This is usually the first question I am asked immediately after, “Endo-what?!” The stigmas and stereotypes around endometriosis are off-kilter, because it’s not a widely known illness.  Because I am so open about it, people are usually looking at me like I will never have children. In their mind, endometriosis equals infertility. I wish more people knew and understood the pain that comes with it long before infertility is usually even a factor. An endometriosis “flare up” can be so painful that I can’t even leave my bed on some days.

In order to get to my diagnosis of endometriosis, we have to go back to the beginning. Not when I was born, that’s too far; but we will have to go to at least 15 years ago. I got my dreaded first period when I was 15 years old. Yes, I am aware that this is very late. (Side note: I told my mom in 8th grade I wanted to stop playing sports because I heard that athletic girls are more likely to get later periods and I just wanted to fit in with all of my friends that already had 3-5 years of puberty on me. True story.) For my first 5 years of my period, I was almost always irregular, but I never really had painful periods. I had a very short run-in with birth control pills at 19- I tried low doses of two separate prescriptions, but they both made me feel crazy, so I stopped taking them. I never went back on birth control after that.

Around 20, I started having more regular periods, but I also started getting very bad cramps with my period. I mean, cramps that would have me bent over, vomiting, and even passing out from the pain. When they first started, I would take over the counter stuff- Midol, Pamprin, Tylenol, Advil, etc. It worked on my cramps for about a year or two. I just thought I was having bad cramps, so I mentioned it to my gynecologist. She offered two solutions- birth control or a prescription for naproxen when needed. So, I filled the naproxen, and that still works for me as long as I take it BEFORE my symptoms start. At 26, a CT scan came up that I had a mass on my left ovary. My gynecologist told me it was a “dermoid cyst”, and since ovaries are cystic organs, I didn’t have much to worry about. Also, it didn’t seem like a problem because when I took the naproxen, I didn’t have too much pain.

“So, you mean to tell me that your doctor gave you a prescription for a magic pill that made your pain go away and you’re still complaining?” If that is what you are thinking, YES. Endometriosis is not just bad cramps- keep reading! All throughout my 20s, I also had stomach issues. Nausea after eating, diarrhea, constipation- you name it, I had it! I always knew that my period was going to wreck havoc on my bowels, I assumed it was something that just came with the territory of having a period. At 26, I had a bout with stomach pains so bad that I was in the emergency room TWICE in one week! I had CT scans done, blood drawn, ultrasounds completed- with no real answer as to why I was having these stomach pains. I went a few weeks later to get an endoscopy done, and nothing really came up for that, either. I feel as though the doctors just got exhausted with no answers, and said “You have Irritable Bowel Syndrome (IBS).”

Fast forward to my late 20s. Now I know I have a possible lingering “dermoid” cyst on my left ovary and IBS. I try to stay away from foods that I have learned will upset my stomach. I try to track my period and make sure that I take my naproxen before my period starts. My life gets a little better at 28, when my husband and I get married. Up to this point, my husband and I have not been wearing “protection” for about 2 years. We had stopped being cautious at all about 3 months before our wedding, with a whole “Whatever happens, happens” type of attitude. After being married for about 6 months with this same attitude, I was curious as to why I hadn’t gotten pregnant, so I inquired with my OBGYN. My OBGYN sent me for an ultrasound where they found a “mass” on my left ovary, presumably the same one she had found just two years before. (Side note: Endometriosis can NOT be diagnosed by an ultrasound, the picture does not show whether or not it’s endometrial tissue.)

After finding the mass on my left ovary via ultrasound, my OBGYN scheduled me for an explorative laparoscopy. She informed me that if it was a cyst, she would just drain it, but I definitely had the risk of some tissue on my left side where I could lose my left ovary. This was a scary thing to hear, considering the whole reason I went into her originally was because I wanted to make sure everything was okay with my fertility. So, on March 1, 2018, I went under for this laparoscopy. I remember upon waking up the only thing I could ask was, “Did the doctor have to take my left ovary?” I specifically remember three different people telling me no, that it was still there. When my mom and husband came back to the recovery room, I exclaimed, “They didn’t have to take my ovary!” My mom just looked at me with this pitiful look and said, “Oh honey, they didn’t. But you have endometriosis and you have to have another surgery.” Being in my state of anesthetic, I thought it would be right then and there, which gave my support team a good laugh.

At the post op appointment two weeks later, I got the entire 411 on what was found in my body. I was diagnosed with Stage III endometriosis and a chocolate cyst- the doctor told me that my left side was basically cemented in by this endometrial tissue. I had adhesions on my left ovary, left tube, mid- and lower-colon, and a small part of my uterus. If I told you I didn’t cry after this appointment, I would be a complete liar. I know that endometriosis is not (typically) a fatal illness, but there is no guaranteed cure for it. 1 in 10 women suffer from it and don’t even know! The doctor gave me some treatment options, and I told her that I appreciate all that she had done, and I had a lot to think about. I didn’t know what was coming for the next 6 months, but on the way out of the office that day, I ordered a book on Amazon that would change my life.