My Life with Endo…

In the beginning…

I started having periods around age 10. I was sooo lucky to start the day before leaving for a week long church camp. For being church camp, that was a hellacious aspect of the week! Like most young girls, I was mostly irregular with my cycles until I was around 13. Around that time was when the pain started each month. All through high school I’d have horrible cramping and awful periods. Such is life…so they say. (“they” can kiss my butt, because this was NOT normal!) I was able to function, go to school, work, whatever with the help of ibuprofen, but it was pretty painful. I also was no stranger to ovarian cysts. I’d find myself in pain often and every time an ultrasound was performed there’d be a cyst or four. A friend’s sister had endometriosis so I had heard the term, but never knew exactly what it was.

After High school…

Somewhere around age 19 or 20 I started having REALLY bad periods. TMI, but clots and nonstop bleeding were only the beginning. The pain was unbelievable. I would spike a fever, get dizzy, throw up. All I could manage to do was lay in bed with a heating pad. At this point I started my stint of getting gynecological opinions. Most wrote me off or suggested birth control pills (which, by the way, make Jessica one CRAZY lady!). My mom had an OB Nurse practitioner at the time that she really loved. I gave her a try. This woman actually told my mother after my visit (hello where were those HIPPAA laws in 2003?!) that I was a “hysterically dramatic young lady who needed to get used to being a woman”. (making yet another mental note to write that bitch a letter to explain endometriosis) This was all I ever heard. No one took me for my word. *Since originally posting this, I have mailed this practitioner a letter complete with a printed copy of this post.

Moving ahead…

I began having severe right sided pains one day that took my breath away. I went to an old school doctor who diagnosed me with appendicitis (no x-rays, no CT scan…just his gut feeling). I went in for an emergency appendectomy. While my appendix was a tiny big inflamed, they found the bigger problem was a big ovarian cyst on my right ovary. They removed the cyst and appendix. That was the day I was diagnosed with endometriosis. Stage 4 endometriosis. One of the worst cases my amazing surgeon had EVER seen. She told my mom that what I felt every month was likely comparable to childbirth. (Hysterically dramatic WHAT?!)

It’s Baby Time…

The surgeon who diagnosed me cleaned out as much as she could. I had my first baby boy when I was 25. When I was 26 I had another surgery to clean things up laparoscopically. I was told to go on birth control (crazy maker) for 3 months and then try like crazy for baby number 2. Well, once you learn more about my family you’ll know that baby number 2 is a very persistent and determined little fella! I got pregnant while taking that first month of birth control. I’m unbelievably blessed to have these little boys because so many women with endo can’t conceive. I remind myself how lucky I am every time I break up a “he’s breathing on me!” fight.

Baby Time, Take 2…

Baby number 2 did not, however, have an uneventful birth. He tried escaping around 28 weeks. I ended up on bedrest (with a toddler at home!) and had him at around 35 weeks. When he was born, my uterus was so weak from endometriosis that it ruptured. I’m talking split like a banana. You’re welcome for the visual. My midwife called in doctors and surgeons and I was swept off to the OR. The only thing they could do was a hysterectomy because I had lost over half the blood in my body and they were losing me. I woke up 8 hours later in ICU and had yet to hold my precious baby boy. I was actually relieved to know they’d done the hyster and asked why on earth they left my problematic ovaries! Of course, hey had to because there was too much trauma already. Fun fact for ya…I still had a MONTHLY PERIOD after my hysterectomy. And still do.

Soccer Ball Belly….

The year I graduated college and was hired for my first teaching job, I felt like I was just getting fatter by the second. I looked 4 months pregnant and didn’t know why. Lo and behold…another ovarian cyst. This sucker was the size of a soccer ball! They took the right ovary in emergency surgery and again…cleaned up a lot of endo. They told me that there was so much scar tissue and adhesion that they couldn’t get it all. My left ovary was “glued” to my pelvic wall, hip, bowel, bladder, and who knows what else..

Doctors, and Nurses, and Kinesiologists…OH MY!

My last surgery was in 2011. Since then my pain has worsened, my stomach/GI tract has developed an assortment of awful symptoms, I have monthly bleeding (that sometimes lasts weeks), migraine headaches, vertigo, diarrhea, vomiting…you name it! I’ve been to every doctor in the area. I’ve been to Cleveland Clinic (which was a wasted trip, but it’s ok because I LOVE CLE!). The only small bit of relief I got from any of it was visiting a chiropractor who specialized in kinesiology on a regular basis. That lady was an angel sent straight from heaven…then she retired!

Almost 2 months ago I woke up feeling the worst pain I’ve ever felt. EVER. Childbirth included (and you just read how great of an experience THAT was for me). I called into school and couldn’t even do sub plans. My dad took my kids to school and my mom rushed me to the ER (thank GOD for parents who live close by). I spent my entire morning in the ER and they found nothing. As suspected. It was endometriosis flaring up. *side note-I was drinking 3-5 coffees a day the week prior. Coffee and endo don’t mix.

When I got home that day I spent HOURS searching the internet. I’d searched before a million times and never found anything new. But this time…I decided to visit the website for the Center for Endometriosis Care. I’d been to the site before, but for whatever reason didn’t’ think it was for me. My best friend told me that one of her friends had surgery there and felt it was the best move she ever made.

I decided that I had to do something. Life like this is unbearable for me, my husband, my kids….hell, even the dogs suffer when mama is in pain! I filled out all 27 pages of paperwork, wrote a personal narrative of life with this disease, rounded up all my records and paid 7 bucks to send one big ol’ envelope to Atlanta! I heard from them when they received my files, and again a few days later when the surgeon called me. He was so kind and personable. He answered all my questions before I could even ask them! Right now I am in the process of getting insurance approval and then scheduling my excision. I’m really hoping to go in April over my school’s extended Easter break. *Be sure to read about that surgery here!

I’m hopeful that this surgery will be what it takes to get my life back on track! Don’t get me wrong…I am one lucky lady in every other aspect of life. But endo really puts a damper on a lot of things and I will be so thankful to see it go away once and for all!!

If you’ve read all of this….you need to go refill that coffee, I’m sure! But don’t drink 5 cups if you’re an endo sufferer. It won’t end well….trust me.

Xoxo

Jessica