Pretoria activist talks out about journey with endometriosis

Endometriosis is an incurable chronic condition where tissue similar to the uterus lining grows elsewhere in the body. It is recognised internationally in March every year.

It affects about one in 10 women worldwide, and among other symptoms, it can cause excruciating pain and fertility challenges.

A Soshanguve resident, Fhulu Rambau, who has lived with the condition for many years, has shared her journey in her book called My Journey With Endometriosis.

Sharing her experience on the condition, Rambau said she was plagued by severely painful and heavy periods. However, she was told it was ‘normal’ by a range of doctors she consulted with.

She was placed on hormone therapy at a young age without even understanding what was wrong.

She was officially diagnosed in 2016 after a doctor performed Laparoscopic surgery.

“The lack of information delayed my diagnosis and by the time I got diagnosed, the doctor told me that I had stage four endometriosis,” said Rambau. She feels that the condition was not properly explained to her at the time, and she was left to do her own research.

Stage four is the most severe stage of the condition. It entails deep implants, large cysts and widespread adhesions of the uterus lining like tissue to other organs.

According to an expert in the field, Dr Keeleditswe More, endometriosis does not have a cure and is influenced by hormones such as estrogen.

More said that although it is incurable, there are some treatment methods that can help reduce symptoms.

These include anti-inflammatory drugs such as ibuprofen and diclofenac, which can reduce inflammation and therefore pain.

Rambau said her first period after surgery in 2016 was one of the most painful experiences of her life. She realised this is not something that disappears overnight, that it is life-changing in ways she was never prepared for.

After this surgery, Rambau was told that she would never be able to conceive naturally. She tried IVF, was put on fertility medication, underwent a total of nine surgical procedures, but none of them worked.

“Yes, I get triggered and angry, but I am learning to accept my situation. Every woman who speaks out makes it easier for the next girl to be heard sooner, diagnosed earlier, and treated with dignity,” she said.

Rambau felt that because there was a need for awareness around the condition, she became an endometriosis activist, wrote a book and started a campaign where she hosts annual events to spread awareness against endometriosis. She hopes her campaign encourages young girls to feel safe speaking up and promotes early diagnosis.

She highlighted a few symptoms to pay attention to, which included heavy bleeding, pain during or after intercourse, chronic pelvic pain, nd severe period pains that interfere with normal daily activities.

“Some people also believe that it only affects fertility, but it impacts many aspects of a woman’s physical, emotional, and mental well-being,” she added.

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