'My hysterectomy saved my life': Canadian women open up about chronic pain and debilitating symptoms

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Before Fallon Nagy got her hysterectomy in Regina, she lived with daily, debilitating pain. Having both endometriosis and adenomyosis meant she often felt out of breath, nausea from pain, constant congestion, fatigue and mobility issues, among other issues.

“I was miserable,” she said.

For more than 10 years, Nagy was in and out of the doctor’s office — and sometimes the emergency room — but to no avail. She was constantly trying to advocate for herself. After one surgery, her doctor told her he was unable to manage her case further, and did not send her to another specialist or clinic.

“He basically opened me up, saw I had a ton of disease … and said, ‘Sorry, there’s nothing I can do for you,’” Nagy recalled. “I felt more disheartened that nothing could be done and this would be my life.”

When another doctor suggested she have a hysterectomy, which could cure her adenomyosis — a condition that causes endometrial tissue to grow into the muscular wall of the uterus — she said she felt immense relief at having the option. In March, Nagy had her hysterectomy at 38 years old.

“I’m not in pain every day,” Nagy, told Yahoo Canada, adding that before her surgery, she always felt “full” and as though she had daily cramping. “I definitely feel a lot more positive because I’m not aching all the time.”

Nagy’s sentiments mirror those of many Canadians who require a hysterectomy to relieve them of pain or an ailment from a chronic disease. According to the Public Health Agency of Canada, hysterectomies are one of the most frequently performed surgical procedures amongst Canadian women. American actress and former TV host Oliva Munn, 44, described her hysterectomy as “the best decision for [her]” amid her struggle with breast cancer.

Yahoo Canada recently spoke to Canadians about their experiences with hysterectomies as well as an expert on everything you need to know about getting one.

What is a hysterectomy?

Dr. Alysha Nensi, an obstetrician and a minimally-invasive gynecological surgeon at St. Michael’s Hospital in Toronto, said a hysterectomy refers to the removal of someone’s uterus, which “is the womb where a baby would grow.” Other organs like the cervix, ovaries and fallopian tubes might also be removed at the same time, and this treatment can sometimes induce menopause in premenopausal women.

“For women who are younger and are having the surgery, we often leave the ovaries behind because the ovaries are what makes the female hormones and we don’t want to put people into early menopause,” Nensi said.

According to the Canadian Cancer Society, there are different types of hysterectomies someone can receive, but the most common is called a “total hysterectomy,” which refers to the removal of the uterus and cervix. A subtotal hysterectomy involves leaving the cervix in place, while a radical hysterectomy involves the removal of the uterus, cervix and nearby ligaments.

Some reasons Nensi said as to why someone might have a hysterectomy include abnormal (heavy or frequent) bleeding, treating cancers of female reproductive organs and to help women with prolapse.

If someone’s ovaries would need to come out at the time of the surgery, Nensi said she discusses treatment options for afterwards, like if a patient might need hormone therapy to manage their symptoms. “They could expect new menopausal symptoms they didn’t have before and we can connect them to menopause care providers,” she said.

Another conversation Nensi might have with a patient would be about fertility wishes. “So if we’re removing the uterus, a person cannot carry a pregnancy in their body,” she said. “But depending on their fertility wishes we will often refer them to a fertility clinic to see if they can do an egg retrieval beforehand … and they could use that potentially in the future.”

Canadian woman says she ‘felt so free’ after her hysterectomy

Pickering, Ont. resident Kristina Hyles received her hysterectomy after her endometriosis had spread outside her uterus and her uterus detached on the right side. She had the option of getting a hysterectomy while leaving her ovaries intact. This would mean she wouldn’t be in medically-induced menopause.

For Hyles, however, the additional burden of premenstrual dysphoric disorder (PMDD) meant that if she kept her ovaries without feeling the relief from getting her period, she said she would “for sure end [her] life within a year or two.”

“I couldn’t live like that. ... When it was the week before my period, on top of it being excruciating and painful, I would get very suicidal before the week of my period,” she said. “But the minute I would see red from my period, I would be so relieved.” PMDD is a much more severe form of premenstrual syndrome, which can cause mood shifts, suicidal thoughts and daily disruptions, among other things.

Her gynecologist was supportive of her decision to get a total hysterectomy, and at age 41, Hyles got her surgery and said she finally found some sense of peace: “I felt so free. I woke up from surgery and everything felt clear in my head. I feel like I met myself for the first time.”

Without her PMDD symptoms, which impacted her daily life and relationships with others, Hyles said she is a “happier, healthier version” of herself, adding “I think my hysterectomy saved my life.”

Hyles shared it has been tough dealing with the onset of menopause symptoms, especially the severe hot flashes. However, she said once she figures out the right combination of hormone therapy, she can feel more at ease: “I know that this is temporary. I know eventually it will get better, whereas nothing was getting better before. It felt permanent.”

Another adjustment is the finality of not being able to carry a child. Hyles had previously thought she wouldn’t have children because of her medical conditions and how they affected her mentally, coupled with the possibility of passing anything down to her child. Still, she said she feels like the decision has now “been made for her,” versus something she decided on her own terms.

“I had some grief before my surgery,” she said. “There was always some hope one day I might get pregnant and knowing that after my surgery there would be no way makes me super emotional,” Hyles said. “But I’m OK. ... It’s been a journey and I’m so excited. There’s still so much life I have left to live.”

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