Pain has always been a loyal companion. I don’t remember a time when I was without it. I’ve been chronically ill for 22 years, but lately, I mumble, 'I’m in so much pain,' more times than I have for all these years.
I started this year happy. My heart was stable and my rheumatoid arthritis was under control. I’d lived through the summer with minimal flares. Finally, I could plan my life, which is something you can’t do with chronic illness as it can be unpredictable. You could wake up ready to conquer the world and by midday, you can barely walk.
I took the picture above on the 3rd of February after my morning jog. I didn’t know then that I would get sick the following week and struggle to walk two weeks after.
I had menstrual cramps a week before my periods started. It was nothing abnormal, especially after my exploratory laparotomy in June last year. The difference this time was fatigue and stabbing pain in my C-section scar. During my morning jogs, my legs were heavy and couldn’t carry me like before. The pain was unbearable.
I had my period for 4 days with less blood and more pain. Usually, the pain subsided after the periods, but this time it got worse each week. I worried that I might be the ovarian cyst doctors found last year. I went to the doctor, and he sent me to the hospital.
“We don’t know what it is yet. It could be PID (pelvic inflammatory disease),” the doctor said. My gut told me it was something else. I took the medication for the prescribed two weeks and went back to the hospital in more pain than before. I was sent to another one.
I could barely walk when I got there. Doctors ran tests and nothing came up. My stomach was growing bigger. I went for an X-ray, which showed that I was constipated. I had a normal bowel movement, so constipation was a surprise. They sent me home the following morning, with pain medication, sleeping pills and irritable bowel syndrome (IBS) medication.
Two weeks later, I went to the local clinic for my contraceptive refill. They put me on them to manage the ovarian cyst last year. The nurse called an ambulance as I was in absolute agony. I didn’t want to go to the hospital because I wasn’t getting help there. He insisted. At the hospital, the doctor did a quick ultrasound scan and saw nothing. I was defeated. I felt like no one was taking my pain seriously. No matter how much I explained and groaned, there was no help.
I went back again. The doctor I saw that day suspected fibroids based on my explanation of the pain. She did an ultrasound scan and found a 2cm cyst. A month thereafter, I went for a formal ultrasound scan. The ovarian cyst on the right was 6,6cm, and on the left, it was about 5cm. The doctor said something else and not the cysts, caused the pain and gave me paracetamol.
Another scan, two weeks later, showed that the right ovarian cyst had grown to 13,5cm and there was a 5,5cm complex cyst in the midline. I wanted the doctors to remove all of them so things could go back to normal.
In June, four months after countless hospital visits and living with excruciating pain, I had a diagnosis, endometriosis. Endometriosis is a disorder in which tissue similar to the lining of the uterus grows outside the uterine cavity. The lining of the uterus is called the endometrium. Endometriosis occurs when endometrial-like tissue grows on your ovaries, bowel, and tissues lining your pelvis.
As the doctor explained, a lot made sense. My period pains got worse with each period. I had pain and bleeding after sex. Although I didn’t bleed a lot, the pain was abnormal. I had always dismissed the pain as normal. I was put on contraceptives again.
For months I struggled to sit for longer than 10 minutes, stand for longer than 5 minutes, to sleep. There were nights when I wouldn’t be able to sleep on the sides. Each time I went to the loo, it felt like something was pulling apart my uterus and ovaries and putting needles in them. I struggled for so long without knowing what was wrong. With all that, I still had to show up, be a mother, write exams, and try to cook.
I’ve been on the pill for two months. It has made a difference. I can walk a little faster now, but not for long. I can sleep through the night. Endometriosis has complicated my life. I’m more fatigued than ever. There’s so much that I can’t do anymore. I’m still in disbelief that I went from running 7kms every other day to barely walking in a matter of weeks…
I read up on endometriosis to find ways to manage the pain and comfort that one day it will be better. The stories from other sufferers broke my heart. There is no better. From women who had multiple surgeries to women who are still trying to find answers, there is no better. I’m in pain most of the time. I didn’t know what labour pains felt like until I had this. Imagine going through that every day, sometimes all day. I want to start a support group for all endometriosis sufferers. We could meet via zoom and cry our eyes out because WHAT THE F% $#! is this disease?
Life is harder now, but I’m happy that even though I live with pain, my flare-ups are less intense. I just wonder if I’ll ever be able to tie my shoelaces without pain, chase after my son around the yard, and spend a day without any pain.