want others to know that they have a place to turn to cry, vent, and share a laugh when the times get tough. I may not have chosen this life with illness but I can chose to give God honor in spite of it and allow Him to turn something ugly into something beautiful!
Trust Your Gut ~ that is one of the most important things we can do for ourselves. Having been finally diagnosed with Lyme Disease a number of years ago was such a relief. I knew something was going on that wasn’t from depression. It took so much to not give up on myself and what I believed was going on. Thank you for writing your story, for being strong enough to see yourself through each day!
Thank you for your kind words Patricia! They really mean a lot!
Hi Jamee-, new SITSter following you 🙂 Your story is amazing. God bless you. I’m adding your button to my site 🙂
Thank you for visiting & for the encouragement Michelle!
There is just nothing like that doctor’s office when you know something is really wrong but…
I totally agree…the fear of the unknown (even if you suspect) is awful!
great post! i’ve had to be my own advocate (along with my husband) so many times but we know our bodies much better than any doctor.
This is a wonderful reminder to others that there IS life after chronic illness, and that the beginning of finding that life is to empower yourself. So often as patients we don’t realize that we ourselves are a powerful component of our own medical team. Trust in yourself – and others on the team – is the cornerstone of coming up with a treatment plan that you can all agree upon.
I just came over from the SITs site. What an inspiring story – I can’t imagine what this must have been like for you but it sounds as though you have been very fortunate with your choice of doctor and your ‘gut-feeling!
Thanks for stopping by & for your words of encouragement! I consider myself extremely lucky being able to find such a great doctor right off & getting a quick diagnosis! I am extremely grateful!
You are absolutely right that you are the one that knows your own body best, I have found this to be true myself when I had an ectopic pregnancy, which took a long time to confirm – but I knew I had it from early on.
Thank you for your helpful reply on BF.
I’ve had several instances over the years where I’ve been forced to choose between my gut & a doctor and most of the time my gut has been right! It definitely helped lead to getting a 2nd opinion regarding my GI issues and finally getting my Celiac diagnosis! Trusting yourself is so important!
Hey
New follower from MBC. Great blog! I’m a new celiac and still searching for some answers to weird test results. Wonderful to have found you!
Would love to have you drop by my place http://www.lifefromscratch.ca and facebook https://www.facebook.com/#!/LifeFromScratch
Thanks!
Jodi
Thank you for sharing your story! I just discovered your blog and relate to your perspective on a lot of aspects.
For me, “trust your gut” became extremely important after walking out of my very first appointment with a gynecologist, being told that if I wanted to correct my amenorrhea, I needed to gain weight. She actually told me, an active but normal sized 20-something to eat more and exercise less! Sometimes it feels like luck plays a big role in how everything plays out – like you finding a doctor you can trust the first time around, I just had to wait until I took a chance on a second gyno. He paid enough attention and cared enough to dig deeper leading to the discovery of a tumor on my pituitary gland, which was causing such a hormone imbalance!
I’ve just started blogging and you are inspiring me to talk more about what I have been/am still going through, as I can see meaningful connections being made on here!
Thank you!
Lyndsy
Thank you so much for stopping by! Through blogging and twitter I have made so many connections and feel like I know have a strong community of fellow spoonies who offer so much support & encouragement! I’ll check out your blog!
Hi Jamee! I stumbled across your site today and am so glad I did. I too suffer from Endo and it has been such a difficult journey. My symptoms began shortly after my first menstrual cycle as a teenager and took many doctors and many years to finally find one to even suggest that it may be Endo. Trusting your gut is so important when it comes to your body – I couldn’t have said it better myself. Knowing deep down inside that the amount of pain I was in was not normal is why I persisted and saw so many doctors rather than taking my first doctors word for it when he said “maybe you just have a low pain tolerance.” Thanks for sharing your story!
Wow. Can’t wait to share spoons. I, too, complete hyst bcoz of endo, and fibro, with a lil lupus mixed in yo keep things interesting. 😉
So good to find your site. Already quite helpful to me with info on fibromyalgia. also, My stepdaughter has been fighting endometriosis for years and learned the same lesson early on to trust her gut. When they suggested a hysterectomy she said no and found the best doctor, Dr. Cook, in northern CA and he got it all out and she has been pain free and doing really well for over a year! She was recently blessed with a beautiful baby girl via adoption and couldn’t be happier! You may already know her blog, as it is well known in the endo community, Single Infertile Female. If you don’t, you should check it out. You will love it!