Doctors told her to remove her uterus. The real cause of her pain lay elsewhere.
After taking a break from college and giving birth to her son, Brittany Pope graduated and got a job with benefits. Then, when she was 28, she became pregnant again; This made both him and his long-term partner happy.
However, this pregnancy was more difficult than the first. The Pope had severe abdominal pain. He vomited in the car on the way to meetings. When he came home from work, he would collapse on the recliner because he was tired. The medications given for morning sickness did not work.
Doctors found cysts on her ovaries and she miscarried. The cysts did not appear to be cancerous, but the swelling and pain continued after the pregnancy and her periods became irregular, coming about every three months. In the days before her period, she felt like she was having contractions.
Doctors monitored her cysts with imaging tests, and some said she needed a hysterectomy or removal of her uterus, including possibly removing her ovaries and fallopian tubes.
But Pope, the youngest of nine siblings, didn’t want to take away his ability to expand his family.
“I was very young,” he said. “Was this really the only option?”
Experts eventually focused on a rare condition that explained its symptoms, paving the way for a different type of surgery.
anatomical exploration
The Pope, now 36, was hoping to have more than one child. She and her male partner have been together since they were 17.
After putting college on hold and giving birth to her son in 2011, Pope earned a degree in psychology in 2017. He started working at an institution that oversees services for people with mental disabilities and continues to do so.
Pope’s periods were regular, but there was always heavy bleeding. When her son was born, she began to learn why. Doctors tried to induce her labor but were unable to break her waters. While performing an emergency caesarean section, they determined that she had a septate uterus, a rare birth defect in which the uterus is divided into two parts by a membrane called the septum.
A few years later, during an ultrasound to look for fibroids in early 2018, the Erie, Pennsylvania, resident was diagnosed with uterine didelphys, an even rarer congenital abnormality. Instead of one uterus that looks like a pear, it contains two separate uteruses that look like a banana. The condition sometimes involves two cervixes, which Pope has been found to have.
Uterus didelphys does not prevent healthy pregnancies, but it may cause heavy menstrual periods because each uterus can shed its inner membrane at the same time during the menstrual period. However, sometimes the uterus bleeds at different times.
In November 2018, the Pope was excited when she learned she was pregnant. But a miscarriage that occurred the following month, just before she was hospitalized for a blood clot in her lungs, initially made her cautious about getting pregnant again. Over the next four years, she saw at least eight doctors in the Erie and Pittsburgh area because of her bloating and pain, which were made worse by the intervals between irregular menstrual periods.
Doctors ruled out ovarian cancer and said she might have polycystic ovary syndrome. This syndrome is a relatively common condition, and multiple cysts, often triggered by male hormones such as testosterone, can lead to menstrual irregularities, he said. He took Midol for the pain, but it didn’t help much. She wanted to have more children when doctors recommended a hysterectomy. He was disappointed when they were asked to have MRIs and periodic ultrasounds.
“My problems were getting worse and all they wanted to do was monitor the situation with pictures,” she said.
high hormone levels
In October 2022, Pope went to Cleveland Clinic, an academic medical center less than two hours west of Erie. The first doctor she saw was Stephen Mooney, a reproductive endocrinologist, or obstetrician-gynecologist who specializes in treating infertility and hormone disorders.
Mooney noted that Pope’s blood tests showed elevated levels of four hormones: testosterone; female hormone estrogen; prolactin, which stimulates breast milk; and 17-hydroxyprogesterone, or 17-OHP, a steroid produced by the adrenal glands. The 17-OHP level was almost eight times normal. Estrogen levels were more than 20 times higher.
“I’ve seen all of these hormones rise individually, but it’s unusual to see them all rise at the same time and to this magnitude,” said Mooney, who now runs a private clinic south of Cleveland.
He treated him with dexamethasone, a steroid medication that was supposed to lower testosterone and 17-OHP levels but did not.
Pope faced a setback in October 2023 when her right ovary twisted, or the tissues that support it, twisted, cutting off blood flow and causing severe abdominal pain. She had emergency surgery in Erie to remove her right ovary and fallopian tube; This reduced the chances of getting pregnant, but did not terminate it.
After she recovered, she met with Laleh Razavi, an endocrinologist, or hormone specialist, at the Cleveland Clinic. Razavi wondered whether Pope’s high 17-OHP level was due to a late-onset form of congenital adrenal hyperplasia. This condition, which usually occurs immediately after birth, disrupts the balance of hormones produced by the adrenal glands located above the kidneys. But the tests Razavi ordered, including gene sequencing, were negative. Although he was born with one kidney, Pope has two adrenal glands.
Razavi had an MRI of Pope’s head in November 2024; These images showed a small tumor in the pea-sized pituitary gland at the base of the brain, which produces or controls many hormones. Pituitary tumors are quite common, but most do not produce excess hormones. Unless they cause headaches or impair vision, they are usually monitored and not surgically removed.
But some pituitary tumors produce prolactin, and Pope’s high levels of the hormone caused her to produce breast milk. When doctors gave her cabergoline, a drug that reduces prolactin production, her levels dropped and she stopped making milk. But on a follow-up MRI in July, the pituitary tumor looked the same, even though cabergoline was supposed to shrink it.
Meanwhile, the ovarian cysts on Pope’s left side had grown to 22 centimeters, the size of a football. Was the pituitary tumor somehow fueling this growth? A group of doctors met to discuss his condition.
“It is extremely rare to have a pituitary tumor that produces excessive signals that stimulate the ovaries,” said Varun Kshettry, a neurosurgeon at Cleveland Clinic who participated in the discussion. “Nobody’s ever seen this before… but it’s all we have left.”
Amid continued uncertainty, Kshettry performed surgery on Pope’s nostrils in October, attempting to remove the tumor without having to go through his skull. Tests showed that the tumor was a functional gonadotropic adenoma; This meant that it produced follicle-stimulating hormone; This overstimulated her ovaries and increased her estrogen levels sky high while also increasing her testosterone and 17-OHP. This type of tumor is thought to account for less than 1 percent of all pituitary tumors, according to Kshettry and Razavi. Kshettry said Pope’s tumor did not produce prolactin as initially suspected, but may have increased levels of that hormone by blocking the release of another hormone, dopamine.
back to normal
Shortly after the tumor was removed, Pope’s hormone levels returned to normal. Estradiol, the main form of estrogen, dropped from 11,378 picograms per milliliter a year before surgery to 41 pg/mL in the week after the procedure. She started menstruating regularly again. The ovarian mass shrank to 7 centimeters, the size of a tennis ball, and the abdominal pain disappeared.
“I feel good,” Pope said recently. “I’m stretching and doing sit-ups, things I haven’t been able to do for a long time.”
A CT scan last month showed his mass had shrunk further to its normal size, and he will be undergoing blood tests again shortly. If the results show healthy hormone levels, Razavi said the Pope would be considered healthy enough to try to get pregnant again. Pope said he wants to try it later this year.
Pope wishes it hadn’t taken nearly seven years after her miscarriage to find the root of her problem. But she’s glad she resisted having a hysterectomy. Removing her ovaries would likely reduce her pain and complications, Razavi said, but it wouldn’t address the root of the problem. The doctor said the pituitary tumor would continue to cause hormone imbalances that could affect her in other ways.
Pope said she’s happy to preserve the possibility of fertility regardless of whether she has more children.
“They wanted to take that option away from me because it was easy for them,” he said. “But just knowing that I have that option feels good.”
David Wahlberg has been a medical reporter for 30 years, including at the Atlanta Journal-Constitution and the Wisconsin State Journal in Madison.
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