Women with disabilities not getting the sexual health care they need, experts say

Jocelyn Maffin with her husband Tod. Jocelyn uses a wheelchair to get around. Sylvia McFadden / Courtesy, Jocelyn Maffin

Most Canadian provinces recommend that women get a Pap test to check for cervical cancer every few years, but not all women can get them regularly, according to Natasha Prodan-Bhalla.

Prodan-Bhalla, who is a nurse practitioner at the ACCESS clinic at B.C. Women’s Hospital and Health Centre in Vancouver, finds that many of her patients might not have been examined for years. The ACCESS clinic specializes in providing sexual health care to women with disabilities — something that these women might not be able to get at their family doctor’s office.

In some cases, this might be an equipment issue, she said. “If they don’t have an accessible exam bed with a lift, they often can’t be physically examined. They certainly can’t have a gynecological or reproductive health screening.”

And sometimes, it’s hard to squeeze in a detailed discussion about sex with a disability — which can be a complicated discussion — into a 10-minute appointment, she said.

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Jocelyn Maffin thinks there might be another reason, too.

The 39-year-old from Nanaimo, B.C., who is in a wheelchair full-time due to a spinal condition she’s had since birth, said that she was rarely asked about her sexual health as a young woman.

“I really thought about it and realized that my able-bodied peers, it was being discussed with my able-bodied peers at certain milestones when you become sexually active,” Maffin said, “when you hit the age of needing cervical cancer screening, breast exams, that kind of thing.”

She was asked once, when she was 14, whether she had started her period yet, she said. And later, she was only rarely asked whether she was sexually active. When she said no, there was never further discussion of sexual health.

And her medical appointments often focused on more serious or pressing problems related to her disability, she said, so any discussions about sex were pushed aside.

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In her mid-20s when she was having serious pain issues, she also noticed that her period had stopped — for two and a half years. Her family doctor told her it was likely because of stress, and it wasn’t until she visited the ACCESS clinic that she found out it was related to her opioid therapy and wasn’t a permanent problem.

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“For me that was really helpful to know that there was a reason for it and it was not permanent.”

Health issues

Prodan-Bhalla worries that missing out on basic exams could have serious consequences for women’s health.

“The women, they’re way less likely to be screened for cervical cancer, so way less likely to get a Pap test,” Prodan-Bhalla said. “So then the cancer goes undetected.”

Many women also arrive at her clinic with skin rashes or other problems, she said, simply because they’re not able to get a regular gynecological exam and might not be able to feel themselves that something is wrong.

“If they’re not examined, it’s stuff that could be easily treated, but because they don’t have a lot of sensation, they can’t feel pain in that area and I tend to see a lot of end stage infections that could have been prevented if we would have had the ability to examine them previously, or earlier.”

Women who spend a lot of time in wheelchairs are also more prone to developing yeast infections, Maffin said.

In a 2012 study, Canadian women with disabilities mentioned that they had inadequate access to sexual and reproductive health services. Another review of gynecological care found that many women with disabilities “are fertile and participate in sexual activity without adequate knowledge,” and that they are at higher risk of pregnancy and birth complications, as well as less likely to receive preventative screening.

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But there’s more than just women’s health at stake — it’s also their reproductive freedom, said Prodan-Bhalla.

“A lot of times they don’t know that they can have a healthy pregnancy, that they are fertile and that that’s open to them. So sometimes those windows are shut for them because no one has actually had that conversation with them,” she said.

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“And I think not having that conversation can be very detrimental psychologically if we miss that window.

“And then they’re 50 and they’re like, ‘No one even talked to me that this was a possibility.’”

Maffin hopes that through training, more primary care physicians can become aware of the concerns of their patients with disabilities. She also envisions a program where doctors in a given region could share equipment, like examination tables that can be moved up and down, so that more patients could get the exams they need close to home, rather than travelling to specialized clinics like ACCESS.

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Things are getting better, though, she thinks. “I feel like we are coming to a place where it’s possible to talk about sex and disability in the same sentence. And I’m really glad for that.”

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