This post was originally shared on my personal blog: Mrs. Pennington for Your Thoughts. I share my experiences with endometriosis in depth there! Drop by and say hey!
March is endometriosis awareness month! During the month, I’ll be sharing my experiences, some facts, and helpful information about living with endo. While you can find tons of information about my personal experience with endometriosis and excision in multiple posts (like here and here), I wanted to give you the “short” story all in one post to kick off the month of March!
In the Beginning…
I have suffered from endometriosis for over 20 years now, but my diagnosis came only about 12 years ago. I went in for an appendectomy and they discovered an endometrioma. Up until that time, I had been written off by more doctors than I care to count. One even referred to me as “a hysterically dramatic young lady who needs to get used to the ways of being a woman.” That being said, I was so thrilled when this surgeon explained to me and my mom that my monthly periods likely felt like childbirth, and they were NOT normal. (I’ve since birthed 2 kids with no drugs. I can testify that that surgeon was absolutely right.)
Things Got Ugly
I had my first son, and quickly had exploratory surgery and a laparoscopy to clear up endo. My OB/GYN told me that the odds of having another baby were slim, but there could be a chance if I went on birth control for several months and “tried like crazy” after 3 months. I started the pill, and wound up pregnant while on the first pack!
My pregnancy with baby number 2 was rough. My uterus was weak from numerous surgeries, and from endo and adeno. I was put on bedrest at 29 weeks, and delivered at 35. During delivery, my uterus actually ruptured, literally split like a banana peel. My baby was healthy as can be, but I nearly died. I lost over half the blood in my body. The only way they could save my life was to do a hysterectomy. I was left with only my ovaries, but I was grateful to be alive. And quite honestly, grateful to be rid of the endometriosis.
Or so I thought.
My ovaries were left intact, and they just kept on wreaking havoc. I had multiple cysts month after month at ovulation time. You’re not going to believe this, but I still had a period every single month. Cramping, vaginal bleeding, rectal bleeding, nausea–you name the endo symptom, I had it. No one believed me, much less explain it. I just accepted it as my normal.
I wound up in surgery again when my second son was 2 due to a soccer ball sized endometrioma. During that surgery, my right tube and ovary were removed. Again, I felt relieved that this might solve all my issues.
It didn’t.
I went for 7 years like that. Bloating, bleeding, puking, repeat. And let’s not forget the infamous pain. One day, I was in the shower and felt horrendous pain like never before. I passed out right as my husband was reaching to help me out of the shower. I rushed to the ER, where they had zero answers, of course.
That’s the day that changed my life.
I started researching like crazy. There had to be a solution. Somewhere out there, there had to be someone who would take me seriously. That’s when I stumbled upon the Center for Endometriosis Care in Atlanta. Their website had such a wealth of information that I could relate to. I finally felt like I’d found help–and I hadn’t even spoken to anyone there yet! Excision surgery was going to be my answer, I just knew it!
I filled out all of the paperwork needed to become a patient and mailed that to them, along with my medical records. The stack of papers was so thick it cost me $7 to send it standard US mail!
The rest is history.
The CEC called me and I spoke to one of their surgeons. He said that they’d definitely take me on as a patient. I quickly was contacted to schedule a pre-op appointment and my excision surgery. I was beyond excited to schedule surgery–the twelfth surgery is a charm, right?!
My husband and I flew from Ohio to Atlanta. On the day of surgery, my mom and best friend showed up as well! We were all so full of hope! My endometriosis has impacted all of us!
What the surgeon found was shocking.
I was in surgery for several hours. Upon completion, I was informed that I still had stage IV endometriosis. My left ovary was covered in about 15 cysts, and was “glued” to my hip, my omentum, my bowels, and bladder. This resulted in everything being pulled to my left side. During surgery, they removed the ovary. This left me menopausal and on hormone replacement therapy for the time being.
My bowels had deep infiltrating endometriosis and were nearly 70% blocked. I wound up needing a bowel resection, where they removed 6 inches of my colon. A large portion of my endo symptoms were digestion related, so this explained so much!
In addition, I was also diagnosed with moderate pelvic floor dysfunction. The doctor prescribed me pelvic floor physical therapy. I just recently was released from PT, but suspect I’ll be going back soon. It’s awkward, but is very beneficial!
Where I’m at today…
It’s nearly a year post-op. My monthly bleeding has stopped completely, my pain is minimal, and my digestion is a work in progress–but better! My life has truly changed for the better.
If I could provide any advice, it would be to stay positive. Be open to your options, no matter how “out there” they might seem. (I never thought I’d rave about the benefits of pelvic floor physical therapy! lol) Seek out healthy choices in life–remedies, grooming products, beauty products, and FOOD! Diet makes an enormous impact on us endo ladies, and as much as we might hate giving up some of our favorite guilty pleasures, it beats being in pain! Staying active is also huge for me. I do yoga every single day, and if I do skip, my body hates me. I love my essential oils as well, and they keep me feeling great!
A final word:
Don’t let your endo define you. It’s going to be a part of your life forever, and it’s easy to let it consume you. But you are so much bigger than this disease–even on the days you can’t leave your heating pad. There’s always a reason to smile and live a life beyond the endo.
