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What It Feels Like to Have Endometriosis

My periods left me bedridden and my doctors didn’t understand why.

Imagine how it’d feel to have 100 sharp knives piercing your abdomen. Bleeding heavily, not knowing when it’ll end. Feeling so fatigued that everyday tasks like food shopping become completely overwhelming. Eating, going to the bathroom, sleeping, being intimate with your partner or even buttoning your pants seems to be 100 times more painful for you than anyone else you know.

This was my daily life for about 10 years, and I didn’t know why.

Crippling Pain, Surgeries, Trouble Conceiving; But No Diagnosis
I started having diarrhea and painful cramping when I began menstruating at age 15. As I entered college, the symptoms got worse. My pain and stomach upset intensified. I was diagnosed with irritable bowel syndrome and told that anxiety was causing my health issues. My instinct told me that something was wrong with my body, but how could I argue with my doctor when every single test showed that nothing was wrong? I felt helpless and overwhelmed.

In my early twenties, I started having pelvic pain throughout my entire menstrual cycle. To get relief, the doctors recommended I have my appendix removed and later my gallbladder removed. I didn’t understand why my body kept failing me.

After my appendix was removed, my husband and I decided to start a family. After a year of no success, I worked up the courage to talk to my gynecologist about our trouble conceiving and my worsening periods. I knew something was terribly wrong.

You just have a low pain tolerance and you’re too young to have infertility issues, said my gynecologist.

My faith in healthcare professionals began to wane. My husband and I were already feeling the hopelessness and helplessness that comes with the weight of infertility. My years of feeling sick caused me to lose faith in my own body. I didn’t listen to that doctor. Instead, I advocated for a referral to see a reproductive endocrinologist.

Endometriosis: A Disease I’d Never Heard Of
After much testing and no definitive results, my reproductive endocrinologist suspected endometriosis. Endometriosis is a disease in which tissue, similar to the uterine lining, is found throughout the pelvic cavity, including the bladder, bowels, appendix and ovaries. The tissue, which reacts to hormones, implants itself and causes an inflammatory and painful response from the body. Many people with endometriosis develop adhesions, and organs can get stuck together or to the pelvic wall, causing even more pain.

I’d never heard of this disease, but I recognized these symptoms:

  • Excruciating menstrual cycles
  • Relentless bowel issues
  • Frequent urination
  • Painful intercourse
  • Chronic fatigue

After a diagnostic laparoscopy, I finally got the right diagnosis: I had endometriosis. My doctor used the ablation technique to burn, or remove, the disease from my ovaries, uterus and bladder. He assured me that he got it all—he didn’t.

You don’t have severe endometriosis and you should be able to get pregnant naturally, he said. He assured us that this surgery was the fix we needed to conceive. I was sad, but not surprised when months passed and we didn’t conceive naturally.

I ended up needing intrauterine insemination to conceive my daughter. After she was born, we tried to conceive again, but couldn’t. The next couple of years resulted in multiple miscarriages and failed fertility treatments.

All the while, my body felt like it was getting sicker and sicker. My periods left me bedridden. My abdomen swelled. My bowel movements were excruciating. My reproductive endocrinologist told me if I got pregnant my endometriosis would improve, but all of my pregnancy attempts failed. I felt like I was failing at parenting because I was so sick all the time. I became socially isolated because I was too sick to leave the house. My husband and my family were worried about my health. I was worried, too. It was frightening to feel this debilitated and not have a feasible plan in the works to get better.

Was I destined to feel this sick for the rest of my life?

Cutting the Disease Out of My Pelvis and Organs
After extensive research, I learned a few things. First, pregnancy doesn’t cure endometriosis. Second, the ablation surgical technique used to remove my endometriosis, likely left a majority of the disease in my body. And the two surgeons who removed my gallbladder and appendix to relieve my pain? They both overlooked the adhesions and endometriosis I had throughout my pelvic cavity. I was so angry that my severe endometriosis could have been diagnosed back then. Years of physical and mental anguish could have been avoided had I been diagnosed sooner.

After examining me and listening to my symptoms, my new doctor, Tamer Seckin, MD co-founder of the Endometriosis Foundation of America, suspected that I still had a significant amount of endometriosis remaining in my body that was not removed during my previous surgeries. Dr. Seckin practiced the excision surgical technique, a method of cutting all of the disease out of my entire pelvis. Within the span of two years, Dr. Seckin performed two endometriosis excision surgeries on me.

Excision surgery freed not only my organs from adhesions; it freed me from a life of crippling pain. I regained a quality of life that I didn’t think possible. I felt hopeful again. I could be a mother, wife, daughter and friend in ways that made life fulfilling again. The depression and anxiety that came with feeling sick and being isolated slowly lifted.

Chronic Life Means Constant Vigilance
Endometriosis is a chronic disease. There’s no cure. I have to watch my energy level closely to ensure I don’t overextend myself. I still suffer from pelvic pain during my period and have ovarian pain at times.

As a social worker, I provide emotional support to people experiencing endometriosis and infertility issues. Anxiety and depression are common experiences for many patients. They suffer chronic pain and a loss of quality of life. To complicate matters, many patients spend years being told by the medical community that their pain is just in their heads.

Be Your Own Health Advocate 
It’s important for people with endometriosis to reach out and connect with each other; understand that you aren’t alone. Be a fierce advocate for your own health. My tenacity to keep researching and questioning doctors when they dismissed my symptoms helped me get the answers and care I needed.

Endometriosis has taught me about determination, strength and grace. It’s my hope that as more people talk about their experience with endometriosis, we can increase awareness and come together as a community to fight for increased research and better treatment options.

Casey Berna is a licensed social worker with years of experience as a counselor, advocate and community organizer. She counsels patients living with endometriosis and infertility in North Carolina. Berna runs patient-support groups through her affiliations with RESOLVE and EndoWarriors. Last year her documentary, Endotruths: The Impact of Endometriosis and Infertility on Mental Health, debuted at The Unmentionables Film Festival in New York City.

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