My experience with endometriosis
Regina Wanjiru: She had a difficult experience with endometriosis but after learning how to manage the condition, she now lives a normal and productive life.
What you need to know:
- Regina Wanjiru was constantly in pain and too tired to do anything in her early 20s.
- After two years of shuffling from one doctor to the other, one finally diagnosed her with endometriosis.
- Endometriosis can cause infertility due to the effects of the presence of endometrium tissue on the pelvic cavity, ovaries, fallopian tubes or uterus.
Imagine having to walk with a boulder tied to your lower back every day, then one morning you wake up frantic, sure you have been stabbed on your lower left abdomen. But no, it is the onset of your periods. You lie there in excruciating pain, fatigued beyond words. You pull yourself together, trying to ignore the pain and get ready for work because your period is not an illness.
This was my life for as long as I could remember, my early 20s were especially difficult. I was constantly in pain and too tired to do anything. I visited different doctors but they could not find anything wrong with me. I remember my mum once asking why a young girl like me was always so tired.
After two years of shuffling from one doctor to the other, one finally diagnosed me with endometriosis. It was a relief. I was put on hormonal birth control pills to manage this condition. Birth control works by reducing oestrogen, which slows down the growth of endometrial tissue. Within three months of using the pill daily, the pain had considerably reduced and remains so to date.
Occasionally, however, I experience excruciating pain that lasts for about three days. When this happens, I rest and use a hot water bottle to massage my abdomen. I have not experienced any side effect from taking the pill. Having learnt to manage the condition, I now live a normal and productive life.
According to World Health Organization, endometriosis roughly affects 10 per cent (190 million) of reproductive age women and girls globally.
Pelvic area
The New England Journal of Medicine defines endometriosis as the presence of endometrium-like tissue outside the uterus. Endometrium is the tissue that lines the uterus. It can develop anywhere in the body but usually affects the pelvic area though it can also affect other areas such as the digestive tract, lungs and around the heart.
Symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, pain during bowel movement and, or, urination and depression or anxiety.
Endometriosis can also cause infertility. Infertility occurs due to the effects of the presence of endometrium tissue on the pelvic cavity, ovaries, fallopian tubes or uterus. If you have endometriosis and are trying to get pregnant without success, it is important that you get help and support from a gynaecologist or a fertility specialist
This condition is difficult to diagnose due to its variable and broad symptoms. To begin with, it can mask other conditions such as pelvic inflammatory disease, ovarian cysts and irritable bowel movement symptoms.
Blood tests
There are also no specific signs and symptoms or specific blood tests for the clinical confirmation of endometriosis, not to mention stigma and symptoms normalisation and lack of awareness about it from the public, and worse, from practitioners.
All these reasons cause a delay in diagnosis. So far, there is no known cure for endometriosis. Treatment administered aims to control symptoms.
Even advanced countries such as the UK have a challenge effectively dealing with it. The UK’s All-Party Parliamentary Groups, a cross-party group formed by MPs and Members of the House of Lords who share a common interest in a particular policy area, region or country, issued a 2020 report on endometriosis. They surveyed more than 10,000 people with endometriosis and interviewed healthcare practitioners.
They found that the average diagnosis times for endometriosis has not improved in over a decade: it still takes eight years on average to get a diagnosis in the UK.
HIV and cancer
With this in mind, there is a need to invest and fund research for endometriosis to help millions of women around the world find better solutions to managing the condition. I advocate for a nationwide awareness month just like we have for HIV and cancer.
I am thankful to have had a boss who would allow me to work from home whenever I could not make it to work - most women do not have this privilege.
One of the ways employers can support their employees living with the condition is to allow them flexible working hours, and when possible, to work from home.
Family and friends should also learn as much as they can about this condition to know how to support their loved ones living with the condition.
