A woman who noticed a lump on her leg spent weeks fighting for a diagnosis, with doctors even suggesting it could be cellulitis or even endometriosis in the skin. But nothing could prepare her for what a biopsy revealed.
Jacquelyn Aleece was on vacation with her husband and friends in early July when she discovered the small bump on her shin. It felt tender, as Aleece, 40, told that she wondered if she’d “been clumsy” and walked into something.
Strangely, she couldn’t remember knocking her leg against anything to cause bruising.
“It was a dull pain that I ignored for two weeks so I could enjoy our vacation in Europe,” Aleece, who splits her time between New Jersey and California, said.
The group was traveling for a friend’s 40th birthday, and she certainly didn’t want the pain to ruin the trip.
By the time Aleece returned home weeks later, the pain was worse and there was redness around the lump. It had also gone from being one solitary bump to two lumps, which “was concerning” to say the least.
Aleece showed the lumps to her sister-in-law, who rushed her to the emergency room as they feared it could be an infection. Doctors agreed and put Aleece on a course of antibiotics.
“That started a long journey with multiple urgent cares, ERs, and specialist visits. The two bumps then turned into four, and the pain was so bad I couldn’t even put weight on my leg or walk for four days,” Aleece said.
Aleece was back and forth for weeks, hoping for clarity about why she was in so much pain. Antibiotics made no difference and symptoms continued to progress.
In early August, she met with a dermatologist who was “incredibly thorough” and went through a range of underlying conditions that cause inflammation. The dermatologist also asked about Aleece’s medical history, leading to a lengthy discussion about her experiences with endometriosis over the last 30 years.
Endometriosis was previously found on Aleece’s ovaries, liver, bowels and fallopian tubes. She’s had numerous surgeries (her first at the age of 21) including deep excisions on her bowel, colon, liver, and ovaries.
As a result, the dermatologist suggested that the lumps in Aleece’s leg could in fact be endometrial-like tissue.
“When she told me that it was possible to have endometriosis-like tissue in my leg, I was in shock because I have battled this for so long in my pelvic region, and now it may be infiltrating my leg? I couldn’t believe that this disease was going to make another part of my body feel such pain,” Aleece told .
Dr. Trisha Shah, a reproductive endocrinologist, explains that endometriosis is a chronic inflammatory disease that occurs when “hormone-sensitive tissue implants and grows” outside of the uterus.
The Office on Women’s Health suggests that over 11 percent of American women between the ages of 15 and 44 are impacted by endometriosis. This amounts to more than 6.5 million women in the U.S.
The most common places to develop endometriosis are behind the uterus, ovaries, fallopian tubes, but in rare cases, it can appear on the lungs, brain or skin, according to the Cleveland Clinic.
Aleece has battled the condition for many years, causing “excruciating pain” during periods and severe fatigue that regularly interrupted her lifestyle.
“I powered through it and have lived a very full life, but the struggle was always there,” she told . “Symptoms were often dismissed by family, friends and doctors. It felt very isolating, and it makes you question your sanity at times. I also damaged my body trying to treat symptoms of pain instead of the root cause.”
The lumps on her leg are still incredibly sore and make walking difficult. As the pain progressed, Aleece’s leg was swollen and throbbing, as she said it felt like it was about to explode.
As she searched for answers, Aleece posted about her experience on TikTok (@jacquelynaleece). A video suggesting the lumps on her leg may have been endometriosis went viral with over 3.3 million views and 124,700 likes on TikTok at the time of writing.
A biopsy taken of the leg tissue and the diagnosis was even more perplexing.
Aleece has now been diagnosed with erythema nodosum, a condition causing fat within the skin to become inflamed. It only affects one to five people in every 100,000, and it can cause bumps in the legs, buttocks, calves, ankles, and thighs.
The condition can be the result of an infection, but it may also be the result of several underlying conditions. Among them, the Cleveland Clinic highlights ulcerative colitis, inflammatory bowel syndrome, and lymphoma.
Reaching a diagnosis has certainly been a turbulent experience for Aleece, and she is still left with countless questions.
She told : “Over the last two weeks I have had a colonoscopy, mammogram, full body MRI, blood tests, stool tests and more. We are working as a team to rule out many factors. It could also have been triggered by an endometriosis flare up since endometriosis is a whole-body inflammatory disease—in which case we may never know exactly what triggered my flare.”
Aleece hopes to encourage other women to speak up if they have any concerns. It would have been easy to give up without answers, but Aleece wants to see more people prioritize their health and trusting their instincts.
She said: “I want women to start prioritizing their health by feeling empowered to use their voice when seeking medical care. If a doctor is gaslighting you, find a new one. See as many doctors as you need until you find somebody who will listen.”
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