The path to a diagnosis: Endometriosis and its “evil cousin” Adenomyosis

April 24, 2023

By Savannah Alvarez

Savannah is a Graphic & Web Designer on WCH’s Strategic Communications team and is a former gynecology patient at WCH. Having dealt with endometriosis and adenomyosis for most of her life, she shares her account of the diseases and her path to a diagnosis for Endometriosis & Adenomyosis Awareness Month.

Since I was young, I knew I was different. Frequent bladder infections, urinary tract infections and general pelvic pain from the age of six set me apart from the rest of my friends in a negative way. At six years old, I had the first of my infections but by the end of that year, I had developed a cycle and pattern. Every month, I was taking rounds of Amoxicillin for one to two weeks at a time, dealing with recurring infections and in the hospital every few days, every month, for about a year. I was in the hospital so often, describing and indicating my pain on diagrams to doctors, that I had learned all the names of my reproductive organs by age seven.

At this point, I was having biweekly hospital appointments where I had ultrasounds, blood work, urine samples, blood pressure tests and a general exam. These routine appointments kept my infections manageable until I had my first kidney infection. I remember the pain feeling like a shovel digging into the back of my left kidney, and the pain was so intense I fell over.

By age 10, I got my first period and things took a turn for the worst. I had extensive blood loss and fainting with my first period, and pain that felt like a knife in my abdomen. My period was so heavy I kept bleeding through sweatpants onto the seat of the car. The blood loss caused cold sweats and the contraction-like pain in my abdomen that eventually led to fainting spells. When rushed to the hospital, I was met with a lack of understanding and was told “this is just the beginning of your life as woman.” I internalized this message, feeling like I had a low pain tolerance and that I couldn’t handle my menstrual cycle like my friends could. Despite numerous pain medications, vomiting from pain, cold sweats and needing IV fluids, I was dismissed at the mention of my first period.

By age 11, my menstrual bleeding was so severe that that I was bleeding through multiple pads in under an hour. But I was still too young to advocate for myself or to understand that there could be a cause to all this pain and bleeding. I was told it was normal, that the pain was just cramping, and that this is what periods were supposed to feel like. I missed out on so many milestones over the years due to the pain; I missed my tenth grade dance, my prom and endless special events. I took more trips to the hospital than anywhere else.

The pain began to get worse, with my body writhing from contractions – similar to birthing contractions – and my pelvis would pulsate; I couldn’t even move to roll over. Nothing I did or took made the pain go away or the bleeding lessen.

It wasn’t until I was 14 that I was referred to a gynaecologist at Women’s College Hospital (WCH) who finally took me seriously. I was prescribed birth control – which was a life saver for controlling some of the pain and bleeding – and was given an ultrasound. During the ultrasound, it was found that I had one golf-ball sized cyst on my right ovary as well as 13 smaller ones. At this point, armed with a sympathetic gynaecologist and my own research, I began advocating for myself. I saw multiple doctors and investigated what illnesses could cause my symptoms.

I was misdiagnosed six times – first with interstitial cysts, then dysmenorrhea, vaginismus, pelvic inflammatory disease and generalized pelvic pain – before finally receiving an endometriosis diagnosis at age 20. By 23, I was diagnosed with adenomyosis – often referred to as the evil cousin of endometriosis – through a transvaginal ultrasound that found my right ovary stuck to my pelvic walls from adhesions, and my utereus was full of chocolate cysts and adhesions.

It took me 10 years to finally receive a proper diagnosis, the average time it takes for someone to be diagnosed with these particular reproductive diseases. Endometriosis causes lining similar to that of the lining in the uterus to grow outside the uterus and on the fallopian tubes, ovaries and other reproductive parts; adenomyosis causes this lining to grow inside the uterus, which can only be cured by a hysterectomy. Both illnesses make life difficult, from the excruciating pain interrupting so many aspects of life to the toll it takes on your mental health.

After my gynecologist at WCH first put me on birth control, I realized how much more to life there was with these diseases. Since getting my diagnosis and managing symptoms with birth control and other at-home remedies, I have been fortunate that my endometriosis and adenomyosis don’t always manifest in the ways they used to, but they still impact my daily life. The symptoms still cause me to miss work or not be able to leave bed, to rethink going out certain places and to plan ahead for flare ups.

Adenomyosis and endometriosis can be the thief of joy in many ways because they prevent the ability to live life to the fullest. I am so grateful for the doctors who listened to me and understood me, starting at Women’s College, and the family and friends that support me on a daily basis. With the right diet and lifestyle changes I am able to get up and face every day, no matter what it throws me.