The high cost of living with endometriosis

Endometriosis is a painful condition where tissue similar to the lining of the uterus grows around the organs in the abdomen.  

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Every month that 40-year-old Rosemary Mwaniki gets her menses, she spends Sh16,000 on pain relief medicines to treat cramps.

This is money for a doctor's consultation in a Nairobi top hospital; after being rushed to the emergency room, four types of painkillers are given through the vein for quick relief, and more oral medicines to take for two to three days until the muscles in her uterus calm down.

Besides the Sh16,000, she says she had spent close to Sh1 million treating a disease that so many gynaecologists and surgeons missed, endometriosis, an illness in which tissue similar to the lining of the uterus grows outside the uterus.

"Do you know why it has been this expensive?" She asks.

"No doctor ever told me I had endometriosis. They kept treating me for useless things like fibroids, which every woman has, then I end up spending Sh16,000 every month because I'm always in this unexplainable pain. They never take time to think away from certain diagnoses. I had all the signs of endometriosis. They could have asked me this, 'How short is your menstrual cycle? Is there pain in your right leg?' Then they think what else could be the reason for my monthly pain and unexplained infertility," she says.

"I once asked a doctor if he goes home and thinks about each patient that he has seen. He sees 50 women a day with different complications, he has his family and his life, what time will he have to wonder what I have and why I am not getting better?"

Rosemary's endometriosis has progressed to Stage 4, a more severe form of this disease, where it has spread to one ovary and right leg.

Sophie Richards (who sought anonymity because she is undergoing another surgery soon) says she has had several surgeries and countless treatments for endometriosis management. The disease has no lasting treatment, so the costs keep piling up as she strives to lead a pain-free life.

Sophie tells the BDLife that she was not aware that she was suffering from endometriosis until it was accidentally discovered during surgery.

“The surgery cost me about Sh550,000, although it was not endometrial surgery. I'm supposed to have another endometrium surgery, but I am afraid to have it done," she says.

How it presents

Endometriosis is a painful condition where tissue similar to the lining of the uterus grows around the organs in the abdomen. The uterus has three layers; the inner lining is the one that's shed every month when a woman menstruates, called endometrium.

In the majority of cases, the experts say that you will find this tissue growing in the pelvic area. Endometriosis can also grow in any other part of the body; they have seen it in the eye and ear as well. Similarly, it can invade different organs, most commonly the large intestine. If this tissue infiltrates the uterine wall, it is adenomyosis; if it infiltrates the ovary, it is endometrioma.

Part of Sophie's monthly bill is the cost of buying hormonal contraceptives to manage her painful menses and the spotting in between her monthly periods.

"Currently, I am taking the pills for 21 days per month until I undergo the surgery on my intestine and uterus, which I guess are all coiled together because of the endometriosis, which is at stage four. My fallopian tubes are also blocked, so I will need surgery to correct all that mess," she adds.

Dr Joe Njagi, a consultant obstetrician and gynaecologist specialising in the excision of endometriosis, says endometriosis is an estrogen-dependent condition that progresses when the ovaries have been activated after the start of the menstrual cycle.

"Endometriosis can be detected before the start of menses and the end of menses (menopause). My youngest patient was 15 years old. It can start early and go on until post-menopause. It doesn't necessarily depend on when women start their menstrual cycle to detect it," he says.

The cause of endometrium is not known, which is why it may be difficult to manage; it is considered an enigmatic disease. Experts say research has shown that foetuses not yet born have been found with traces of endometrial tissue.

"Because we don't know how it develops, early diagnosis is very important. Then we can manage it and slow it down to a point where it doesn't affect the woman's quality of life and fertility," the doctor says.

Doctor Joe Njagi operates an endometriosis ultrasound scan at 3rd Park Hospital in Nairobi.

Photo credit: File | Nation Media Group

Is there a relation between endometriosis and fibroids?

"There has not been any established relationship between fibroids and endometriosis. What fibroids have been confused with is adenomyosis [a painful condition in which endometrial tissue exists within and grows into the uterine wall] because fibroids grow on the wall of the uterus. But the symptoms are different," Dr Njagi adds.

Symptoms and diagnosis

What symptoms, then, are suggestive of endometriosis?

"Women who have pelvic pains, pain in the lower abdominal region, cyclic pain (dysmenorrhea)—in fact, 80 percent of women who experience very painful menses could be suffering endometriosis, pain during sexual intercourse, pain while passing stool, heavy bleeding, and women who would present with depression and bowel symptoms," Dr Njagi says.

The diagnosis should be made by a specialist who has the skills to perform endometriosis imaging. But they are very few in Kenya.

"Unfortunately, we see women who come in too late when the condition is worse; they will have these symptoms for up to 10 years," says Dr Njagi.

"The first line of imaging is an ultrasound scan, which is usually transvaginal and gets close to the uterus, and we can look for changes that are suggestive of endometriosis. You will be able to tell if there is endometriosis and the severity of the disease. Another imaging technique is magnetic resonance imaging (MRI). We can also optimise and do a periscope, which is a minimally invasive procedure where you put a camera in the abdomen which can be used to look around, especially for early disease," he adds.

If the scan does not reveal traces of endometriosis, it does not mean the patient is clear of the disease; they could be having the early disease (superficial disease), which is a very tiny growth that can cause severe symptoms.

"It is also true to say the patient's symptoms, mostly pain, are not directly correlated to the severity of the disease. Some have the early disease but have severe pain; others have the advanced disease yet have settled symptoms," he says.

However, Dr Njagi adds,"If after diagnosis, there is nothing and you still have the symptoms, we need to rule out any other condition that can cause pelvic pain. Some of the conditions that can cause pain are nerve problems, neuropathic pain and myalgia. We will start the patient on treatment for endometriosis, and if she does not respond to the treatment, we will then conduct laparoscopy."

How it affects fertility

The scans can be performed during or after your menses.

Does it affect fertility?

"We have cases where women seek treatment not directly because they have symptoms of endometriosis, but because they have been trying to conceive for some time and have not been able to do so until they find out that they have endometriosis. However, you have a chance of conceiving if you have endometriosis. We have to establish the significance of how much fertility has been affected. It's only a matter of when the condition was detected, which will make a significant improvement in the level of natural conception," Dr Njagi explains.

Sh5 million treatment

The treatment for endometriosis often involves medicine or surgery. Dr Njagi tells the BDLife that there is no medical cure for endometriosis. For the medical treatment, he says they prescribe painkillers and hormonal treatment, but if the patient does not respond, they opt for an excision.

For instance, Rosemary has had surgeries—not the excision of endometriotic lesions or nodules, but fibroids removal, ovary excision and others, which gave her relief for a year, then the pain came back. Now every month she has to take opioid painkillers and anti-nausea drugs as she mulls doing the excision surgery.

"Depending on the severity of the patient's condition, surgery would cost from Sh400,000 to Sh1.5 million. For the follow-up medical treatment like physiotherapy, the patient might need medical counselling, hormonal suppression medication, and, in the worst case, protective ileostomies, making the entire treatment and surgery cost as much as Sh5 million," says Dr Njagi.

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