Women affected by the chronic condition of endometriosis are not only grappling with the physical, emotional and mental impact of the disease, but also the high costs associated with treatment to manage the disorder.

Cherie Raynor, who has stage three endometriosis, received a rude awakening nearly nine years ago about the costs involved in merely diagnosing the disease – an often painful condition in which tissue similar to the inner lining of the womb grows in other parts of the body.

“I was diagnosed in August 2016, and then in October they said I should have surgery by December, but that didn’t happen. I sought multiple quotes for the procedure, and the first doctor quoted me a million dollars. I thought, ‘Where am I supposed to find a million dollars?” the 31-year-old recounted.

After a long search for the most affordable laparoscopy, a minimally invasive surgical procedure used by surgeons to confirm diagnosis and treat endometriosis, Raynor opted to go with a familiar face.

“When you see the difference in cost between the doctors in Jamaica for the surgeries, it’s ridiculous. The amount I ended up paying was with my mother’s doctor. Life came full circle. He’s my doctor to this day. He was the most affordable and, I believe, the best person to have operated on me, which is (noted obstetrician and gynecologist) Dr Michael Abrahams. He makes me feel comfortable, so the whole process was a lot easier to go through,” Raynor said, adding that the surgery confirmed that she had endometriosis.

Raynor noted that, prior to her diagnosis, she had a regular menstrual cycle, but for two weeks she experienced prolonged bleeding.

“I had a regular cycle from prep school going straight to university, and then one day I just couldn’t stop bleeding for like two weeks straight, which would have been odd. I found that weird, and then I was having all sorts of pains. I never understood what it was, and I went to the doctor, doing test after test, until I went to a radiologist, and they gave me a piece of paper that said endometriosis with question marks. I didn’t even know what it was.

“So I have a disease that I didn’t even know existed. So when I got the paper, I asked them, ‘Okay, so what’s next?’ And they said surgery is the only way you can diagnose endometriosis. To hear something like that, most people don’t want to just get cut open like that. So it was a very strange experience and an expensive one because I wasn’t just going to take it at getting one piece of paper from somebody to say, ‘Okay, I’m going to let somebody put me under anaesthesia and cut inside of me,” Raynor said.

In addition to the cost of diagnosing the disease, women affected by endometriosis also face high prices for menstrual care products, injections, and alternative medicine, according to Sandina Davis, who is also battling stage three endometriosis.

“If the average woman uses one pack per month, that’s not me. That’s not, I’m not the average woman, right? And so the cost of menstrual care products is something to consider,” the 29-year-old Davis said. “What I do is I travel annually to visit my twin. I stock up on my care products when I travel, and I bring back the whole bunch of them. And that suffices for maybe a good nine months until I go again because it’s not going to be feasible for me to be picking up the stuff in the supermarket.”

Additionally, Davis shared that women with endometriosis can easily spend millions on treatment annually due to the ongoing need for prescriptions, surgeries, and holistic approaches.

“You have to pay for the injections that come into play if you’re choosing alternate therapy to kind of like manage the hormones and stuff like that to keep the bleeding down or the pain. So that’s another expense,” Davis said.

“I’ve explored alternative types of medicine and more holistic approaches. Those people charge in US dollars. US$300 for a consultation and stuff like that. Not to mention the multiple visits to the doctor or the MRIs or the ultrasounds or the big one, the laparoscopic surgery. So a woman who is going through something like endometriosis, and has to determine what the best course of treatment is, can spend millions in a year easily,” she underscored.

Davis is of the view that persons affected by endometriosis need more support, including assistance from the National Health Fund (NHF), but believes lack of awareness about the condition is a hindrance.

“We deserve NHF help once our doctor diagnoses us with endometriosis because you constantly have to be getting things to ease pain or to manage bleeding,” Davis said.

“However, the truth is awareness is not at the level that we’d want it to be – the more people know about it, the more you will get support,” she continued. “So I think what really needs to happen is larger conversations on a broader scale around it. We get good spotlight in March. But when the lights go off on March 31st, there are still thousands of women in Jamaica who are battling endometriosis.”

Endometriosis is not currently covered by the NHFCard Programme, but the fund has made provision for private patients to fill their prescriptions at a lesser cost at select Drug Serv pharmacies island-wide.

Ashlie Barrett, another endometriosis patient, is urging women to invest in health insurance to assist with the exorbitant costs associated with such medical conditions.

“I do implore many people, not just women, to invest in some sense of health insurance. And even if health insurance is not available, there are clinics and facilities, like the fertility unit, that offer services to women who specifically go through reproductive challenges,” she said.

“And that’s also a very difficult part of the process to finance. Occasionally, you’re in the hospital for two or three weeks, and depending on the hospital that you’re associated with, obviously, you’re racking up a bill. So, there are serious financial challenges that are associated with endo, just like any other chronic medical illness where you have to deal with coping mechanisms on a regular basis,” Barrett continued, adding, “And obviously, surgeries will contribute to you having to sign these finances as well, all around. So it is rough; I can say that. But it’s not much when it comes down to that aspect of things, the finance aspect of things.”

According to the US-based Mayo Clinic, endometriosis often affects the ovaries, fallopian tubes, and the tissue lining the pelvis.