Not In Her Head Part 2: The Battle Within

Last month we explored how women experience pain differently and began sharing the unusual journey of nurse Anne Montera. Her story continues here. Catch Anne as the featured keynote speaker at EMS World Expo, Oct. 29–Nov. 2 in Nashville. 

Pain is a four-letter word. It’s a deceptively simple syllable that can confound the art of medicine and resonate through a person’s life. Care providers know everything and nothing about it. It is the reason people call us, the trail marker we follow toward our differential diagnosis, and the combatant we seek to defeat in the arena of palliative care.

We also cannot say for certain that you have it, what it means, and how bad it really is. We must take your word for it and go with what the exam tells us. What we know now is that not all pain is equal. Chronic pain conditions are not just angry nerve endings but indicators of inflammation and serious dysfunction. Pain is also not just a simple biological response but a glowing neon indicator of a potentially complicated and devastating medical history—one we might miss if we assume the nature of the call is not serious.

Anne Montera’s relationship with pain is a long and intimate one. By 2002 the young nurse had struggled for years to balance her personal and professional lives while negotiating devastating pelvic pain. It would take three years of perseverance before she would meet the one physician who was willing to listen and knew what was happening to her. He gave her monster a name: interstitial cystitis. 

A Daily War

However, identifying the enemy and defeating it are two different things. An exploratory surgery found her entire pelvis loaded with adhesions to her bladder and intestines. Then there were the ovarian cysts that had to be routinely dealt with. Anne’s lower abdomen waged a daily war with her. 

“Unit 1, respond, 30-year-old female with abdominal pain.”

Her medication regime became a delicate balancing act in constant pursuit of relief. When that was unsuccessful the next assault on her symptoms came at the point of needle: a three-hour drive to Denver, followed by a ruthless series of trigger-point injections, every four weeks like clockwork. 

She was put on methadone for its ease of regulation and longer half-life. Clomid injections for the endometriosis were wreaking havoc with her ovaries. Throughout this Anne had to juggle caring for her young daughter, her work, and shifts. The family moved to Vail, Colorado. She changed jobs, moving into perinatal education. Her husband at the time grew increasingly distant. He would routinely be unavailable to help whenever the time came for more treatment or even caring for the household. 

There is frequently a sense of mystery when it comes to the female reproductive system. Where Anne’s pain was coming from wasn’t a mystery; her entire pelvic floor roiled with lava on a regular basis. Every time they would go in, they would try to make it better, scraping out what adventitious tissue they could. Sometimes cysts would rupture, and the fluid would drain and irritate her pelvic floor. Others grew large enough to threaten her life; an ovarian cyst the size of a grapefruit sent her to emergency surgery. 

“Unit 1, respond, syncopal episode.”

In 2003 it was suggested that perhaps an implanted sacral nerve stimulator might help alleviate her pain and bladder symptoms. One devastating catch: They could not use it until she was sure she was done having children. That wasn’t a possibility just yet.

A New Challenge

“Unit 1, respond, vaginal bleeding, possible miscarriage.”

Anne’s pregnancy ended with a miscarriage at 11 weeks. If she were going to have any other children, it would have to be soon. She started Clomid injections again within weeks of her miscarriage. 

When she became pregnant again, the challenges were enormous. She had been on a methadone regimen for pain control for months. The doctors in Vail didn’t know how to deal with a mother and baby on methadone so were reluctant to see her. She couldn’t have a pelvic exam due to her history. She became hyperemetic in the first trimester, vomiting so much she was placed on a Zofran pump. She lost 25 pounds, a frightening amount during pregnancy. She eventually gained it back, with only an additional 6 pounds. Her pump became infected, requiring IV antibiotics for treatment. She ended up on bed rest for the last trimester, which is its own special version of hell. 

“Unit 1, respond, female vomiting, 14 weeks pregnant.”

Anne’s husband and acquaintances grew more estranged and offered little empathy or support, especially when she remained on her pain-control regimen. 

Throughout her journey she did everything she was told to do by her healthcare providers. She did her due diligence, consulted experts, and researched every avenue. When the doctors in Vail could not manage her case, she traveled back to Denver and worked out a birth plan. C-section was out of the question; the trauma from the surgery would majorly irritate all the structures in Anne’s abdomen, triggering a response and putting her at extreme risk for cysts, adhesions, and worse. The 35-week roller-coaster came to a stop with the arrival of a beautiful baby boy—who also happened to be on methadone.

Anne’s perinatal team decided to maintain the methadone. She planned to breastfeed, so they kept her dosing the same as it had been throughout the pregnancy. The stigma associated with opioid use in general, accompanied with the idea of a mother “tainting” her breast milk, shoves a society-driven stake through some very sound clinical thinking. By maintaining her dose they were preventing her son from suffering additional stress and markedly reducing, if not eliminating, the chance that he might suffer neonatal abstinence syndrome. 

“Unit 1, respond, sick baby.”

For more than a decade, the recommendation from pediatricians and neonatologists has been to allow mothers to remain on their methadone regimen while breastfeeding.1 The amount of methadone that makes its way to breast milk is low, and the benefits of breastfeeding far outweigh the unproven effects of exposure from this route.

Breastfeeding also helped calm Anne’s cysts. After 14 months her son weaned himself without symptoms and with no long-term ill effects. 

Managing the Mischief

Despite the lull in her surgical history, the cystitis remained. With the baby weaned, she returned to the University of Colorado to have a sacral nerve stimulator implanted. 

Before they would do it, Anne had to have a psychological profile done. They wanted to assure themselves she really was experiencing pain and not just addicted to her pain regimen. Once more she had to prove to someone that her symptoms were real.

She met with the interview panel and answered each of their questions. Even now, with years behind her of being treated by a host of specialists, she still had to prove she was legitimately experiencing symptoms that impacted her daily life. After an exhaustive battery of interviews and tests, they came back to her with her results.

“Anne, you’re not crazy.”

The stimulator helped a great deal. Even though Anne was not “cured,” she began to enjoy more normalcy in her life. In 2006 she underwent a partial hysterectomy. Even though her ovaries had caused her agony for years and she was finished having children, her physicians felt that, due to her being just barely in her 30s, to take them would represent a larger problem.

The pain continued to improve, and although it took over a year, she was able to wean off the methadone and antidepressant Effexor. For a brief period it seemed as if the mischief was managed. She became interested in working with patient safety and quality measures, taking a job with the county public health department. 

Then in 2008 the stimulator began malfunctioning. Anne was referred to a new urologist who was well-versed with the device and immediately spotted the problem: “They did this all wrong.”

Once again Anne was thrust onto a fiery roller-coaster that hurtled her from specialist to specialist, tests and readjustments as her pain levels once again escalated. By now Anne had been dealing with this for close to a decade. While it impacted every facet of her personal and professional lives, Anne’s attitude remained positive.

“Stress and pain can feed off each other,” she says. “I became really understanding of my body.” When modern medicine could not help, she turned her search inward and elsewhere, researching alternative avenues to mitigate her symptoms. 

“Unit 1, respond, female with back pain.”

It took an additional three surgeries to repair and then adjust the stimulator so it functioned correctly. In between she would have temporary relief. The stimulator works by essentially redirecting the nerve messages for pain, creating a dead end for them. To adjust it to function properly, surgeons would have to remap the connections each time—that is, to make it work, they would have to recreate the pain to confirm the right connections.

She submitted to this each time, following instructions to the letter, even when it left her in agony. The price tag on each round of stimulator surgery was around $150,000, with no guarantee of a pain-free future. 

No Quarter

The cost wasn’t just monetary: The last tenuous strings holding Anne’s marriage together finally dissolved, and any pretense of support she’d been operating under went with it. Some acquaintances, already painfully estranged by their own judgment of her circumstances, did not support the divorce and pulled further away. She was turned away from her church and ostracized by her community. “Once patients are constrained to pull back from ordinary activities,” notes pain researcher Rebecca Arden Harris, “a large part of their social universe, and the affective life that depends on it, quickly deteriorates.”2  

Relationships are reciprocal, and patients suffering from chronic pain must invest an inordinate amount of energy into just maintaining their daily functionality, leaving little to give to anyone else. This inability to produce the effort to maintain an extended network of relationships pushes the chronic pain patient into a silo, isolated from sources of physical and emotional support. 

The unique path Anne’s life had taken as a result of her condition brought her into contact with local EMS leader Chris Montera, and along with his friendship came exposure to the world of EMS. Together they helped develop the first rural community paramedic program in the nation. Anne conducted protocol reviews and ride-alongs and learned about this very different aspect of medicine and the people who came with it.

Anne and Chris developed a deep mutual respect. Chris became the first person in her life to be able to recognize when she was experiencing pain, even before it hit a level she’d notice. In each other they found compassionate support and unconditional love. In 2013 Chris asked Anne’s children for permission to marry their mother, and their new life together began.

Unfortunately, within just a couple of years, the cystitis was raging once more. The cysts would rupture, crippling Anne for days at time. She could barely stand, much less walk. She aggressively pursued alternative management whenever possible. All the years living in the fiery grip of pelvic pain had made her acutely self-aware of her body. She tried heat packs, essential oils, hot tubs, and massage—every recommendation that seemed plausible and safe—but her body would give her no quarter.

“Unit 1, respond, abdominal pain.”

Doctors increased her oxycodone, added Celebrex to decrease inflammation. This balancing act is exhausting to the system. Her depression increased. They added amitriptyline for the serotonin, but it left her completely nonfunctional. They added Lyrica in hopes of deadening some of the nerve endings, but that became the most difficult to balance. It took large doses to get her to a therapeutic level, and if she did not take it religiously at the same time every day, she would experience wicked headaches and negative effects. Quadrupling her oxycodone made her pain manageable some of the time.

Ovariectomy

Doctors finally decided to revisit Anne’s ovaries, the lone survivors of her hysterectomy. They were loaded with cysts—one ruptured during the exam. The team in Vail waved the white flag and sent her back to Denver. It took her another four months just to get an appointment, followed by three more until surgery. 
Once she was up to 100 mg of oxycodone per day, they added fentanyl patches, allowing her to switch between the medications. She compiled a pain log, meticulously tracking doses and effect ranges. She turned to her alternative therapies between doses. She was heavily monitored, 100% compliant, and never felt she was abusing any aspect of her medication regimen.

Understandably, her pain tolerance had become very high. A 7 for her on a standard pain scale represented a physical danger zone and would likely be incapacitating to the average person. Studies show that in general, women have higher pain tolerances than men, but not because they are stronger or tougher. By and large women have a broader array of coping skills and are more likely to seek medical help and palliative care.

There is also a cultural assumption that they are capable of enduring it due to their reproductive biology, with childbirth being the obvious example. “The perceived superiority of capacities of endurance is double-edged for women,” wrote Diane Hoffmann and Anita Tarzian in their article “The Girl Who Cried Pain.” “The assumption that they may be able to ‘cope’ better may lead to the expectation that they can put up with more pain, that their pain does not need to be taken so seriously.”3 

In December 2016 Anne went under the surgeon’s knife yet again. This time they removed the crippled ovaries, removed old staples, and cleaned up all the scar tissue they could find. No tumors were found. Along with her ovaries, however, went the last of Anne’s estrogen production. She went through a medically induced menopause, and something that normally takes 10 years happened over 10 days. Hot flashes, weight gain, and horrific mood swings strained her relationships. She was put on Paxil in addition to her pain-control regimens. 

Something Off

Just one week after Anne’s surgery and right before Christmas, the Monteras moved into a new home. It was an incredibly active and stressful time. Throughout this period she struggled with the Lyrica. She would experience relief from the pain and bursts of energy, but with them came gaps in her memory. She would clean or bake until late into the night, then fall into a deep sleep. Chris would find her asleep on the floor with no memory of how she got there. The new goal was to get off the Lyrica. 

With the success of the surgery and gradual decrease in symptoms, Anne was also actively tapering off both the oxycodone and fentanyl. A body of literature suggests that opiate receptors could be desensitized by reproductive hormones.1 By taking her ovaries they had changed her chemistry.

Shortly before New Year’s she went to refill her fentanyl patch, only to find out her pharmacy was out. She had to go to a new pharmacy, who gave her a different brand of patch. Patients should not be changed from one brand of fentanyl patch to another. If for any reason the brand needs to be changed, the dose should be retitrated, and the patient’s response clinically assessed—Anne’s wasn’t. Her body reacted differently to the patches—she did not feel well, something was off. 

January 3, 2017 was another busy day for Anne. She ran errands, attended a baby shower, and…well, she can’t remember what else. Her ears were ringing, she had hot flashes, she was anxious. She can’t recall what she did that evening, but Chris can. He awoke around 11 p.m. to find Anne missing from bed. He found her in the kitchen, baking. She commented that she was in “so much pain.” She ripped the patch off, throwing it out. Applying some lavender and a heating pad, she returned to bed.

Ten minutes later, she died. 

Anne’s journey does not end here. The next chapter of Anne's story illustrates the aftermath that we rarely get to see as EMS providers, from the perspective of one of our own. 

References

1. Jansson LM, Choo R, Velez ML, et al. Methadone maintenance and breastfeeding in the neonatal period. Pediatrics, 2008 Jan; 121(1): 106–14.

2. Harris RA. Chronic pain, social withdrawal, and depression. J Pain Res, 2014 Sep 15; 7: 555–6.

3. Hoffmann DE, Tarzian AJ. The girl who cried pain: A bias against women in the treatment of pain. J Law Med Ethics, 2001 Spring; 29(1): 13–27.

Tracey Loscar, NRP, FP-C, is chief of operations for Matanuska-Susitna (Mat-Su) Borough EMS in Wasilla, Alaska. She is a member of the EMS World editorial advisory board. Contact her at taloscar@gmail.com.