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Diagnosed to be endometriosis – Ciru Muriuki speaks out

Not only have excruciating menses been media personality Ciru Muriuki’s normal for about 20 years, she’s also had to be put on menopause and has once lost control of her bladder, owing to haemorrhagic ovarian cysts. All these due to what was diagnosed to be endometriosis, FAITH GACHOBE writes

When you watch her on K24 TV’s Alfajiri every morning, she’s bubbly as always. It is hard to imagine presenter Ciru Muriuki has struggled with paralysing pain every month since she began her menstrual cycle at the age of 11. I approach her in the newsroom as she’s seated quietly at her desk, engrossed in work.

For a minute, I contemplate whether to engage her then about the nightmare that has haunted her for years, or to come back later. When she spots me, she welcomingly gestures at an empty seat beside her, and we begin talking.

Early bloomer

Ciru was an early bloomer; at 11, she had already begun her menstrual cycle. Unexpected as it was, the onset of her period did not bother her. If anything, she was excited about the milestone.

The first two years were hassle-free; minimal cramps and at times none at all. However, when she joined Form One at Kianda School aged 14, she began experiencing painful cramps. Initially, she thought it was normal.

“Maybe I’ll be better tomorrow,” she’d tell herself every other month when on her period. As much as the pain was paralysing, she persevered throughout high school.

After all, everyone said it was normal, with some of her classmates even calling her dramatic for missing classes. At 20 years old when she joined campus, things became worse. “I was constantly vomiting, had chills and couldn’t function at all because of the pain.

Medicine.

 

Even taking painkillers did not work. I’d even try to lie down in awkward positions to ease the pain. It was just horrible,” Ciru recalls.

At the time, she was a medicine student at Chiromo campus before switching to media studies three years later, and the more she accumulated information, the more she became aware that the pain she was experiencing was not normal. At 23, Ciru finally went to see a gynaecologist for the pain.

“The doctor did an ultrasound and they found two large endometrial cells outside my uterus. That was the first time I underwent treatment.

They put me on hormonal treatment and extremely strong painkillers. The pain eased for a while,” remembers the media personality who has also worked in radio before. Around 2015, the pain came back. It was worse than before. She would be in extreme pain regardless of the time of the month. This time, it was more like a severe indigestion pain.

She was later referred to Dr Nathan Thagana, a gynaecologist who had worked with women suffering from endometriosis. “He asked if I had been diagnosed with endometriosis and I told him that I had been diagnosed at 23.

He said that one could not have definitive diagnosis unless a laparoscopic surgery had been performed. This meant that he would make three incisions on either side of my lower abdomen, and one on the belly button, and then go in with a camera to check the magnitude of the endometriosis.

The diagnosis was that the endometriosis had spread to my intestines, therefore causing the excessive pain,’’ recounts Ciru. She was then put on strong hormonal treatment that basically put her on menopause, and that’s what resolved the pain.

Haemorrhagic cysts

On one incident last year, Ciru went back to her doctor after she had lost control of her bladder due to pain. The doctor did an ultrasound that revealed she had two large haemorrhagic cysts around her ovaries, which was still the endometriosis.

The doctor performed a laparoscopic surgery in December 2017, and that was when she was definitively diagnosed with endometriosis.

The cysts and the endometriosis cells were later surgically removed. Three months post surgery, Ciru is doing well. Once she gets off the hormonal treatment, she can bear children if she desires.

Among the people who have supported her through the agonising journey is her partner, family and a group called the Endometriosis Foundation of Kenya, whose founder is another endometriosis warrior known as Elsie Wandera.

Decade of Pain

Thirty-eight-year-old Elsie’s journey with endometriosis began when she was 15 years old, three years after she had started her period. That was also when the pain began.

Elsie.

Elsie was in high school then. “My period at the time was not consistent, and that is how I ended up knowing something was wrong.

However, as best as my mum knew, she told me that pain was normal, and she would give me a hot water bottle to manage it.

Some days were so bad I had to be rushed to the clinic for an injection,” narrates Elsie, who works as a social mission assistant manager at a mulnitanional corporation. In 2006, after more than a decade of living with the unbearable pain, Elsie was definitively diagnosed with endometriosis.

Much like Ciru’s case, Elsie had to go through a laparoscopy, a minimal access surgery. “I remember the most direct way the gynaecologist explained the condition to me was by saying: “your uterus is growing inside out”.

It was then that he discovered and surgically removed a cyst that was growing on the right ovary as a result of the endometriosis. I recall him insisting that I conceive at the time, because my chances of pregnancy were slim,” she shares, adding that the condition affected her self-esteem, because she thought she would never conceive. “I still have not had a child.

I am engaged and that is something we are always talking about with my fiancé, as endometriosis is the third cause of infertility in women around the world,” she says. After the surgery, Elsie was put on a subcutaneous hormonal therapy drug for six months, and it cost Sh27,000 per month.

Luckily, she had medical insurance that covered the entire cost of the procedure. Some of the side effects of the medication that Elsie would experience were mood swings, spotting headaches and hot flashes. After this phase, nothing seemed to change for the better, it only got worse.

The symptoms continued to manifest themselves as chronic painful periods, pelvic pain, and painful bowel movements among many others that impacted her physical and social well-being. She would miss up to two days of work every month.

Raising awareness

In September 2014, Elsie had her second laparoscopy at the age of 34, to remove another cyst on the left ovary. This procedure cost Sh300,000.

Elsie’s insurance company had set a maximum of Sh150,000, as endometriosis is classified as a chronic illness, and they usually set a limit for these, so, Elsie needed to raise the other half. She was able to raise Sh200,000 through the support of friends and family.

This covered the procedure and the post-operation oral hormonal treatment administered for six months. In October the same year, Elsie launched The Endometriosis Foundation of Kenya, which works to raise awareness and provide meaningful care for girls, women and families in Kenya that suffer as a result of endometriosis.

“It was launched so that another woman does not have to suffer in silence, and that she would also not go through the journey alone.

I only understood the implications of the condition fully after my second surgery, and my desire is that another woman does not feel like she’s crazy or imagining her pain,” she says.

Now in their 30s, both Ciru and Elsie continue to spread awareness and hope that more women will not suffer in silence or suffer low self-esteem for a condition that is far beyond them.

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