DISCLAIMER: The following post outlines the writer’s personal medical journey with endometriosis. It is not intended to act as medical advice. As always, please consult your doctor with any questions about your health.
According to the World Health Organization, 1 in 10 women will have endometriosis and there is currently no cure. Growing up, I knew what endometriosis was because my mom had it. She was diagnosed as a teenager and doctors were amazed when she was able to conceive in her early twenties. She found out she was pregnant both times by pre-surgical screening. By age 39, she had undergone countless surgeries and it led her to having a hysterectomy and her ovaries removed.
The Mayo Clinic defines endometriosis as when the tissue that is supposed to line your uterus is found outside of the uterus. When you have endometrial tissue where it doesn’t belong, the excess tissue has no way to exit your body. The Cleveland Clinic states that endometriosis can only be “officially” diagnosed through laparoscopic surgery.
Endometriosis symptoms also can affect your sexual health, your bowels, and your bladder functioning, among other areas. It can really impact many parts of your life. This is why today, I’m sharing about my personal journey to a diagnosis and what’s next for me as I navigate having endometriosis.
My Story of Endometriosis
I started taking an oral contraceptive bill at age 15 and didn’t have any issues. I finally went off of an estrogen-based pill when I was in my early thirties and starting a family with my husband. We had no issues–I delivered three girls in three calendar years. With our third being a C-Section, I opted for the tubal ligation at the same time. We knew our family was complete.
Finally, after three decades of synthetic estrogens, my body started to produce its own estrogen. That is when my symptoms began–symptoms that greatly affected my quality of life. I began having issues with my bladder and bowels. I was referred to Gastroenterology and Urogynecology. By the time I started seeing Gastroenterology, I had begun using an app to track my symptoms (yes, I recorded every bladder and bowel movement for over six months).
An interesting pattern emerged.
While I was pre-menstrual and menstruating, my bowels would not move, resulting in me in the ER just for them to make me have a bowel movement. Horribly unpleasant and TMI, I know, however, these are the things that get missed when you have endometriosis and doctors instead go to a diagnosis like Irritable Bowel Syndrome.
Years of testing followed; everything from a colonoscopy to a defagrophy (google it) were performed. When I first suggested to my OBGYN that it might be endometriosis she didn’t think it was. However, she did put me on hormones to suppress my period because that’s when I was most symptomatic. I had two more highly trained OBGYNs tell me that they didn’t think it was endometriosis either.
So, I went back to the surgeon who treated my mother for a second opinion.
He was ready to do laparoscopic surgery if my doctors wouldn’t. My PCP advocated for me through the entire process; however, getting into the specialty clinics where doctors with the expertise to diagnose endometriosis is a waiting game. According to Yale School of Medicine, most women with endometriosis wait up to 10 years before they are diagnosed. My mother taught me that “the squeaky wheel gets the grease,” so I fought hard and a pelvic MRI was ordered.
This past September, the pelvic MRI confirmed that I did indeed have endometriosis.
The validation I felt seeing the words “Deep Infiltrating Endometriosis” on the report is a feeling that I can’t describe. Finally, I would receive treatment for what has been causing so much dysfunction in my life for over five years. Yet at the same time, I also felt doomed in a sense, because there is no cure for endometriosis. And because endometriosis is largely thought to be a genetic disorder (according to The Cleveland Clinic), my heart broke for my three girls that they might someday have to travel this road as well.
I am still shocked at the myths regarding endometriosis.
The Mayo Clinic has a full list of endometriosis symptoms to watch for. Your period is not supposed to be painful–while some cramping is expected, if you need to stay home because of the pain, go see a doctor. If sexual intercourse is painful, go see a doctor. If you begin to have bowel and bladder issues, go see a doctor. And when you see a doctor, ask about whether or not it could be related to endometriosis. If you believe it could be, don’t stop when the first OBGYN says, “Nah.” According to the Society for Women’s Health Research, most OBGYNs and primary care doctors don’t receive adequate training on endometriosis so it’s so important to speak up.
Treatment options vary depending on your age and your desire to be fertile and range from oral contraceptive pills or IUDs, but most involve surgery. Find a surgeon that listens to you and what your future plans are regarding having children. It’s not impossible to have children with endometriosis; my brother and I are living proof. But it may make your journey more complicated, so reach out for support.
Treatment with oral contraceptive pills has not been successful to manage my symptoms, so I am having surgery this month. It took nearly eight years of my “squeaking” to get me to this point, so I am trying not to get my hopes up too high for this first surgery. I do know doctors will have a much better understanding of my endometriosis once they actually see it.
If you’re navigating endometriosis, the following websites have great information and ways to be in community with other women who are suffering.
It is important to start talking about this with our daughters early, in order to prevent another entire generation from enduring this hardship.
Most importantly, know that you are not alone.
