Lauren Jennings remembers her chronic pain started with her first cycle when she was only 13 years old. The pain seemed intense to her, but friends, family, and doctors reassured her that it was normal and a part of growing up.
“Even my gynecologist told me that it’s normal, and that I’d grow out of it. But I never grew out of it,” she said. “It got frustrating, because you have doctors who tell you you’re fine, and you’re not. You can’t feel someone else’s cramps to know—you can’t feel someone else’s pain.”
In addition to bad menstrual pain, Lauren found that stomach, bladder and dull back pain also followed her through middle school into high school. Even after seeing multiple gastroenterologists and urologists, no one was able to find a reason for her pain.
Lauren said it was very difficult to convey to friends and family exactly when she was in pain, because that chronic pain became part of her everyday life. “Unless it was really bad, that dull pain was normal—it never went away, so I never noticed it being there, either,” she said.
I finally went to my gynecologist and said, ‘There’s something wrong with me and you need to figure it out.’
Her pain not only affected her physically, but mentally as well. During times when the pain was less intense, Lauren said she lived in fear of it returning. “I would have anxiety attacks because I was just waiting for it to come back,” she said. “I had constant dull, annoying pain, but I would just kind of have an outburst out of nowhere, and it would double me over in pain.”
Living with an Invisible Disease
Lauren’s gynecologist tried different oral contraceptive pills to relieve her bad cramping. When no birth control method helped, Lauren’s gynecologist prescribed Seasonique, an extended cycle combined hormone contraceptive, to reduce the number of periods she had.
“I was on birth control pretty much since my first cycle, because my cramps were so painful,” she said. “I went on Seasonique because I thought if the medications weren’t going to make it any better, I was going to get my cycle as little as possible.”
When she realized after becoming sexually active that intercourse was painful as well, Lauren knew something was wrong. “I finally went to [my gynecologist] and said, ‘There’s something wrong with me and you need to figure it out,’” she said.
After finding evidence of endometriosis in her uterine cavity, Lauren’s gynecologist told her removing it would cause scarring and make her condition worse. Instead, she prescribed 6 months of Lupron, followed by an oral contraceptive to suppress Lauren’s period, and hoped it would reduce her symptoms.
The Lupron put Lauren in a state of medical menopause. But for the first time in recent memory, her symptoms began to subside. She decided to endure the hot flashes and other menopausal symptoms in exchange for a reduced sense of pain. However, while on vacation, Lauren’s pain came back.
That appointment specifically, was life changing. Because finally, everything that never made sense got put together.
“I ended up in a medical aid unit on vacation in North Carolina because I was in so much pain. I went to my gynecologist right after I got back,” she said. “She thought I had a cyst, so I had to get an ultrasound.”
When the ultrasound results came back clean, Lauren refused her gynecologist’s suggestion to continue Lupron and birth control. While her gynecologist was able to help her thus far, she felt she needed to see an endometriosis specialist who could help manage her symptoms.
Making Sense of Chronic Pain
Lauren scheduled an appointment with Dr. Barbara McGuirk at Reproductive Associates of Delaware (RAD) after a referral from her gynecologist. “That appointment, specifically, was life changing,” Lauren said. “Because finally, everything that never made sense got put together. She was the first person who didn’t make me feel like I was crazy.”
At the appointment, Dr. McGuirk surprised Lauren by linking all her other pain symptoms together with her endometriosis. “It was all intertwined: my back pain, bladder issues, digestive issues—all of that. It was eye opening for somebody to finally just tell me that,” she said. “All these things that I had been dealing with, she said, ‘No, this is all related to this disease. It takes over everything.’ It was relieving to know.”
Dr. McGuirk scheduled Lauren for a hysteroscopy and laparoscopic surgery. Lauren said she had mixed emotions before her procedure. “For this surgery, I was nervous, but I was beyond ecstatic,” she said. “I just wanted it done.”
Prior to surgery, Dr. McGuirk also went over Lauren’s diet, and recommended she change to gluten-free and soy-free products. This meant giving up more convenient foods and planning her meals. “It was hard to give up convenience foods because when you have the time to make your food, it’s not hard to eat gluten-free,” she said. “But when you don’t feel like packing your lunch, you can’t just grab something anywhere.”
It affects your personality, it affects the relationships you have with people, it affects your work – it affects everything.
One thing that helped Lauren was the fact that her father was willing and available to help plan her meals, study food labels, and cook new food. She said she was resistant to her new diet at first, but reconsidered when she realized not adhering to it might affect her treatment.
“That was the hardest thing for me,” she said. “I didn’t want to do it for so long because I felt like this disease had already uprooted so much of my life. It was almost bitterness towards the disease itself.”
Looking Back on Years of Pain
Dr. McGuirk didn’t tell Lauren she would be completely pain-free when she woke up from surgery, but she did promise Lauren her back pain would be gone. “I remember waking up from surgery and my back didn’t hurt,” Lauren said. “I woke up from anesthesia crying and going on rants because it was such a relief. This weight was finally lifted off of my shoulders.”
During surgery, Dr. McGuirk found Lauren’s bladder was stretched out, and endometriosis had covered her colon, bladder and ureters. “Dr. McGuirk explained my endometriosis is the kind that takes over,” she said. “It sticks to everything, so nothing was functioning the way it was supposed to.”
Although pain-free for just a short time, Lauren is eager to begin a new life without chronic pain. “I knew it was going to be a process afterwards, but I’m confident in [it],” she said. “It’s going to be good and it’s going in the right direction.”
“It’s been a really long, frustrating road,” Lauren said. “Looking back, I’ve probably dealt with this about half my life. That’s a scary thing to think about—being in chronic pain for half your life.”
Specifically, she said she is still realizing how endometriosis controlled her life for so many years. She attributes her chronic pain to becoming more introverted than she would have been, and to missing out on school and social events. “It’s a disease nobody can see that takes over your body and takes over your life,” she said. “It affects your personality, it affects the relationships you have with people, it affects your work—it affects everything.”
When you finally realize you’re not by yourself, it makes it easier to deal with because even if you’re sitting in the dark, you’re not sitting in the dark alone.
Lauren said the staff at RAD and the offices’ central locations made going through treatment easy. “It can get stressful with other doctors when they schedule you for tests, because you have to worry about finding time to go here and there,” she said. “Here, I could show up at one place, and you guys make it as easy and stress-free as possible. [RAD] make[s] an ideal situation out of a horrible situation.”
Spreading the Word About Endometriosis
For women experiencing chronic pain and unsure what of to do, Lauren said not to hesitate in finding someone who will help. “No matter what any doctor tells you, if you think there is something wrong with your body, listen to that,” she said.
By raising awareness of endometriosis by sharing her story, Lauren hopes young women with chronic pain will seek out care. “As much as it’s invisible to everyone else, we need to stop letting it being invisible,” she said. “You can’t stop it from happening, but you can stop people from living with it.”
“The biggest thing is getting the word out and having people understand chronic pain isn’t normal, especially with young girls,” Lauren said. “But when you finally realize you’re not by yourself, it makes it easier to deal with because even if you’re sitting in the dark, you’re not sitting in the dark alone. You have somebody else there.”