autoimmunedisease · chronicillness · endometriosis · guestpost

Endometriosis – My Story

What is life like with Endometriosis? 

Jessica, From Mrs. Pennington For You Thoughts, tells her story here.

Hello! I’m Jessica from the Mrs. Pennington for Your Thoughts blog!

I was so excited when Lucy messaged me and asked if I’d share my story about life with endometriosis! I started blogging specifically to share my story and get the word out there about this under-recognized terrible disease that affects 1 in 10 women.

Chances are you have met someone with endometriosis, have heard of it, of even have it yourself. Endometriosis isn’t a clear and concise disease that hits everyone the same. There are 4 stages of endo, but the stages really have no correlation to a number of symptoms a woman may feel. I have Stage IV endometriosis and have (unfortunately) had a pretty unique experience with it, which is why I’m here today! I don’t want any woman, young or old, to think that excruciating pain and a host of other symptoms are “normal” or that they’re crazy. Both of these comments were said to me in the beginning of my journey.
Speaking of the beginning, let’s take a trip down memory lane. I started my period when I was about 10 years old. It was most irregular, like most young girls. Once I started having monthly periods, they were horrendous: cramps, bloating, heavy bleeding, passing large clots. I was told that this all was normal for girls my age.
As I got older and reached my late teens to twenties, the problems only escalated. I still had all the same symptoms, but also had the joy of vomiting, fevers, rectal pain, and extreme fatigue. I had been to multiple doctors and was brushed off. It was normal to feel this way they said. I even had a doctor tell my mother that I was “hysterically dramatic” and needed to “adapt to the ways of being a woman”. In my early twenties, I was diagnosed with appendicitis during a bout of incredible pain. My doctor was “old school” and wanted no scans—just immediate surgery.
I’m forever grateful for that man. While in surgery for an appendectomy, an ovarian cyst was found. This in itself was nothing new as I’d had cysts often. A wonderful OBGYN was in on my surgery and finally could tell me what was causing all of my issues: stage IV endometriosis. She explained to my mother that what I had been feeling every.single.month was comparable to childbirth.
Over the past 15 years, I’ve had multiple surgeries, including an emergency hysterectomy immediately following the birth of my second son. Endometriosis had ruined my uterus and caused it to rupture during my intense contractions. Waking up to hear that I’d had a hysterectomy was music to my ears! I’d always heard this was the answer to ending endometriosis!
Hysterectomy, however, was not the answer. I only continued to decline health-wise. The pain increased. Each month brought rectal bleeding, fevers, diarrhea, and a period. That’s right—a period after a hysterectomy. The 25th of each month or so all hell would break loose and I’d be reminded of the disease that had taken over my life. As time went on it wasn’t just a once a month ordeal. Symptoms were increasing with seemingly no rhyme or reason.
After an ER visit last December, I began to research. I Googled for hours. I came across the Center for Endometriosis Care in Atlanta. Dr. Sinervo, the lead surgeon there, was highly acclaimed. I couldn’t find a single bad review of this man on the internet. (How many people can say that?!) He was known for performing endometriosis excision surgery. I began the process of becoming a patient at the CEC and never looked back.
April 11th, 2017 I underwent excision surgery with Dr. Sinervo and Dr. Kongoasa of the CEC. I woke from anesthesia to the news that they’d found stage IV endometriosis in various spots in my body. I had many adhesions as well. My left ovary adhered to my hip, my omentum, umbilical tissue, and my bowels. I had endometriosis on my vaginal wall, as well as my rectum. Most devastating, though, was that endometriosis had deeply infiltrated the wall of my sigmoid colon. There was beyond a 50% blockage of the colon. A 6-inch section of the colon needed to be respected.
It has been nearly 3 months since I underwent my excision surgery. Excision is known as the gold standard of endometriosis treatment. If you compare it to weeding your garden—excision is like pulling the weeds by the roots versus just mowing off the top. Recovery has had its ups and downs. Some days are fantastic, while others are spent in bed. Pelvic floor physical therapy has become a big part of my routine. With a bowel resection in the sigmoid colon, the central nervous system is impacted so recovery involves a lot of “reprogramming” of that system!
While I’m not 100% yet, I’m told that I can expect my new normal in the next few weeks to months.
The journey with this disease has been no walk in the park. If there is one thing I’ve learned, though, it is that we have to advocate for ourselves. Never stop until you feel that you’re receiving attention and treatment that you deserve! Feeling the unexplained pain and experiencing other
symptoms I’ve mentioned is NOT normal. You are NOT crazy or dramatic. Seeking out the very best care you can find, and not stopping until you’re satisfied will help you find your healthy, happy ending!
If you or someone you love happens to be struggling with endometriosis, please don’t hesitate to visit my blog and hit that contact button! I love to help others on their journey with this disease.
XoXo
Jessica
If you loved Jessica’s story and want to know more, you can follow her on her social media and her blog below. 

Leave a Reply