My Endometriosis Journey

I first got my period when I was in the sixth grade. I was one of the first to get it and of course, it was at a sleepover! I was able to guide my friends through their first periods and always had the supplies to help out. I remember one of my friends getting hers at a movie theater birthday party, and I was right there with a pad and all the great advice. It must have been the enneagram 2 in me, even back then I was “the helper”.

Soon my periods became not so fun and I seemed to be having way more trouble than all my friends. Suddenly, no one else was relating to my experience. Was I just a wimp? Every month I was in debilitating pain! Like stay home from school and miss important tests kinds of pain. My friends talked about mild cramps and would complain their periods were annoying but no one else was passing out in the school bathroom from the unbearable pain.

The Diagnosis

I remember getting terrible headaches and feeling completely out of commission for big dance team practices. I would have to sit out in track meets because I just couldn’t handle the heavy flow and the cramping. When I was about 16 I came down with flu-like symptoms and a fever that wouldn’t go away. I was admitted to the hospital and had emergency laparoscopic surgery. When I woke up we found out I was suffering from endometriosis. Doctors removed tissue and multiple cysts from my ovaries, one of which had ruptured and caused the fever.

At 16, I had no idea what this meant, and I absolutely didn’t think it would be something I would be writing about when I was 33. The truth is, it’s more common than we think and no one talks about it!

Endometriosis is when the tissues that line your uterus also exist outside of it. This can occur on your ovaries, fallopian tubes, and the tissue lining your pelvis. With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. The resulting pain is so physically and emotionally awful it can literally dominate a woman’s life.

Endometriosis Treatment

The answer for me at that time was to be put on birth control to regulate my cycles and hope for a lighter period. First up was the regular ol’ pill. I struggled with nausea and vomiting while on the pill and was missing even more school than before! Then I tried the patch, which at 16 wasn’t something I wanted to be showing off to everyone in the locker room during PE. Months of continued nausea and something had to give.

My OBGYN at the time had a suspicion I was producing too much estrogen which is also a symptom of endometriosis. She then recommended the shot. The shot had no added estrogen and would completely stop my menstrual cycle. It was like an answered prayer- NO MORE PERIODS! Period! It was great and seemed to work without the terrible side effects I was feeling from all the other methods I had tried.

Getting Pregnant 

For years, my endometriosis was in control by getting that shot in my behind every 3 months. But the years kept passing and soon I had been on that shot for over 10 years. NO periods for 10 years guys, I mean it was hard to let go of. But I was now engaged, wedding planning, and knew it would take a bit for my eggs to “wake up” so I wanted to cancel my next dose. A few months passed and then came my first period after 10 years. It was back with a vengeance. Hello, again endometriosis, sick days, heating pads, and bottles of ibuprofen.

After 3 years of trying to get pregnant, we finally got the blue positive we had been praying for! Endometriosis can also be to blame for many infertility issues. The morning after we excitedly told my parents they were going to have a grandbaby, I woke up at my mother’s house to loss. Some studies say women who have been diagnosed with endometriosis are 75% more likely to have a miscarriage. This wasn’t shocking to me, I was always told it was going to be very difficult for me to GET pregnant, and I had experienced that already. No one had explained to me how hard it was to STAY pregnant.

We struggled for many more months until we were finally blessed with our twins! They are 3.5 now and they are amazing and worth all the years of pain. Since they were born I have struggled with the thought of starting my journey with birth control again so I have been suffering in silence (okay maybe not so silently) every single month through terribly painful periods. Last April, we found out we were expecting again. My dad had just passed away and it was totally unexpected. It seemed to be the wrong timing for our busy life with then 2-year-old twins and dealing with immense grief but we were excited none the less. And then there it was again, loss.

Shortly after finding out we were pregnant again I was doubled over in pain. I knew what was coming but really, I had no idea. We reluctantly headed to the ER to tell them I was miscarrying. But this time something felt worse. After a silent, sad, and scary ultrasound I was told I would be rushed into emergency surgery due to “some kind of obstruction”. When I woke up from surgery my nurse explained to me they had removed my right fallopian tube. The pregnancy was ectopic and had ruptured the tube.

Now this one, I knew nothing about. I had no idea endometriosis could cause the tissue to obstruct my fallopian tubes, resulting in ectopic pregnancy. It’s been about 14 months since the ectopic and I hate to report, the periods are getting worse. I have spent the last year trying to dig into more natural ways to combat my endo pain.

Heavy thoughts swarm my mind of if and when is the time to get a hysterectomy. We haven’t made the decision on if we will continue trying to have more kids. I can get pregnant again with one fallopian tube. Chances of having yet another ectopic pregnancy are high. While we weigh our options I have made some changes to my diet, the supplements I am taking, and I have been pretty successful with natural pain management solutions. 

Endometriosis has been apart of who I am for as long as I can remember. It has created challenges in my life I have always, eventually conquered, but some days it feels all-consuming. If you have a friend, relative, or co-worker dealing with something like this, you likely have no idea. This silent disorder is only screaming inside of the women next to you. If it’s YOU who is screaming on the inside and looking for help coping, you are not alone. Your feelings are valid. Our stories may be different, but I am with you on this one. 

Do you struggle with endometriosis?