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From Pain to Progress: Navigating Endometriosis and Toasted Skin Syndrome

At the age of 16, I first sought medical care for abdominal pain and discomfort. Despite tests revealing normal results, I was informed that women sometimes experience pain. Throughout the years, I adjusted my lifestyle, incorporating exercise, modifying my diet, sitting only when necessary, and relying on painkillers—anything to cope with the persistent pain.

By Spring 2022, the pain had intensified, spreading to my upper abdomen, necessitating constant management. Activities I once loved, like running and playing sports, became increasingly challenging, forcing me to spend more time at home. Hospital and doctor visits escalated, and it was during this period that I introduced a heating pad as part of my pain management routine.

Following numerous tests, antidepressants were recommended due to stress, as no evidence of pain or gastrointestinal issues was found. The term “Endometriosis” emerged for the first time, but many, including my doctor, family, and parents, believed the pain was psychological. Amidst this, I married my childhood best friend. Despite skepticism, I insisted on checking for endometriosis. Various pain relief methods, including Advil and Tylenol, proved insufficient. Birth control had no effect, and using a heating pad with increased heat options led to rashes and red skin.

After four months and no relief from ablation surgery and birth control, a hysterectomy was proposed as the only viable option. Although the surgery was intended for excision, it was discovered that the endometriosis was minimal, not deep enough for excision. Seeking alternative answers, we eventually found our way to Dr. Nezhat.

During those agonizing months, I lost the ability to engage in my favorite activities, and my teaching job came to an end. Pain dictated my life, with two weeks of every month spent confined to bed. Periods were excruciating, and at times, nurses had to hold me down for injections. Fearing addiction and limited options in Canada, doctors hesitated to provide long-term solutions.

To cope, I resorted to constant heating pad use during sleep and while sitting. The burns it caused offered relief, preferable to the relentless pain. Despite concerns about harming my body, I continued, exploring additional heat sources like a microwave wheat bag. The goal was to reduce reliance on painkillers.

Tylenol 3, a heating pad, and CBD became my lifelines, as I struggled through menses and ovulation. By the time we traveled 3000 miles to see Dr. Nezhat, his webpage became a vital resource amid widespread misinformation about endometriosis. I express gratitude to him for tirelessly raising awareness of this debilitating disease.

In Dr. Nezhat’s care, I found reassurance. He offered the time I needed, assuring me that he believed every word about my pain being real, not a figment of my imagination. That night, tears of gratitude flowed freely. I often pondered, “What doesn’t feel wrong with me?”

Surgery day provided answers, even to the stabbing upper abdomen pain dismissed by many doctors. Surgical pain subsided on the same day, and my constant high-heat heating pad use reduced to the lowest setting. At 4 weeks post-op, the road has been challenging, with fluctuations in pain. However, I’ve enjoyed time with my family without forcing myself, even during menses. “Five Tylenol a day was a very good day” has transformed into “I didn’t feel the need to take painkillers today.” Laughter replaces tears, dreams replace pills, and, most importantly, the joy of being active has returned!