My first period was the worst experience of my life. I was 13 and if we had known then that the excruciating pain I experienced was not normal and sought treatment earlier, I probably would not be in this pain today. Today, close to two decades later, I now know the pain I have lived with was as a result of endometriosis.
Somehow, I lived with the pain as my mum and grandma assured me it would go away as I grew older. They told me that once I got a child, the pain would subside. I managed to live with this unbearable pain until last year when my lungs collapsed.
I started having chronic chest pains and an endless cough. The pain would sharply start from my ribs going all the way up to my shoulder. I would run out of breathe but I always attributed it to the air conditioning from the radio studios as I was working in radio then. The intensity of the pain increased to an unbearable level and I went to hospital. The doctor immediately admitted me for a surgery on my lungs after the x-ray showed the collapse.
I was diagnosed with a pneumothorax and the doctor explained that I wasn't eating enough and that it is prevalent with skinny people. A few weeks later, the pain was back. I went back to the same doctor and the same surgery was done.
Simultaneously, my grandma was battling Stage 4 pancreatic cancer and we were in the midst of raising funds to cater for her treatment. I was on TV fundraising with yet another episode of collapsed lungs. As I was sharing my plight, a lady called Cindy got in touch with me and shared her experience. She had had 10 lung collapses. I was so shocked. That's when I learnt what had been bothering me. The lung collapse was a result of endometriosis otherwise known as thoracic endometriosis. Cindy referred me to her gynaecologist, a Dr Patel at the Aga Khan Hospital who diagnosed me with severe pelvic endometriosis which had spread to my chest.
I later had two other collapses, in total five collapses and five surgeries.
Misdiagnoses are quite common because most gynaecologists, especially in Africa have long ignored endometriosis to be a serious issue. Also, it was considered a Caucasian disease and not an African woman disease. Doctors tell us that when we bear children the pain will go away but babies are not pills and it is the leading cause of infertility across Africa. My journey has been gruelling. The physical, mental and emotional pain has taken a toll on me and my family. Having to deal with a recurring condition that has no cure has been draining. Having a sure diagnosis helped because I embarked on treatment immediately. However the side effects were too many and we had to start on alternative treatment which also has its fair share of side effects.
Being a mutative and progressive disease, some have it worse than others. There are women who bleed every two weeks of the month and are in constant pain. Others have to deal with the different manifestations of the pain wherever the endometriosis lodges itself. This disease has cost women their marriages, their careers and their social lives. Sex is very painful and many women in marriage don't engage in it. Infertility is also another major problem and most of our friends suffering from endometriosis have actually been divorced. I now manage the pain with diet. I'm on a vegan diet and try to be as healthy as possible because loads of food we eat cause inflammation. My pain starts around the ovulation period and I have to make sure I take all the necessary measures to avoid the flare-ups.
Endometriosis occurs when you have ectopic uterine tissue occurring in other pelvic organs such as ovaries or tubes. The tissue can also go to the rectum. Ectopic uterine tissue has also been reported to be found in the brain.
Theories exist to try and explain the condition. One claims that Instead of menstrual blood coming out like it should during the menses, it goes backwards through the tubes into the abdominal cavity.
• Severe pelvic pain
• Heavy periods
• Constipation and bowel problems
• Urine frequency
• Painful sex
• Difficulty in conceiving
Endometriosis can also be asymptomatic, which means it does not present with any symptoms. It will only be discovered if a woman fails to conceive or when an ultrasound is done.
Diagnosis can be done by
1. Getting the patient's history, especially where there have been reported extremely painful periods. For certainty, a laparoscopy (a surgical procedure in which a fiber-optic instrument is inserted through the abdominal wall to view the organs in the abdomen or to permit a surgical procedure) is recommended.
Gynaecological conditions that have similar symptoms have to be ruled out.
May involve hormonal medications and/ or surgery.
Laparoscopic pelvic surgery is preferred by gynaecologists.
Women with endometriosis might have various organs in their body stuck together e.g. the ovaries, the fallopian tubes or the intestines. The doctor is able to establish this through the laparoscopy. In such cases, an operation is necessary to 'unstick' the organs.
Endometriosis is a chronic condition, which usually goes on until menopause.
Dr Edward Sang is a consultant obstetrician and gynaecologist.