Fair warning gentlemen, this is not the post for you unless you really REALLY want to read about “girl stuff”!

I'm Kaylyn and the following article is about my personal battle with endometriosis. It is the most common culprit for infertility issues in women. I aim to educate and advocate for myself as well as the other 176 million women fighting this disease.

June 18,2014, a day I’ll never forget. My mom and sister were out of town for a soccer tournament and for some reason I stayed home. Out of nowhere, an onset of excruciating pain occurred in my right abdomen. I remember taking myself to Urgent Care and waiting for what felt like hours. Finally, I’m led to the back by a nurse. When it’s all said and done I’ve had my veins on each arm stabbed twice because the nurse couldn’t take enough blood for a sample, an option of a toradol shot, and, “If this gets worse, you should really seek care at the Emergency Room.

June 19, 2014. My pain is worse, I’m nauseous, and vomiting. Having my nursing assistant background, I know this isn’t good. With a moan and groan, I force myself to get up off the floor and get in the car to make my way to the ER. I was almost certain my appendix was inflamed and if this was the case, I needed it to be taken care of before it became a serious issue. Thirty minutes later, I’m parking my car and gathering everything in me to walk inside and check in. I get in and the waiting room is full of people like me, sick, in pain, and eager to be seen by a doctor. I fill out the paperwork and sit down. Shortly thereafter, I hear my name being yelled. I get up and it’s a nurse wanting to take my vitals. She assesses me and sends me into a triage unit. I’m holding back tears, she does her checklist of things and sends me back out to the waiting room. I curl up into a ball in the seat and start to drift into sleep when all of a sudden, I’m being hurried into the back. I’m trying to move as fast as I can to keep up, but I really couldn’t walk. They situate me in room 23, take another set of vitals and start and IV. I sit there without any emotion. The nurse begins to ask a series of questions and I don’t even feel like it’s me that’s actually sitting in the room sick. She finally leaves.  I call my mom to tell her I’m in the ER and that I’m okay. I get wheeled back to the CT Scan room, they do their unpleasant procedures, and I get wheeled back to my room. My mom arrives and I fill her in. The CT scan comes back clean, they load me up with medications, and send me home. Their advice was to follow up with a gynecologist.

Three phone calls later and my mom handling matters for me, I receive an appointment five days out. For four days, I laid there in agony. My mom would have to help me sit up, move my feet off of my bed and help me stand up. She would help me get to the bathroom and other times just sit there with me until the medications would kick in. I see my first gynecologist June 24th, 2014. I’m in pain and my mother is literally dragging me down this long hallway so we can get to the proper suite. I’m crying and a physician sees me and immediately comes to our aid. He thinks it’s my appendix and we inform him of my ER visit. He gets us a wheelchair and I make it to my appointment on time. I meet the gynecologist and she appears to be very friendly and compassionate. I have my first pelvic exam and it was painful. She sends me down the hall to have an ultrasound. It comes back perfect. I get sent home with more meds. After a week, my pain subsides and I’m okay.

August 2014. I’m in excruciating pain again. I know this isn’t my appendix because it’s the same pain that I had in June. I see my gynecologist again. I drag myself there knowing I’m going to have to endure yet another pelvic exam. She tells me she thinks it’s another cyst and refills medications for me and sends me off. I schedule an appointment to have an ultrasound.I come back for it. I feel judged in the waiting room for the ultrasound. People are looking at me and assuming I’m pregnant. Then I’m sure they’re thinking, “Where is the father of her child?” Sadly, my belly is swollen and I’m in pain. It’s finally my turn and we discover a 2 inch ovarian cyst in my right ovary. Mind you ovaries are much much smaller than this. She tells me to come back in six weeks for a follow up, but I know how this goes. Three to four weeks later, the cyst would rupture.

I was laying in my bed and awakened at 7 a.m. sharp by a whole new level of pain I had never experienced before. My cyst ruptures and my uterus contracts trying to get the toxic fluid out. This continues for an hour and I feel sick to my stomach. I make my way to the bathroom and just sob. My body finally rests and I use the restroom. Exhausted, I make my way back to my room, take medicine, curl up with my heating pad, and pass out for the rest of the day.

I go to my follow up ultrasound knowing the cyst is gone. We celebrate, but for me it is no victory because the pain never subsided. I find myself back in the gynecology office for yet another pelvic exam. My gynecologist finally tells me that she believes I have endometriosis. I ask her how we can test to find out if I do have it. She informs me that there is no test or scan that can diagnose me and that I would have to undergo a procedure to get an official diagnosis. However she gives me three options:

  1. I can refer you to pain management and they can make you comfortable
  2. We can assume you have endometriosis and you can begin a six month Lupron treatment. Lupron chemically induces menopause for the length of time it is taken. It has several side effects and only temporarily suppresses endometriosis. As soon as the treatment ends, all of your symptoms return. Some women have success with this drug and it helps them long term. Other women however, experience several side effects, some irreversible. Lately it was discovered that Lupron was initially used to treat end stage prostate cancer in a palliative sense.
  3. We can do a diagnostic laparoscopy and see if you have endometriosis. If yours isn’t bad then you won’t have to do Lupron.

My mom and I read each other’s minds, but we ask for a few moments to discuss my options. We pick option three. My doctor returns and she sends us down to the scheduling office to set a date for surgery. I set the date to November 10th and I let my worries go. I would spend the next month and a half to two months getting through my college courses as best as I could while working as certified nursing assistant for a home healthcare agency. It was brutal, but I learned I was stronger than I thought. Little did I know that this was only the beginning of the biggest battle I would have to fight so far in life.

November 10th, 2014.

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Yea, I took a surgery selfie. Who doesn’t nowadays?

Hindsight is always 20/20. Little did I know that day my life would change drastically. My surgery was delayed 3 hours, they lost my paperwork, and almost ran an antibiotic in my IV that I’m allergic to. The surgery itself went well. An hour and fifteen minutes later and I was raising havoc in the recovery wing. Evidently I had been screaming for my mother and I told the nurse that my pain level as a 1,000 on a scale of 1 to 10. Needless to say, I do not come out of anesthesia well at all, but at least the nurse got a good laugh out of it.

Four days later, I would be attending my classes again and begin to work. Things would start to go back to normal. Finally my two week post-op appointment came around. My doctor confirmed that I have endometriosis. Endometriosis is a chronic autoimmune reproductive disorder with no cure in which cells from inside the uterus make their way outside of the uterus and plant themselves all over the organs in the abdomen. It causes pelvic pain, back pain, nausea, vomiting, headaches, ovarian cysts, internal bleeding, heavy periods, fatigue, and anemia among other symptoms. I have stage 1 endometriosis.  I know you’re probably thinking, “Stage 1? That’s it?” In the case of endometriosis, stages 1-4 refer to how badly the disease will effect fertility, not how much pain you have. Some women have stage four endometriosis and they feel no pain. Other women, like myself, have stage 1 and it’s debilitating.

The next year and a half of my life would have it ups and downs. There would be days where I would do really well and forget that I even had the disease and there would be days when I would just be in bed, curled up with my heating pad and cat, and cry it out. The thing about endometriosis is it is an invisible chronic illness. Looking at me in a crowd of people you would not be able to tell I’m sick unless I’m having an extremely high level pain day and on those days, I’m usually staying in bed. Makeup hides the circles and bags under my eyes. A smile hides the pain and sadness I feel. Clothing hides my “endo belly” when all of my organs get inflamed. My flesh hides the disease that’s raging through my body. I’m almost always tired because my body is constantly fighting itself 24/7/365. I try my best to get sleep but the pain and nausea often keeps me awake.

So now I’m sure you‘re wondering, “How do you treat this? This sounds horrible!”

  1. Ablation surgery has proven to make endometriosis come back faster and worse because it doesn’t address the entire bleb implanted on the organ but rather just burn the top of it. However, this is usually the most common treatment women receive for it
  2. Hormone therapies: Lupron, IUDs, Birth control implants, oral contraceptives….those are endlessly available and I’ve tried so many of them!
  3. Excision surgery: So far this appears to be one of the best treatment options. A skilled surgeon will go in and remove the entire endometrial bleb. This usually gives pain relief for a while and is highly successful. Unfortunately, the cost is high for these specialists and most insurance companies want you to see doctors not as knowledgeable in the field first.
  4. Hysterectomy: Unfortunately, some women have endometriosis so bad that they end up getting a hysterectomy after exhausting all options. This does not cure endometriosis but it can provide pain relief.
  5. Have a kid. I want to slap every doctor that has ever told me this. I’m 20 years old and that isn’t an option for me at all, especially when my fertility is already compromised. In fact, 30-50% of women diagnosed with endometriosis will not be able to have children. However, for women that are able to have children, sometimes the hormonal changes that come with pregnancy help suppress the endometriosis and thus reduce pain levels.

As for me, I have seen three gynecologists locally and one at Shands in Gainesville, FL. My first OBGYN performed the diagnostic laparoscopic surgery that would give me the diagnosis. She was really nice, was great at diagnosing me, but unfortunately could not offer much help with treating the disease itself. The second doctor I saw was horrible. He left me waiting in the waiting room for an hour, rushed my appointment since he was running behind and I saw him for 10 minutes max. Yes, he did the exam in those 10 minutes and it was probably the worst experience of my life. He told me to have a kid….I’m twenty and unmarried. Forget that! My third doctor has been the most compassionate. He takes the time to listen to me and gave me options on what therapies he wanted to try first.

PAUSE. Before I can continue, I have to explain my health insurance situation. My insurance company is a local HMO. So anything outside of my city and it’s not getting covered by my insurance company unless it is an urgent care or emergency room visit. There are also a few facilities such as Shands and Mayo Clinic that are contracted with my insurance company. I wanted to see an endometriosis specialist in Atlanta who could effectively treat my endometriosis with the best options available today. My insurance company required me to submit a medical review from a physician stating why he or she felt it was necessary for me to go to the out of network doctor. My first gynecologist refused to submit this review for reasons that I do not know to this day. The second doctor and I did not get along so I did not even ask. The third doctor did submit the medical review to the insurance company. Two weeks later, they told me, “No, you need to go to Shands because we have an equal substitute.” First off, the doctor I’m wanting to see in Atlanta performs excision surgery and he has been in practice for over twenty years now. He also is one of the best doctors for my disease in the world.

ANDDD ACTION. I went down to Shands which is a three hour from my hometown. I arrive right on time and I’m amazed by the architecture of the building. In my mind, I’m hoping that the doctor is as impressive as the building is.I walk in and immediately my positive attitude sinks. My insurance company sent me to a an infertility gynecologist. I’m not trying to get pregnant!! Furthermore, this doctor only had a clinical interest in endometriosis. Just because I’m interested in food and know a little something about it, that does not make a chef! I spent three hours with her. She did not listen nor did she even review my medical records…all four volumes I brought with me. Yes, my medical records come in different volumes! They’re lengthy. Then the doctor tried to tell me every reason I was wrong and misinformed. I live with this disease. It has been heavily researched within credible sources. Finally we agree to disagree and she sends me into the exam room with her student. Next thing I know we have multiple people in the room trying to decide if some cells are abnormal or not. My exam lasted an hour and again, it was extremely painful. Finally, they decide to take a biopsy and they send me home.Recently I found out that I do NOT have cancer! Praise God!

The hardest part about this disease is being in constant pain and nausea. The endless nights where I’m awake and throwing up are dreadful. It’s also hard accepting that I will have to deal with this my whole life and that if I don’t get to see the doctor in Atlanta, this disease could significantly reduce my fertility to the point where I cannot have children. I hope and pray that one day there is a cure for the 1 in 10 women that get diagnosed with this disease. The emotional aspect is also hard. You have ever-changing hormone levels so your emotions are all over the place and then the pain likes to butt in and cause depression. The important thing is to keep a positive attitude, keep fighting, and never give up.

Now, I’ve started yet another hormone therapy. This one is 5mg of progestin. Basically, it causes me to feel like I’m in menopause…hot flashes, cranky moods, and headaches oh my! I can’t complain too much though because it is reducing my pain levels and I even was able to start working out in the gym a month ago. This has definitely helped with my depression. I was diagnosed in February when I had a complete mental breakdown. Chronic pain causes toxic chemicals to be released and these often override any kind of mood elevating neurotransmitter such as serotonin or dopamine. I was put on medication and started counseling and now I am doing much better. I am able to be positive again, have joy in life and function better.

The biggest mistake I made with this disease is that I let it extinguish the blazing flame of zeal I had for life. I let it overtake me and overpower me. I allowed the disease to become and excuse for areas that I failed in. I failed in those areas because I began to give up and I never thought that I would get my life back. You can't do that. You must get up and put your feet on the floor every morning. You must have positive thoguhts. You must make the decision everyday that you will move forward despite the challenges you face. This applies to more than just people dealing with a chronic illness. We all have stories and struggle with different things, but now is the time to take captive of those things and rise above those circumstances. We must stand tall and show ourselves that despite the trials we moved forward even if somedays it takes everything you have. On the hardest days and in the toughest moments when you are on the brink of giving up, we must pause, breathe, smile, and laugh in the face of adversity because we are strong and we have a lot to offer the world with just the smallest talents we possess. We must learn to find the positives, laugh and enjoy life. we each learn from the things we go through in life and those events shape us. 

I do not know what the future holds for me as far as my disease goes, but I do know that i will never let it steal my joy again. I will not allow it to stop me from living my life to the fullest. Hopefully I will be able to see the specialist in Atlanta at some point and have excision surgery so that the blebs will be removed once and for all. I hope that as people become more aware, they will be more understanding when I’m not as social, or I’m too tired to go hang out, or if I’m in too much pain to even get up. I didn’t get to choose this disease…it chose me but I will fight it and continue to take it a day at a time, an hour at a time, and a minute at a time. I know I will still have bad days but God is greater than that and He has a plan for me and this disease. I look forward to seeing the next chapter of my life unfold as I start college again in the fall.