The possibility of not being able to get pregnant or carry a child to full term is perhaps one of the biggest fears of women, especially for those living with endometriosis which can affect fertility.

Endometriosis affects millions of women worldwide, and for those like Sandena Davis, the emotional and physical toll of the disease is profound.

READ: High cost of living with endometriosis: Jamaican women feel the pinch

Sandena, a mother of one and an endometriosis warrior, says fear has prevented her from trying to have another child since the birth of her son.

“I know everything that my body has been through over the years. I don’t want to get too excited because it would hurt me too much to try and not be able to,” Davis told Observer Online. “I personally don’t know if I could handle it emotionally.”

The 39-year-old added: “So, I just love my son as best as I can. He’s graduating high school this year, so we’ve done well together.”

Endometriosis is a condition which causes tissue similar to the lining of the uterus to grow outside the womb, bringing not only debilitating pain but also the crushing uncertainty of fertility.

Davis was diagnosed with the disease in 2015 at the age of 29. Painful periods and extended bleeding were some of the symptoms she experienced before her diagnosis, which prompted her to visit a medical professional.

“My entire teenage years, from 14 to 29, were plagued with painful periods, unexplained bleeding, and extended periods of bleeding,” she said.

Davis explained that the birth of her son came as a surprise to her, as she had been on contraception during this critical period of her life to manage the excruciating pain she experienced.

“I was on contraception when I was a teenager to manage my flow, to help deal with my pain. So, when I got pregnant with my son, I was taking the pill. I’d been on the pill for years. He wasn’t planned; he was just this huge shock in my life that turned the world upside down. Let me be very honest,” she shared.

Davis has stage three endometriosis, which is considered moderate. She said the disease sometimes affects her role as a mother.

“Whenever I’m in excruciating pain, whenever I’m at my worst physically, I’m unable to be the mum I want to be. He’s 16 now, so he’s more self-sufficient. But when he was younger, his mum would just have to lie in bed, unable to do anything. He’d see me crying and curled up in pain. Sometimes, he’d have to eat what he didn’t want or make something quickly for himself because I couldn’t support him in that way,” she said.

Some women are advised by their doctors not to delay pregnancy due to the potential of the disease becoming worse over time. Cherie Raynor is among the endometriosis warriors who received this advice.

“I was diagnosed at 21, which was very young. And at 21, they said, ‘You should probably try to have a child in the next two to three years because after that, it’s going to be harder’,” Raynor said.

It was a difficult piece of news to digest for Raynor because, at that age, she wasn’t mentally prepared to have a child, the now 32-year-old said.

“At 21, I thought I was still a child myself, so I thought, ‘A child can’t have a child. That’s not happening.’ I don’t have children at the moment. To be honest, it’s very scary and very real, because it does affect your fertility,” said Raynor.

“For years, I gave up and said, ‘Okay, if I can’t have a child, then I don’t want any.’ So, I just made up my mind that I wouldn’t have children. But I’m a little older now, and my mindset is changing. But it’s a hard thing to hear at 21, that you only have a two-year window,” she expressed.

“I have a friend who has the illness a lot worse than I do. She’s older than I am and has had two children naturally, without IVF or anything like that. It’s a process. When you do have children, it’s not like everyone else’s experience. You don’t just sleep with a partner, take a test, and find out you’re pregnant. It’s a whole process. You have to make lifestyle changes to manage the illness and to get pregnant. So, it’s not easy,” Raynor continued.

Dr Raquel Gibson, an obstetrician and gynaecologist, explained that endometriosis affects fertility in different ways depending on its stage.

“The degree to which endometriosis affects fertility is dependent on the stage of the endometriosis. There are actually four stages. If there’s not a lot of endometriosis, it’s called minimal endometriosis, and that’s stage one. Stage two is referred to as mild. Stage three, moderate. And of course, stage four, severe endometriosis,” she said.

In the first and second stages, the disease causes inflammation from endometriotic deposits that can affect ovarian follicle development, reduce ovulation, and hinder sperm movement through the fallopian tubes.

It may also interfere with embryo implantation. In the third and fourth stages, the condition progresses with more scarring, which can block the fallopian tubes and distort pelvic anatomy, significantly impacting fertility.

Dr Gibson shared that for treatment, an operative laparoscopy can be done to remove or burn endometriotic deposits.

“So, to make the diagnosis, you do a diagnostic laparoscopy. But with the treatment, you can do an operative laparoscopy, and in so doing, you can remove the excess or burn whatever endometriotic deposits that you are able to burn safely. Because, remember, it’s these endometriotic deposits that are released in all of these inflammatory substances that can interfere with egg release and the movement of the sperm along the tube and implantation of the embryo,” she said.

The gynecologist explained that if pregnancy doesn’t occur after surgery, ovulation induction drugs may be given to stimulate egg release, followed by intrauterine insemination (IUI) to help the sperm reach the egg more effectively.

“You can give these patients an ovulation induction drug to try and stimulate these follicles, the ovarian follicles. And in addition to that, you can do IUI, which is intrauterine insemination, because we also said that these inflammatory substances can also interfere with sperm function,” Dr Gibson said.

“So, if it’s intrauterine insemination, you actually get in the partner’s sperm, and you wash it, prepare it, and then you inject the sperm as high up into the uterine cavity as possible. So, it just has a short way to swim. So, instead of swimming from the vagina, through the cervix, through the womb, to the tube, and to meet the egg, you give them the ovulation induction drug to help ovulation to take place,” she continued, adding “And then on the day that the egg is removed, this basically helps to get the sperm up to avoid the passage through the vagina and the cervix and through the lower part of the uterus.”

For more advanced stages, where scar tissue may block the fallopian tubes, Dr Gibson explained that IUI may not be effective due to the physical blockage. She shared that in these cases, in vitro fertilisation (IVF) is recommended. IVF involves stimulating the ovaries to produce eggs, which are then fertilised outside the body, and the resulting embryo is implanted in the uterus, bypassing the fallopian tubes altogether.

However, Dr Gibson shared that the IVF procedure comes at a significant cost, which may be out of reach for some people.

“I mean, you may not necessarily want to jump to that because it can be very expensive. I think in Jamaica now, it’s about US$8,000 to do in vitro fertilisation, so not everybody can afford that,” the gynecologist said.

Dr Gibson suggested that, in some instances, patients can explore operative laparoscopy to remove scar tissue.

“If you have a lot of scar tissue, maybe you’d want to try and break down some of the scar tissue and do aggressive breaking down of the scar tissue. But a lot of times when you do that, the scar tissue is followed by reformation of the scar tissue,” she advised.

To better manage the condition, the gynecologist is urging women to educate themselves on the available treatment options, whether they are trying to deal with the pain that comes with the disease, fertility, or mental health challenges.

“When it comes to the infertility part, they need to educate themselves with the options and also seek out the best medical advice possible by visiting the specialist who is equipped with that knowledge,” Dr Gibson said.

“And I want to also add that if it’s diagnosed very early, and you’re really very young, you’re not thinking about getting pregnant… An option is that they could freeze the eggs,” she continued. “But really educate themselves on all the treatment options; make sure they know who to go to for the best advice, proper diet, regular exercise, and enough sleep.”