A journey with endometriosis

Posted on 5 September 2016

In 2014 Valencia Kippie, a 41-year-old mother from Cape Town, finally got the answer to a question she’d been asking doctors for more than 12 years: What’s wrong with me? The answer kick-started an awareness campaign about endometriosis.

Endometriosis is a chronic inflammatory condition that affects almost one in 10 women. It’s also something most people would rather not talk about. The condition is characterised by intense pain that typically kicks in a week or two before a woman’s menstrual cycle and during her cycle. Symptoms include extreme fatigue, heavy menstrual bleeding, painful intercourse and infertility – but endometriosis is not easy to diagnose.

A long, painful journey
‘I saw so many doctors to try and find out why I was in such pain,’ says Valencia, ‘I couldn’t sleep and I was too tired to get out of bed. If you’ve ever had a pinched nerve or severe toothache, that’s the level of pain I was constantly dealing with. I was often off work, but every time I saw a gynaecologist the outcome was the same. They would perform routine tests and scans and declare there’s nothing wrong with me. One doctor even implied the pain was in my head and referred me to a therapist.’

At her wits’ end, frustrated and doubting her own sanity, Valencia went to see a therapist who listened to her story and suggested she see just one more doctor: a fertility specialist. Although Valencia was not trying to fall pregnant, fertility specialists have superior diagnostic capabilities. ‘He performed a laparoscopy that revealed I had endometriosis,’ says Valencia. A laparoscopy is a surgical procedure during which an incision is made in the navel to insert a camera to see what’s going on.

The laparoscopy showed that Valencia had endometrial tissue growing outside of her womb. Endometriosis occurs when the endometrium – the tissue that lines the uterus – grows elsewhere in the body, such as in the pelvis, ovaries, fallopian tubes or organs. ‘When the endometrium is shed during a menstrual cycle, the tissue that’s in all the wrong places will bleed and cause severe pain and dysfunction,’ Valencia explains.

The fertility specialist surgically removed as much of Valencia’s dysfunctional tissue as he could and prescribed hormonal treatments to suppress her menses. Although she’s doing much better, Valencia has learnt that endometriosis is an ongoing, progressive disease that’s shrouded in myths – and it can recur.

Helping other women
‘After my diagnosis I was left with two choices,’ says Valencia, ‘I could be bitter and feel sorry for myself or I could do something positive to help other women in my situation.’ Valencia chose the latter and established an advocacy organisation called Endometriosis Awareness, which is now a registered NGO.

‘I just started talking about endometriosis and I never stopped. My vision is to facilitate as many drives in schools as possible so that young girls can get to know the symptoms and society becomes more understanding,’ Valencia explains. ‘My inspiration is my daughter. I don’t ever want her to go through what I went through.’