Refusing to Feel Ashamed: One Ex-Nun’s Search for Answers, Relief, and Inspiration
“What the hell is this now?!” Maryanne Peluso cried out to the Lord after a sudden intense pain throughout her pelvic area jolted her out of the convent chapel pew.
She had grown used to talking to God out loud just to fill the silence. As the sole novice of a Franciscan community in New Jersey—someone who has joined the order but not yet taken vows—she lived alone in a set of empty, echoing rooms.
For two years, Maryanne had been searching for an explanation for why she felt constantly run-down, like she had a perpetual urinary tract or bladder infection. Then the Mother Superior told her to stop talking about her health. So she talked (or cried, or screamed) out loud to God instead.
“Having to suppress those emotions felt like being smothered under a 100-pound pillow,” Maryanne remembers. “And as my pain made it harder to walk and function, my desire to remain in religious life became harder to maintain.”
The burning began soon after the September 11, 2001 attacks. Maryanne had been praying for the country when a new sharp, intense pain and burning in her rectum and vagina made her cry out and jump to her feet.
“It was like somebody lit a match,” she recalls. “It felt like a 10-alarm fire was going on inside my pelvis.”
Although the pain was like nothing she had ever experienced, she figured it was just the stress and sadness over the national tragedy. She certainly didn’t think that it would persist or affect her decision to dedicate her life to the Church.
“But because of my poor health and the sisters’ lack of understanding and compassion, I wasn’t able to remain in my religious vocation [long term],” she says. And more than two decades later, she still feels that burning every day.
DEDICATION AND ISOLATION
Maryanne, now 55, went from doctor to doctor, treatment to treatment, and one incorrect diagnosis to the next—facet joint syndrome, interstitial cystitis—along with the up-and-down emotions that go with that process.
And her pain just kept getting worse. Some days, the burning shot up through her abdomen all the way to her belly button. Too often, all she could do to momentarily ease the burning was lie in bed with a big ice pack.
After taking her first vows, she was transferred to a different convent. Her new sisters seemed understanding and sympathetic at first, but soon they too grew tired of her search for the answers to her pain.
ANSWERS AT LAST
Maryanne has had plenty of time to ask “why”: over the past 23 years, she’s seen more than 50 doctors for her pain. She was told she looked fine, that there was nothing wrong, to try a mental hospital, to just relax, to leave the convent. She underwent multiple unnecessary surgeries for conditions she didn’t actually have.
“We always think of ‘the C word’ as cancer, but we often forget about the other C word: ‘chronic,’” Maryanne says. “Though it’s not necessarily deadly like cancer can be, it’s an awful thing. Nobody ever said ‘chronic’ to me, even though the burning was awful, and it just got worse every minute of every day.”
Eventually, after eight years of pain, a proctologist referred Maryanne to a female physical therapist specializing in pelvic issues, who treated her for just a few sessions before diagnosing her with a condition called pudendal neuralgia.
That night, Maryanne sat at the shared convent computer with tears running down her face as she read story after story, all so familiar they could have been her own. But when she explained it to her sisters, “they looked at me like I had nine heads. And it was just a constant downfall from there.”
SPEAKING OUT DESPITE THE STIGMA
Pudendal neuralgia (PN) can result when the pudendal nerve, which carries sensation and motor function to the buttocks, genitals, perineum, and pelvic area, is damaged or irritated. The vast majority of individuals living with PN are women, and in a horrifying example of how the prejudices of the past continue to affect the present, the word “pudendal” comes from a Latin word meaning “to be ashamed.”
“Maybe nobody’s talking about it because it involves the sex organs or because they feel that it is due to some behavior on their part,” Maryanne says. “But we need the stigma removed so people aren’t embarrassed to speak up about it.”
In addition to bladder or bowel incontinence, PN causes pain: patients describe burning, shock, shooting, aching, itching, or raw sensations. Certain activities, like cycling, horseback riding, or constipation, can over years cause this type of damage, as well as childbirth, injury, tumors, other conditions, or trauma. Maryanne fell on and injured her coccyx bone not long before her pain started and thinks that injury could have caused her pain.
At a specialized clinic, Maryanne saw a nurse practitioner and a urologist, both female, who specialized in PN. From the first visit, she felt heard. The women who diagnosed and treated her “were really, really instrumental in pinpointing what was wrong with me, helping me, and making me feel less alone,” she says.
Finally, she had answers and options. Physical therapy, especially aquatic physical therapy, really helped her turn a corner. Botox injections into the area initially helped her greatly, but the second time she had them done, she got almost no relief. Other types of injections over the years didn’t help much, either. Daily medications for nerve pain and medications for breakthrough pain are some of the only things that ever touched the pain.
CONSTRUCTING A POST-CONVENT LIFE WORTH LIVING
After leaving the convent in 2007, Maryanne found that building a new life in the secular world wasn’t easy. She earned a master’s degree in Catholic theology and worked as director of religious education programs in two parishes until her symptoms forced her to stop working full-time and file for Social Security Disability Insurance (SSDI). Unfortunately, since Maryanne didn’t pay into the Social Security system during her years in the convent, her benefits are even less than the already-inadequate amount most Americans on SSDI receive. She lives with and cares for her mother in New Jersey and loves puzzles, hanging out with family, reading, swimming, and miniature golf.
Like many individuals living with PN, Maryanne no longer has control over her bladder and bowels. She relies on adult incontinence products, and on a pillow made specially for people with pelvic disorders that she treasures but is so expensive she couldn’t afford to replace. She falls often due to the pain and weakness in her left leg. But she has learned that a good life is possible despite chronic pain.
Maryanne recently self-published a book about her experiences during these years. Behind the Tapestry: My Discovery of God’s Grace Amidst Chronic Pain and Loss was written to share her story about “striving to not only fulfill my vocation and become a sister but also striving to be my own best advocate while trying to find out what was wrong with me,” she says.
But when she talks to the newly diagnosed, she doesn’t tell them how long she’s been hurting; she just tells them that they’re not alone, and that it’s possible to live a life they’re proud of. Though she never expected to live this life or endure these trials, Maryanne can appreciate the unique perspective she has gained.
“I’ve never been delusional enough to call my condition a blessing in disguise, but I can admit that if it wasn’t for my PN, I would not have the relationship with the Lord that I have today,” says Maryanne. “It’s because of my condition that I have found myself often on my knees. And when I am, what am I looking up at? I’m looking at Jesus on the cross.”
“We always think of ‘the C word’ as cancer, but we often forget about the other C word: ‘chronic.’ Though it’s not necessarily deadly like cancer can be, it’s an awful thing. Nobody ever said ‘chronic’ to me, even though the burning was awful, and it just got worse every minute of every day.”