I’ve struggled with endometriosis from the age of 11. I very distinctly remember trying to walk home for lunch in the eighth grade, and being struck with abdominal pain that was so intense it doubled me over and stole my breath. The block walk from the school to my childhood home seemed absolutely insurmountable. To this day, I’m not sure how I got through the walk home.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
I also remember having to leave my best friend’s birthday party early the same year due to crushing abdominal pain. It was absolutely sickening pain. I ended up at the ER again, and was sent home with a shot of meperidine and a diagnosis of “sometimes these things happen.”
By ninth grade, there were months where my period would last for 28 days, with a seven-day break between cycles. I quickly learned to keep an “emergency kit” in my locker, including a complete change of clothes, feminine hygiene supplies and extra strength Midol. I absolutely lived in fear of a “blow out,” because when you’re bleeding as heavily as I was, a leak wasn’t an embarrassing splotch on the back of my pants, it would go down my legs and up my back. Several times during my time in high school, I’d nearly resemble the bloody prom scene in “Carrie.” OK, maybe that’s an exaggeration, but trust me, it was freaking gross, and very embarrassing.
I went to my GP several times, and was met with apathetic responses like: “pain is a woman’s lot in life” (yes, really), “you’re being overdramatic” and, my favorite suggestion, that I should seek psychological help for my “attention-seeking issues.” Though my mother tried to fight for me, she didn’t have the power to force someone to believe what was happening. I was overtly dismissed time and time again by a male doctor who just didn’t get it, and didn’t care to try.
After several years of this, I met the man who was to become my husband. When he gently asked me if I’ve sought help for my abnormal bleeding and pain, he was disgusted to find that I had, repeatedly, and with no answers. He then instructed me to book another doctor appointment, to which he would accompany me. At that time, I really was not good at advocating for myself, so all 6 feet 3 inches of my hulking husband accompanied me to the doctor, and outright told him he was sick and tired of me crying in pain, and nothing was being done about it. It was then that I secured my referral to an OB/GYN.
I walked into Dr. Amimi’s office that day expecting more of the same. I had no idea I was going to meet the doctor that I credit with saving my life.
I sat in the exam room while we went over my medical history, and had a pelvic exam. After I was dressed, Dr. Amimi sat me down, looked into my eyes, and said the three words that would change my life: “I believe you.” She went on to explain that she thought I had a condition called endometriosis, and it was essentially the lining of the uterus growing in my pelvic cavity, which bled with hormonal changes, thus causing intense pain. She also explained that the only way to accurately diagnose endo is with a laparoscopy. I agreed, and due to a lucky cancellation, was booked in for surgery 12 days later.
At my follow-up, I discovered that I did in fact have both endometriosis and adenomyosis, and then started my journey to find a treatment that worked. I tried many different treatments – oral birth control pills, varying levels of a birth control shot, a drug that works to temporarily relax the uterus – everything that was available at the time, as I was diagnosed in 1998, when treatment for endo was basically only surgical and hormonal therapy-based.
When I struggled with infertility, Dr. Amimi was there. She held my hand while I cried, and promised to do everything she could to help us conceive. Several surgeries later, I was pregnant. I was horribly sick, but grateful for the chance to be a mum. I’m not sure who was happier, Dr. Amimi or myself.
Three years after my pregnancy and delivery of my son, I still struggled with very heavy bleeding and intense pain, and knew I wanted no more kids after a rather traumatic labor and an emergency C-section (which was performed by the doctor on call). At this point, I was using adult diapers instead of feminine hygiene products. Dr. Amimi listened as I cried and begged for a hysterectomy. She explained that as I was 27 at the time, I had to go through an approval process. Once I saw a second OB/GYN for a second opinion, and a urologist to rule out bladder pain, who both gave a green light, my approval process was complete, and I was booked for surgery.
I had my uterus and cervix removed, and distinctly remember telling Dr. Amimi when she was doing post op rounds that I felt so much better already. I rarely used the pain pump, because I felt I didn’t need it. Pain after an invasive abdominal surgery felt better than I had felt every single day.
When I was struggling with full body pain and was again dismissed by my GP, it was Dr. Amimi that I went to, even though she is an OB/GYN, and again, I heard those words – “I believe you.” I was subsequently diagnosed with fibromyalgia. When I went to her after a very emotional night in the ER due to a breakdown caused by anxiety, it was she who referred me to a psychiatrist for diagnosis of general anxiety disorder and panic disorder, as the hospital left me with a prescription for lorazepam and sent me home after determining I was not a danger to myself or others, even though I was far from stable.
When I went to see her for a yearly check-up, and she saw that I was still struggling with a shoulder injury, it was she who referred me to a surgeon, not the doctor I was seeing for my EDS, who preferred to adopt a “wait and see” approach, along with expensive prolotherapy shots. It turned out that surgical intervention was the only thing that would help, as I had calcium in my rotator cuff that had crystallized, and would never dissolve. When I added my diagnosis of hypermobile Ehlers-Danlos syndrome to my chart at her office, she apologized for not catching it. The thing is, she tried. After a severe wrist injury due to a fall, she asked me if I fell a lot, and I answered in the negative, even though I did. I guess denial is not just a river in Egypt.
I heard the words “I believe you” from Dr. Amimi over and over. I heard affirmation that I was very in tune with my body, and knew when things just weren’t right. Dr. Amimi singlehandedly taught me that every doctor appointment didn’t need to be a fight, because there are medical professionals who truly, deeply care about their patients, and their welfare.
When I credit Dr. Amimi as the woman who saved my life, I am not doing so lightly. No, she didn’t swoop in at the last minute and save me from a mysterious fatal disease – she saved me by believing me. It’s as simple as that. I don’t know where I’d be today had I not met her. I honestly don’t know if I’d still be alive. Living in crushing agony when doctors don’t believe you is a special kind of hell. It made me question my perception of pain, and after a while, made me question if I was mentally unsound, and actually causing my own pain, like my GP suggested. That is what I was saved from.
I was blessed the day I walked into that office as a scared 18-year-old girl, who didn’t know what the hell was happening to her. I am still blessed today, because I still see Dr. Amimi for checks on my remaining ovary. I know I can call her office for an appointment, talk to Jen who may be the most chipper and upbeat receptionist ever, and when I enter the exam room, hear those same words, “I believe you,” delivered in the same calm, confident, compassionate voice.
The gift of hearing those words is more precious than diamonds or gold. It’s the gift of knowing that someone cares, and is going to do their very best to help you.
That is the greatest gift of all.
Dr. Amimi, my life is the most precious thing I have. Thank you for saving it.
Getty Image by Rawpixel