Additional Coverage:
- My Pain Was Dismissed By Four Gynecologists, Until I Asked These Questions. This Was My Journey to Getting Diagnosed With Endometriosis. (momswhothink.com)
A Long Road to Diagnosis: One Woman’s Journey with Endometriosis
Painful periods have been my unwelcome companion since I was 11. What started as typical period discomfort quickly escalated into debilitating monthly experiences.
Heavy bleeding, body aches from head to toe – this was my “normal.” As I got older, the pain morphed, sometimes feeling like electric shocks in my abdomen, other times a dull ache radiating down my legs, or a deep, persistent back pain with cramps snaking up my sides.
The inconsistency was maddening. Add to that the bloating, headaches, burning sensations, fatigue, and leg cramps that joined the party in my 30s, and the pain even between periods, and I knew something was seriously wrong.
My first gynecologist visit after high school was terrifying. I downplayed my symptoms, mentioning only the excessive bleeding.
Despite this red flag, a normal pelvic exam led to a quick dismissal and a prescription for birth control pills. While the pills helped with the pain, they turned me into an emotional rollercoaster.
A couple of years later, I returned, this time requesting an IUD. My doctor’s indifferent response did little to inspire confidence, but I was desperate.
The IUD insertion was excruciating, and my doctor’s impersonal “see you in two weeks” left me feeling abandoned. While the IUD eventually stabilized my moods and lessened my period symptoms, a post-insertion cyst and blood in my urine (hematuria) were brushed off as potentially nothing.
This dismissive attitude, coupled with the doctor’s visible annoyance at my questions, sent me searching for a new physician.
My second doctor, thankfully more compassionate, suggested PCOS as a possibility and recommended sticking with the Mirena IUD due to my smaller uterus. While this doctor had a better bedside manner, she left the practice before we could delve deeper into my PCOS concerns, leaving me with more questions than answers.
The mental and emotional toll of undiagnosed pain is a heavy burden. It’s a lonely experience, exacerbated by societal expectations for women to silently endure.
This is the backdrop against which so many women are misdiagnosed or dismissed. I persevered, documenting my symptoms meticulously in a journal.
By the time I saw my fourth doctor, I was armed with a detailed list of over 25 symptoms spanning a year. While this doctor acknowledged the possibility of PCOS and suggested adding birth control pills to my IUD regimen, it felt like another band-aid solution.
Basic blood work, without a hormonal panel, further delayed a proper diagnosis.
Finally, after three years with my second IUD and escalating symptoms, I found my fifth gynecologist at a women’s health clinic. The difference was immediate.
Their thorough intake process and genuine concern made me feel seen and heard for the first time. During my appointment, my doctor suggested endometriosis as a more likely culprit than PCOS.
Hearing those words was a revelation.
Several key questions helped unlock my diagnosis. Asking why my period pain was so severe and persistent, coupled with the timeline and nature of my pain (occurring outside of my cycle), pointed towards a physical rather than hormonal issue.
Further questioning about the ineffectiveness of my birth control, specifically the IUD, and the specific type of pain I experienced (like bloating, or “endo belly”) provided more evidence. Finally, discussing my family history of difficult periods, even without a formal endometriosis diagnosis, added another piece to the puzzle.
A comprehensive blood panel revealed normal hormone levels, ruling out PCOS. My doctor explained that endometriosis, a condition where tissue grows outside the uterus, can cause widespread pain and inflammation.
This explanation, combined with the other factors, led to my suspected diagnosis. My journey underscores the importance of finding a doctor who listens, validates your experiences, and is willing to explore all possibilities.
It’s a journey no woman should have to take alone.