Chronic Illness warrior, Alyssa Baker, suffers from Endometriosis. Endometriosis is a chronic condition with no cure. Alyssa has added her face and story to Faces & Stories of Chronic Illness. I am so grateful that Alyssa has shared this, as each story told raises awareness and helps fellow sufferers.
You can connect with Alyssa by following her on Instagram.
To start my story, we must go back a little way. I started my period when I was 12 years old, and it was normal. A short three-day cycle and painless. As I started to grow up, I noticed my cycle began to get longer – turning into 5 or 6 days a month instead of three but still painless. By the time I was 15 I has cramps so bad I was missing 2 to 3 days of school a month. This was minor compared to what was coming. I remember bringing these cramps and the severity of them up to my doctor and having him tell me it’s normal to be crampy especially as a young girl and that I would grow out of it. Well he was dead wrong.
By the time I turned 17, I was missing one to two weeks of my life per month due to the pain. I could barely get out of bed, and when I did get out of bed, I was crippled, hunched over in pain. I knew I needed help but at the same time I still thought this was normal, and that all women went through this and that I would grow out of it.
I moved to Calgary, AB when I turned 18 for post-secondary. It was at this time that I started to seek medical attention. I saw 7 different doctors and 2 different gynaecologists, all who told me my pain was normal and that there was nothing to be concerned about. These same doctors prescribed me T3’s, Dilaudid, and a regular regimen of Advil and Aspirin for what they considered “normal” pain.
I finally took matters into my own hands. I made an appointment with my school physician and went into the appointment armed with knowledge. I walked into the appointment and told her I thought I had endometriosis and would like to be properly investigated and treated by a specialist. I lucked out as this doctor had suffered with endometriosis herself. She knew the pain and the struggle to get a diagnosis. She referred me to one of the best gynaecologists in Calgary and I waited. I found myself in emergency many times while waiting for that appointment, just needing pain relief.
This first gynaecologist was lovely. He did a diagnostic laparoscopy to look for endometriosis without me even having to ask for it. I remember waking up from surgery excited to finally have answers only for him to tell me that my insides were pristine and that there was no endo. I sobbed. I didn’t know where to go from there. I moved back home shortly after as my course had moved into a practicum component and I was placed in Saskatoon, SK (my hometown).
Back at home, I found myself in emergency every 3 to 4 weeks with this sharp, stabbing pain in my right lower quadrant of my abdomen. Every time I went in, I was investigated for appendicitis, but it was always negative. I just felt lost. My gynaecologist back in SK was awful. She basically told me I could go into menopause or she couldn’t help me.
On one ER visit, they found an inflamed fallopian tube. This got me admitted under one of the best gynae’s in the city. She worked out of the same office as my old gynaecologist so I asked if she would be able to see me instead and she agreed. Under the new doctor’s care, we agreed the best course of action would be to undergo surgery again and take another look around. Upon waking from this surgery, I was told I had extensive, stage III endometriosis covering much of my pelvic cavity. I breathed a sigh of relief. Finally, we knew what was wrong.
My symptoms got progressively worse after surgery, leading me to look for an endometriosis specialist in the US. This landed me in San Jose, CA under the care of Dr Andrew Cook. He was fantastic. Under his care, he was able to clear out the remaining endometriosis and give me my life back. Upon waking from that surgery, I felt better than I had in years. I was able to walk without crippling back pain and abdominal pain. It was bizarre.
This good feeling lasted for about a month until I tried to get an IUD, and everything got kind of screwed up. Since then, I have been working extensively with a pelvic floor physiotherapist, seeing my doctor and gynaecologist regularly, and working with pain specialists in different provinces.
My advice for those who are suffering, is to never stop advocating for yourself. You know your body. Fight for what you need. Switch doctors. Do your research. You know better than they do sometimes.
I know my endo will come back. I have some sneaking suspicions that it’s already started. But for now, I will live each day and just put one foot in front of the other.