A little over a month ago marked a year since I had surgery for my Endometriosis. It’s been a bumpy and painful road to my diagnosis because there isn’t a way to be truly diagnosed without having surgery. I first started having pain that eventually led to my surgery when I was only 14. It took 6 years to find a doctor who believed I was in pain, my pain was valid, and cared enough about me to help me figure out what was really wrong. I didn’t even know what Endometriosis was, no doctor had ever mentioned it to me, despite having severe symptoms.

My neurologist was actually the first doctor to ask me if I had been diagnosed with Endometriosis, which is seemingly abnormal considering Endometriosis is a disease that affects a woman’s reproductive system. I was dazed. I had no idea what he was talking about and how no women’s health doctor had ever even mentioned the word to me before.

 

I immediately began reading about endometriosis because I had no idea what it was, all I knew was that whatever was happening to me was extremely painful and holding me back from functioning. Words like “infertility” and “adhesions” and phrases like “uterine wall,” “pelvic cavity,” and “internal tissues” kept popping up. I had no clue what I was reading or if even what I was reading was what I was dealing with.

 

Bare with me here, I know hardly anyone talks about things like Endometriosis. If you google it and get past all the medical sites you might find an article or two on Lena Dunham and how she has been extremely open with her struggles and hospital stays because of this disease. There are a handful of names you might recognize that have vocalized their diagnosis. Very few others have opened up about it, it’s not a pretty disease that people tend to advocate for and I can understand why, but that is why I am telling you this and why it has taken me more than a month to find a way to tell this story the only way I know how to. 

It took too long, but I finally found a doctor almost two years ago that believed my pain, Dr. P. She specializes in bio-identical hormone therapy, women’s health, and gynecology. She knows my entire case and is invested in it (unlike my previous gynecologist I was referred too when I was 14 after I had an ovarian cyst rupture and saw for years).

 

Dr. P sent me to a surgeon last year because she doesn’t perform the surgery herself. I had one consultation with my surgeon before he performed my surgery. And although I was going in for the surgery, I still didn’t completely understand this disease, especially how to explain it to my friends and family. That’s when I decided I needed to do my own digging in the weeks leading up to my surgery that was scheduled months out. I found a book that was written by a guy named Dr. Andrew Cook who specializes only in Endometriosis and is one of the top surgeons and specialists in this field. On the first page of the first chapter of Dr. Cook’s book he made me understand my body better than any doctor I had ever met. So instead of trying to explain to you what endometriosis is in my own hodge podge explanation I’m going to let him do it for me.

“From a medical point of view, Endometriosis is defined as a disease whereby the inside lining of the uterus, the endometrium, somehow implants and grows outside the uterus. Endometriosis lesions, which are like blisters can be found anywhere in the pelvic cavity, including in all the reproductive organs, the bladder, bowel, intestines, colon, appendix, and rectum. Endometriosis can also cause scar tissue (adhesions), which can make internal tissues sticky and sometimes even cause internal organs to fuse together. The hallmark of Endometriosis is severe pain. It can also cause infertility.

So much for the medical definition of endometriosis. In my experience treating women with pelvic pain—more than 25 years of residency, private practice, and fellowship—the medical definition doesn’t even come close to describing what it’s like to experience this disease.

Having Endometriosis is like having tens or hundreds of excruciatingly painful blisters or bee stings covering the inside of your pelvis. We all know how painful a small blister on the foot can be, and how sore the surrounding tissue is. When you’re hiking with a blister on your heel, every step can cause a sharp pain. A blister on your hand from a cooking burn can bother you for weeks, every time you accidentally touch it. Now imagine those blisters multiplied and multiplied, spread throughout your internal organs; picture the entire pelvic area red, raw, and sore. When the blisters ooze, they can spread to form other blisters, like poison oak does. Any jostling or movement aggravates the pain.”

As I read his words describing the pain of having Endometriosis like having hundreds of blisters or stings covering the insides of my belly the flood gates blocking my tear ducts broke and I lost control of my emotions. I felt betrayed by every doctor who I told how much pain I was in and didn’t tell me about this disease or care to think of any possibility of what it might be. I felt betrayed because this disease is common and I could’ve been diagnosed when my symptoms began at age 14 but I wasn’t until I was 20. I thought of all the times in high school I would hide in the bathroom in pain or would be crying into my locker because I was in so much pain and how that could’ve been managed if I had a doctor who cared or if people who knew about this disease spoke out about it.

 

When I went in for my consultation with my surgeon it didn’t take him all that long to agree to do surgery because he does these surgeries often and thought there was a pretty great chance he would find Endometriosis inside me. He explained that if he did in fact find Endometriosis and removed all the adhesions that didn’t mean I would actually be pain free. He said that some Endometriosis patients don’t have any pain but can have a lot of adhesions, that others are in so much pain but hardly have any adhesions. He also told me that the adhesions can cause nerve damage and there is no way to assure the surgery would be successful in getting rid of my pain.

I wasn’t scared of having endometriosis, for a little while I was scared of not having it because if not endometriosis then what? I got over that fear because I realized after reading Dr. Cook’s words that there’s no way I didn’t have it. I was terrified that my surgeon would be able to remove it all and it would be so small it would make me feel crazy and even more terrified that he would remove it all, however big and I would still be in the same amount of pain every day. My anxiety got a little out of control there for a little bit when I had to wait a couple months before I had surgery. I didn’t know how to distract myself from worrying about what was inside of me.

 

When the date of my surgery finally arrived I was overflowing with anxiety. I was honestly embarrassed that I was so nervous. I pride myself on being strong when it comes to these things. I don’t cry, let alone flinch when I am poked and prodded with needles, I don’t like to show any emotion to my doctors and if I am about to lose it I stay quiet. I have always felt the need to act like a warrior inside the walls of doctor’s offices, hospital rooms, waiting rooms. I save the anxieties, tears, and fears for my room or my car. I’d like to think that if I act like a warrior and don’t let any of the fears and anxieties get to me I may actually be one.

 

My surgery went smoothly. My surgeon came in after I woke from my drugged up state and showed me photos of what they removed. I was still pretty foggy from all the medicine and was feeling a what seemed like a million emotions at once. He handed me picture proof that I had an abdomen full of blisters. I wasn’t so crazy after all.

As the year mark of my surgery creped up and passed by this September, I did a lot of reflecting on how this disease has impacted my life and still continually does. This story doesn’t end with my surgery, so much has happened post-op that I’m not quite ready to tell you and I’m not sure when I will be. Every time I get a blister on the back of my heal I think about my abdomen and wonder if there are more growing in there too. I think about all the pain stupid blisters have caused me and all of the cysts that have left me on the floor in screaming pain and all the hospital beds I’ve landed in because of it.

 

I wonder why people are hesitant discussing Endometriosis. Maybe it’s because it affects a women’s reproductive system and women who suffer from it are likely to have infertility issues and those aren’t things we tend to openly discuss. I wish this was something that was talked about more frequently and openly, maybe then it wouldn’t take so long for women to be diagnosed and get the proper treatment.

 

If you suffer from Endometriosis or chronic pain, I hope you know you aren’t crazy. Your pain is real. Your pain is valid. I hope you find some relief soon, and most importantly I hope you know that you are not alone.

 

If you want to listen to the songs I was listening to when I wrote this click here.

 

Zephaniah 3:17 (NLT)

For the Lord your God is living among you. He is a mighty savior. He will take delight in your gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.

 

1 Peter 1:7 (NLT)

These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.