I have a confession to make. A big one…
I’m 32 years old and I have endometriosis.
This was not a diagnosis I came upon quickly. In fact, it took me 14 years to get a proper diagnosis, another year to have laparoscopic surgery, and still another 3 years to find a doctor who specialized in excision surgery.
It wasn’t until summer of 2017 that I started putting two and two together and realized I’ve been sick since shortly after starting my period at the age of 14. I’ve continually suffered from major migraines since age 8. They had gotten a worse over the years, but I didn’t think much of it. My periods were getting worse as well. I’d always had horribly painful periods, but they were never heavy or seemed to last very long. I considered myself very lucky since so many women in my family had to alter their lives around their periods due to their heavy flow and debilitating pain. Those things aren’t what made me start wondering what the heck was wrong with my body. Can you believe that??? What I did notice, and what finally made me take notice, was a huge drop in my energy levels. Sure, I was still very active and involved in sports, but I was finding it harder and harder to get up each morning. Sometimes I’d force myself to go on a run after volleyball practice because I needed to prove to myself that my body was capable of being active when it felt like all I wanted to do was sleep. It was a battle, but because I’m stubborn and maybe a bit hard-headed, I learned to adopt the ‘mind over matter’ mindset at a very young age, mind you my sickness started, or rather the symptoms at age 14. Some days my lack of energy was so high that getting through the day was a chore. Next, I started having digestive issues. I tried to eat a little healthier, but at that age 14 I thought a salad with ranch dressing and cheddar cheese was the epitome of healthy eating. I had never heard of gluten, dairy, or sugars being bad for you. In fact, I didn’t know what gluten was until my late 20’s, or that diary may not be the best thing for you (so much for the ‘glass of milk a day’ bill of goods I was sold as a child).
When I was in my mid 20’s my symptoms became worse seemingly overnight. This began my treacherous journey of trying to figure out what was making me feel so terrible. For a few years I felt like I was on a witch hunt. Doctor after doctor, prescription after prescription. Being told I’m fine, being told I’m depressed. I could write a laundry list of the tests I was constantly enduring, and the litany of improper diagnoses I received. The worst part was, they could never find anything “wrong” with me. Nothing is wrong with me. Sounds great, right??? Wrong. Nothing makes you feel crazier than knowing something is wrong with your body, and having a doctor - the one who is supposed to ‘fix’ you - tell you you’re wrong. I knew without a doubt that something was absolutely not right in my body. After seeing the same doctor several times with the same ‘you’re fine’ result, he started to take me seriously. However, he didn’t have any answers for me. He finally told me that he did believe I was sick, but that I ‘presented’ healthy and would need to find a doctor who has seen exactly what issues I ‘m showing in another seemingly healthy person. I know it sounds crazy but just that one utterance helped me to feel slightly vindicate and also empowered, I was going to find out what was wrong with me. The problem, like so many other women with this disease, I didn’t know where to start, what doctor do I try next, how do I get a referral, how the heck do I afford to pay for this, the list goes on.
Readers – before I continue, I must encourage you to trust yourselves and trust your bodies. You know you better than any doctor ever will. When a young, fit, seemingly healthy individual walks into a doctor’s office and complains of pain, and there’s not a clear and immediate answer, you can be written off simply because you ‘appear’ healthy. You are your own best advocate. And you need to be. Keep digging for answers. End rant. Sorry
Back to my story. I’ll save you all the details of the doctors I saw, the tests I had run, the money I spent that still gave me no answers. I was defeated and still feeling very sick. At this point in my journey, it had been about 3 years of consistently searching for help. I’d completely changed my diet, I’d gone off birth control and had seen every doctor I could think of to try and figure out what was wrong with me. I finally went back to my gynecologist and said something was wrong with my stomach or reproductive system and I NEED you to figure out what it is. At this point, I’d really had enough and couldn’t keep living like this. I felt like I was going mental because I was continually told I was ‘fine.’
And then….. LIGHTBULB MOMENT!!!!! My doctor said, “I don’t know why I haven’t thought of this sooner, you may have endometriosis.” I’m thinking to myself ‘oh really?’ But wait no. I already knew what endometriosis was because my sister was unable to stay pregnant due to endo. Our symptoms, however, were so different that it had never crossed my mind I could have the same thing. SIDE NOTE: I’m happy to report that after one laparoscopy (and some fertility drugs), my sister was and was able to conceive twins mere weeks after her surgery! She was fixed ‘so good’ that she then conceived again when the twins were just 5 months old (yes, her house is complete chaos – in a good way).
Long story short, I had surgery and I had endo lesions, lots of endo lesions. The funny thing I learned is that endometriosis can’t be officially diagnosed until the surgeon is actually in your abdomen. It’s basically an ‘exploratory’ surgery because you don’t know what you’ll find when you get in there. My first doctor performed ablation surgery (burning the endometrial lesions- unfortunately I hadn’t educated myself enough to know better) and then he told me I was better. I’m sure you can imagine my relief! Unfortunately, that was short lived. I never had my pain free moment like I was hoping, and I ended up feeling worse very shortly after surgery, and by shortly I’m talking like a week, tops. When I spoke to my doctor, he told me there was no way, he’d removed the endo and I was better. I trusted him (he was my doctor after all, and they know everything. Insert eye roll here), yet I continued to feel terrible. I just didn’t know where to turn. Sadly, I’ve learned that many women can relate to this story.
My disease finally came to a head last year while I was planning my wedding. What was supposed to be the happiest time in my life was turning into one of the most painful, frustrating times. I told my fiancé (now husband), that after the wedding I HAD TO consult with an endometriosis specialist. Something had clearly taken a turn for the worse in my body, and I was just hoping I could make it through my wedding (not what I’d envisioned being a bride would feel like). I was lucky there for awhile, and through diet I was able to get my endo belly to go down enough that I felt comfortable wearing my wedding dress (we all know how bad the dreaded endo belly can get). Little did I know how short lived that would be. Between starting birth control again, and going off my anti-inflammatory diet, I ended up having the worst flare of my life to date (while in NZ on our honeymoon).
I told myself that flare up was because I was on my honeymoon. You know, lots of newlywed things (haha), bad foods, cocktails, etc. Once I got home everything would be better right? Wrong. After returning to the states and my regular diet, I was still not feeling well. I started having crippling back pain and figured I must have pulled my back out. One night when the pain was so intense it woke me up at 2am, I KNEW something had to change. I’m 31 years old, I cannot be losing sleep and feeling sick 100% of the time. I fired up my laptop and didn’t go back to sleep that night. Instead I googled and sought every ounce of information I could find about endometriosis. I can’t tell you how much this Ted Talk impacted my life and encouraged me to advocate for myself and for my health.
Y’all, when I am on a mission, I am a dang detective and there is nothing me and my computer cannot track down (just ask my ex boyfriends, haha kidding…kinda). After hours of searching, scheduling consults with doctors, and ordering “The Doctor will see you now,” I felt like I was finally going to do something about this – there would be no more dead ends for me. I learned the difference between ablation and excision surgery (the gold standard for endo removal) and realized I must see an excision specialist. To learn more about the differences please read HERE. I scheduled an appoint with Dr. Tamer Seckin, we were on opposite coasts but at this point I figured I would make the trips to NYC if this Doctor could finally be the one to help me.
After consulting with Dr. Seckin and scheduling my second laparoscopy for endo, I almost chickened out. Not because I was afraid of the surgery, but I was afraid they wouldn’t find anything. I was afraid I’d waste money. I was replaying all the “you’re okay’s” I’d received from doctors in the past. I was afraid that this would be another dead end. I was afraid I’d waste more money and still not know what is going on.
Looking back, I almost laugh at myself. I had already been diagnosed with endo. I knew I had it but I let all the years of failed doctor’s visits and negativity creep in. My husband and I prayed about it. We both knew deep down this was the right – and possibly only – option for me to feel better because I refused to try any other drugs to “help” endo.
Now, to the good part!
Surgery was scheduled for October 20th, 2017. I was so anxious the night before I didn’t sleep a wink; partially because I was still worried they wouldn’t find anything, and partially because, well, the bowel prep was getting the best of me (I’m sure my endo sisters can relate, woof). The morning of surgery was a whirlwind and I just couldn’t wait to get a move on. In my mind this was what I’d been waiting for. When I woke up from surgery, the first memory I have was Ryan (my husband), and Dr. Seckin, standing at the end of my bed. Ryan was so excited. He was holding an envelope and turned around with the biggest grin and told me they took out 31 lesions, as well as my appendix (which was not on the agenda). He told me I was COVERED in this junk! When I was a little more coherent Ryan started showing me the pictures of my surgery. He was so excited to tell me all the places they found it and show me my bad appendix. He then said “babe, you were really, really sick.” Here’s where I finally felt vindicated!! Hearing that they found and removed all those lesions made me want to cry, and this time, happy tears. Not only that, I felt profoundly different immediately after surgery. Yes, I was in pain, but it was a totally different pain. It was pain from being operated on, pain from suspending my ovary, not the long list of pains I came in with. It felt like poison had literally been removed from my body. It’s funny because an hour after my operation, Ryan looked over at me and said, “I know this sounds crazy, but you look healthier, your skin looks good and you just look good, you look relieved.” It felt so nice to hear because for the first time in a long time when he said I looked good, I actually felt good!
I have the best husband - I truly won the lottery with him - but I’d be lying if I said this disease didn’t create some very tense moments in our relationship and early into our marriage. It is hard on a spouse when they see you hurting and can’t do anything about it. It is even hard sometimes for them to believe you’re sick, or as sick as you are. I like to think I’m tough. I power through what feels like a million things a day, so it’s hard to think that I could feel anything less than great. But then when I let my guard down, when the pain finally wins, Ryan sees. He sees that sometimes it’s non-stop. That is not easy for anyone - it’s not easy for those of us living with the disease, or for our loved ones dealing with the affects of the disease. In that moment right after surgery, I felt like Ryan really understood my struggle and I felt the most supported I ever had. I finally felt like I wasn’t crazy!
I know this disease is something I will always live with. I know I will have bad days. I know I will have to adjust my supplements, and sometimes I will need to miss out on social events and go to bed early. I know now that I need to always follow an anti-inflammatory diet, , limit my wine intake (whyyyyyy) and that I have to be pretty regimented with my schedule, diet, and workout routines. It’s a big commitment, and to be honest, some days I simply don’t feel like doing it. However, I know that my health is too important to take the easy way out, and I NEVER want to feel the way I did last year ever again.
I’m so thankful that I found Dr. Seckin. He understood this disease, and me, more than anyone I have ever encountered. In short, he gave me my life back! He helped me more in the 3 weeks than the 17 years of constant doctor visits. It takes women an average of 10 years from onset of symptoms to proper diagnosis. If you think you have endo or know someone who does, don’t give up! Find the right doctors for you. Find doctors that take your insurance or have financial assistance programs. Join support groups. Try changing your diet. Try yoga. Try Eastern medicine. Try until you find what works for you! You deserve to be heard, to feel healthy, and to live a happy life despite this nasty disease!
To all my endo sisters, keep fighting, and keep being rock stars! Share your stories, help educate, we are all in this together, and we can be a voice and a community for each other!!