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I AM 1 In 10; My Endometriosis Diagnosis

endo surgery
March 2017 : Laparoscopic Surgery

You know that feeling, the feeling of, "something is not right with my body". And I don't mean in a negative kind of 'I hate my body' way. I mean a, something is seriously not right with it. I remember getting that feeling in high school.

But before I get into that, let me rewind even further first. Back to 6th grade. When I received my period. I was 11 years old and remember it like yesterday. I wasn't ready. I wasn't ready to be a grown up. To deal with everything that came with having a period. I was embarrassed, scared and felt alone. Our one day health class about the reproductive system, definitely did not prepare me for this moment. And even though my mom had bought me so many "You Are Growing Up" books to read and learn, I wasn't ready.

That day, when the blood gates decided to open, I was at a cheerleading function. When we got home that evening, I was getting undressed to shower. And I saw it. The glob of blood in my pants. I began to sob uncontrollably. Mostly because I was scared and also because they were my favorite shorts. Plus, how long had that been there? Who saw it? Anyone?

When my mom came into my room to see why I hadn't showered yet, she found me crying, clutching onto my shorts. When she realized what was wrong, she calmly helped me get myself together. It wasn't a big deal, right? A period was normal. And I may have been the first out of my group of friends but, they were going to get it too eventually. And now I was already one step ahead of them.

But for me, it wasn't just a period. It was almost like a volcano. The amount of blood that would erupt each month and the pain, my god the pain, couldn't be what a normal period should feel like. Right? I ended up dealing with this volcano until about 15/16 years old. I was starting to have really bad pains on my sides. My mom decided it was time to see a gynecologist. After my first appointment, I had learned that I had cysts on my ovaries, which was causing me so much pain. My gynecologist told me it was all normal, including my heavy bleeding. And stuck me on birth control to help control my cysts.

As months started to pass, I was still having some serious stomach issues. Now it was troubling my bowels. When my primary care doctor and gynecologist could not help me, we began the journey with a GI doctor. I remember sitting in the exam room and the doctor pushing around on my stomach. He felt lump upon lump saying it was my intestines I was feeling because they were so full. (I was going weeks without bowel movements). He suggested the only possible thing to test me for anything would be a colonoscopy. The thought of a camera being shoved up my butt was not pleasant, especially being a junior in high school. But it was my only option. Enemas and laxatives were not working.

But I can tell you, that colonoscopy was a waist of time. Results came back perfect and my doctor sent me away with only having IBS. But I was still finding myself landing in the ER with severe stomach pains. That would have me hunched over. Screaming. Many times they thought it was my appendix, but when that came back fine, they would send me home with the diagnosis of just 'gas'.

This went on for years. Lots of doctor visits, ER visits, scans, blood work. Until I finally just decided to give up. No

one was helping me. The way I was feeling, was obviously normal. I wasn't sick, or well had no proof that I was.

It was probably 2011/2012 where I received a phone call that my pap was abnormal. Thankfully, the procedure I had done to double check, came out normal and everything ended up ok. But it was around then where I started to notice changes. Bleeding, lots more bleeding. Lots more pain. So I started the doctor journey again. When nothing was being found, I again gave up. But in 2016, it wasn't just heavy bleeding and pain. Symptoms increased and they were increasing with vengeance. Daily nausea/throwing up, constant constipation or diarrhea, stomach pains that had me crippled over crying during bowel movements, pain throughout my body, trouble breathing, hormonal issues, blood clots, dizzy spells/black out spells, constant low grade fevers, rashes, abnormal weight gain, depression, anxiety and so much more. What had started out years ago as only 3 symptoms, now turned into this list of never ending things happening to me. Could this have been prevented if doctors just listened to me years ago when my symptoms began?

Another colonoscopy, scans, stomach studies, endoscopy, bloodwork, stress test, heart and lung tests were all performed numerous times. And the same answer from each specialist followed, "I just don't know". Even though small things were found with each test, they were not big enough to continue to monitor, according to the doctors. The constant back and forth was starting to take a toll on me. Doctors telling me each time I was healthy, even with these symptoms occurring, upset me more and more. I wasn't ok. These symptoms weren't just happening for the hell of it. In the end, most of the doctors chalked it up to IBS and depression. I was put on medicine for both; and both made me very sick. News flash people, those two issues were not what was going on with me. I stopped the meds and decided to research what else could be going on with me. I finally found the word 'endometriosis' and that it ran in the family. The symptoms all made sense, that was me. That was what I had. I was sure of it. SO I scheduled an appointment with a new gyno. The appointment turned into a nightmare, so I had to search for ANOTHER doctor. This time I thought I would try a male gyno.

He seemed great. Listened to me, asked me questions seemed super caring. That was until he brought my husband into the room with us, and basically said "Your wife needs therapy". "She is perfectly healthy. And even though endometriosis runs in her family, there is NO possible way she has it also." "Surgery would be a waste of time for her". If it was acceptable to slap him, I most likely would have right then and there. But I nodded my head and left the office with my tail between my legs; as if I just been hit with a newspaper for soiling the carpet.

I finally lost it at this point. I didn't know what else to do but just live with these constant symptoms. My husband helped me call insurance to figure out other places I can go, where they would specifically help me with endometriosis. A few days later, a family friend reached out and told me about a specialist they had seen in Atlanta for her daughter. He sounded amazing. It all sounded amazing, except they were out of network; did not take insurance. This scared me but I figured if others could afford it, I could figure out a way. When I called for my consultation, the doctor agreed I 100% had endo and needed surgery done. I scheduled my appointment, put down my deposit and was ready to get this over with. Until a few days later I received the paper work showing what I would owe. $12,000 the day of surgery and no more than $26,000 after surgery. Up front, out of pocket. Not given any payment plan options. I called them crying hysterically and they said sorry- but there was nothing they could do; we had to cancel.

Back to square one, suffering badly with no one who could help me. We finally came across a hospital where the doctor sad he would see me about my potential endo. He was not a specialist but said he would be able to perform laparoscopy to diagnose me. My husband was working that day so my parents took me. As I walked back into the room to talk with him, I was nervous. Was this finally going to be the answer to my constant suffering? But the conversation didn't start well. He began with saying surgery could be useless if I dont have it. That I should start with Lupron and other medications. I asked to be excused, ran to the waiting room with tears in my eyes and got my parents. They walked back in with me and with almost tears in their eyes for me, begged him to just help me. When we all finally were on the same page, we set up surgery. He warned us that he wasn't skilled in certain areas for the surgery, meaning, he wouldn't be able to explore certain areas, and if anything went wrong, he would have a back up surgeon on call. At this point, I was okay taking this risk. I wanted answers so badly.

A few weeks went by and it was time for surgery day. I was nervous. The fact that there could be complications and also, what if he found nothing? This would confirm I am just cray cray! I was so used to being told nothing was wrong and that I was crazy that it would make perfect sense for it to happen again. As I got sent to the back to get ready for surgery, I thought about bailing. Why bother doing this, nothing is wrong Kim. But before I knew it, I was dressed in my surgery gown, drugged and feeling good. Hubby sat there till the bitter end until they wheeled me back to the OR. The OR was cold, and filled with SO many different nurses, doctors, and who knows who else. I remember being injected with one more thing and was told to start counting backwards. I don't even remember getting one number in before everything went dark.

A few hours later, I remember waking up crying hysterically. I don't really know why I was, but I couldn't calm down. When they finally calmed me down, the doctor was in my face. I remember seeing his face but it was so blurry. I was still loopy and not fully there. But he was there "You have it Kim, You DO HAVE ENDO". That day I left the hospital, in pain, scared about what was to come but happy. Happy I finally had an answer. I wasn't crazy anymore. I was brave, for fighting until someone listened to me and diagnosed me with what I was probably struggling with for years. Those previous doctors, who shrugged me off as a lunatic will never know how badly they screwed up doing their jobs. Except for one doctor in particular. Whom I messaged the day after my surgery. The one who embarrassed me in front of my husband. I needed to let him know how much of an asshole he was. Except, that wasn't what my email said. I was actually calm, professional and way nicer than he deserved.

So if you are reading this, I hope you know just how important it is to be your own advocate. DO not believe that any sort of pain is NORMAL. Do not believe that you are crazy. Only YOU know if something is wrong with your body. Fight. Fight until someone listens to you. And don't give up. Don't you dare ever give up. 💛

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