All about Endometriosis, the beast Njambi Koikai battled

Njambi Koikai's life story, both online and offline, was woven with a singular thread: her unwavering battle against endometriosis.

After a gruelling fight that spanned over a decade, the former radio host passed away on Monday.

Koikai bravely endured more than 20 surgeries to manage the pain, and became a vocal advocate for endometriosis awareness.

Her passing leaves a void, but also a burning desire to learn more about endometriosis.

Dr Steve Mutiso, an obstetrician-gynaecologist, who specialises in minimal access surgery at The Aga Khan University Hospital, explains.

What is endometriosis?

Let’s start with the basics. The uterus is a structure in a female’s body that is designed for carrying a baby, and the womb has layers that serve different purposes.

The innermost layer is called the endometrial lining, and this is the layer that comes out every month as menstrual period— a shedding of that inner lining of the womb.

Endometriosis, therefore, is the presence of the lining of the womb, which is called the endometrium, at a site that is not within the womb.

And it can be anywhere.

For instance, on top of the womb, on the ovaries, inside the tummy, and even in distant sites such as the lungs and the brain.

Is it possible for one to know that they have endometriosis even before they visit a health facility?

To answer that question, I'll go back to what this disease is.

So, at the point when a woman is shedding off that lining, the signal usually doesn't come from the womb.

It comes from other centres to tell the womb this is not conceived, and there is need to shed off this lining inside the womb to prepare for the next cycle.

When you have endometriosis, it means all those other abnormal sites that have that lining of the womb will also get the signal to be shed off and bleed.

But because they're in a site that is not where they were designed to be in, they cause a lot of intense reaction around that site.

And this intense reaction initially is manifested as period pain that is out of proportion of what we expect.

Period pain shouldn't limit you from doing your daily activities. Anything that's outside that context is not normal period pain.

And any woman who has abnormal period pain should always be thinking, could this be unusual and possibly endometriosis?

When does it occur?

It can occur at the onset of menstruation or even later.

And this is true by the kind of endometriosis patients we see. We have some as young as 13, and as old as 45 to 50 years old.

As this disease develops, the longer it's present, the more intense the symptoms seem to become.

Are there different stages of endometriosis, maybe in terms of pain?

Yes, and it is based on where it originates from and we have four stages.

On the first, you have little or no damage to the structures that it’s on.

As you progress to stage two, three, and four, the damage to the structures becomes more.

The further it is away from the origin of the lining, the higher the staging.

With regards to the pain, it's not related to the extent of the disease. And what I mean by this is that you can have really bad endometriosis, which we call stage four disease, but the pain could be much less than someone who has an early-stage endometriosis.

Could you talk to us about the different diagnostic options available for endometriosis in Kenya, and its prevalence?

Statistics show that one in six to one in 10 women might have some form of endometriosis.

But looking at the bigger context, any woman who comes in with significant period pain and doesn't have a cause on normal ultrasound imaging, most of them might have endometriosis.

There are many ways you can diagnose it. One, and what is usually the first way, is just by the symptoms.

The second way is by imaging, like doing a pelvic ultrasound, whereby we're able to investigate the pelvis from outside.

The only limitation of this imaging is that early in the disease, the damage is so small that you might not be able to see anything on the scans but in the latter stages it could pick it up really well.

The last way we diagnose is by seeing it with our eyes through a form of surgery called laparoscopy— camera surgery that makes tiny cuts in the tummy to look for the endometriosis lesions.

All these three modalities are available in Kenya.

And treatment options?

The best options usually are removal of these abnormal lining bits that are outside the womb, and that involves surgery.

We also have medications that we can give that counteract the hormones in a woman's body that aid in the growth of endometriosis.

The problem with endometriosis is that because this lining is present in a woman's body throughout her life, there is still a chance that it will recur because the genetic problem that is there, causing this disease to form, will still be present in this woman's body throughout her reproductive life.

I always tell my patients once we've diagnosed endometriosis that we are together until the time they finish their reproductive life because they will probably require consistent reviews and reassessments to aid in improving their quality of life.

Are there any new or emerging treatments for endometriosis, whether in Kenya or globally?

Notably there's not much change in terms of the treatment profile.

But there are other drugs coming into the market that actually might postpone the need for surgery, and these are available worldwide, even in Kenya.

Is it preventable, and is it hereditary?

Hereditary? yes, it is. 

There are genes that make women predisposed to having endometriosis.

On prevention, it is a difficult question to answer.

What we know with endometriosis is that you can't prevent the disease.

If it's going to come, it's going to come either way but one can be vigilant to the symptoms we've touched on which will aid in earlier diagnosis and prevention of the complications that it can bring.

What would you want women with endometriosis to know?

This is one of the diseases that one can live a normal life with, especially if it's diagnosed at an early stage and they get the correct treatment.

Also, treatment does exist in the country.

The last thing is that having endometriosis should not limit a woman's ability to be the best they can be, you know, socially, professionally, in life, especially, and that actually is usually the aim of treatment— to try and return this woman's life back to normal. I would also urge those experiencing abnormal period pain to get an assessment.

Is there a correlation between endometriosis and infertility?

One of the biggest burdens of concern with endometriosis is its impact on the ability of a woman to conceive.

A good number of women will have lesions of endometriosis on the fallopian tubes, where fertilisation occurs.

And because of the continuous irritation of the disease on these tubes, they might damage the tubes.

Moreover, just the presence of endometriosis lesions around the ovaries and tubes seems to significantly prevent conception even though there may not be any physical damage to these structures.