Endometriosis treatment delays can lead to devastating effects on fertility

Endometriosis doesn’t only cause debilitating pain and possible organ damage but could affect the ability of those diagnosed to conceive and carry a child.

Advocates and doctors have been speaking out about the delay in getting diagnosed and receiving treatment for the condition, which is crucial to preventing life-long chronic pain.

Endometriosis causes tissue, similar to the lining of the uterus, to grow elsewhere in the body and it can grow all over the bowels, the bladder and the kidney system.

Dr. Sony Singh, a leading expert on endometriosis and the Director of Obstetrics and Gynecology at The Ottawa Hospital, said they don’t know the true impact of endometriosis on infertility, but up to 40 to 50 per cent of patients with infertility have endometriosis as a contributor or the presence of endometriosis.

“The problem is that endometriosis is so rampant. We don’t know whether the different types of endometriosis lead to infertility and at what rate, so we do need more information. But we’re still in the infancy of understanding endometriosis,” said Dr. Singh.

Noreen Damji-Williams said the only treatment she was offered was pain medications and birth control when she was first diagnosed with endometriosis over five years ago. Around three years ago, Damji-Williams and her husband began trying to conceive.

“My husband and I we started trying in 2020. We got referred to a fertility specialist after a year of trying, we tried multiple things. We tried IUI, [but] nothing worked. And then in May of 2022, I ended up in emerge with really bad pain. And that’s when I found out that my endo had been progressing.”

But when she mentioned to her doctors that she was looking into doing fertility treatments, they said they could proceed with the surgery to remove tissue.

However, after Damji-Williams’ surgery, the doctors said her endometriosis had progressed so much, they couldn’t complete it. Her only option would be to remove her reproductive system.

“It’s that was really tough for me to process because when I went to the surgery I thought okay, I’m going to get excision, we’re going to be good. And then they wake me up and they’re like, we couldn’t do your surgery. Because it’s gotten too severe,” explained Damji-Williams.

“We’d have to remove your whole reproductive system and that whole point was for fertility. So, I thought I’m in some parallel universe and is this a joke or what’s happening? It’s really hard to process because I was told that will only do your surgery for fertility not for pain,” said Damji-Williams. “I don’t know if I’ll ever be able to have a child.”

She has since been referred to another doctor who has suggested trying to get frozen embryos and try IVF, but that would be Damji-Williams’s only option to carry a child.

“It’s been really hard to process. I mean, there’s options of adoption, which is amazing. But I always wanted a child … So, it’s a battle and I’ll try IVF as much as I can. But if it doesn’t work, I’ll have to accept the fact.”

Damji-Williams said her fertility was not something ever mentioned when she received her initial diagnosis.

“It was never a conversation and 100 per cent, it should be. I feel I want women to know that if endometriosis is ever mentioned to you, and you’re a young female, I would go and freeze my eggs and I wish I had because I was diagnosed in my late-20s. I wish then I had frozen my eggs. And I want women to really know that which I didn’t,” shared Damji-Williams.

If she could do back, she would have frozen her eggs. “I wish I had more control on it when it was mild. I wish I would have had the surgery then. I was never given the option of the surgery then, it was just controlling your pain and that was it.”

Damji-Williams said she believes the medical community has been more reactionary rather than doing what it can to get in front of the condition.

The increase in options available for infertility services has also created a divide between those who can afford fertility treatments like Invitro Fertilization (IVF) and those who have to wait to have surgery that helps treat endometriosis.

“Surgery would help with the pain and even help with you getting pregnant, but there’s a wait time. So, you’re waiting years for treatment. Whereas tomorrow if you have money, you can pay for IVF and infertility treatment, even though it’s not the ideal situation, people are going to pay for fertility treatment to get care,” said Dr. Singh.

He adds it’s also not a way to properly treat endometriosis. “You need a multidisciplinary team. You need centers and experts who can deal with the easier cases which are more superficial or the more complex cases that can then be taken care of to improve infertility. So, we’re seeing a disconnect. What’s right for the patient may not be what’s completely available to them.”

Dr. Singh tells CityNews the key to finding solutions early is education. “Fertility discussions is that societal responsibility. So, I think by the time it gets to a clinic patient physician relationship, it’s too late. As a society, we need to educate on sexual and reproductive health day one.”

“Start early, talking about understanding the reproductive system, understanding how fertility, infertility, endometriosis and pain,” added Dr. Singh. “I think all of that knowledge would empower individuals to understand that all the complexities that are there.”

This would allow those with uteruses to ask the important questions about fertility and treatment right away when they start experiencing symptoms.

Samantha Roberts, who was diagnosed when she was 23 and is now 26, said she hasn’t decided to have children yet, but is scared of struggling to conceive due to her endometriosis.

“It’s scary to be on these waitlists and to have to wait so long to get the help I need because it could jeopardize my fertility in the future. It could jeopardize me having these life goals that I’ve had since I was a child, it could potentially rip those things away from me,” shared Roberts.

In the meantime, many of those who have been diagnosed with endometriosis have turned to groups like Endometriosis Events for advice and support.

“I have someone to talk to who has gone through what I’ve gone through and understands. It’s hard to tell a person who doesn’t have endometriosis really what’s going on and for them to really know but when you have a community of fellow ‘endo-warriors,’ it’s amazing,” said Damji-Williams.