After her visit with Dr. Lee in September 2023, Crystal soon learned that she had endometriosis, in which tissue similar to the lining of the uterus, called the endometrium, grows outside the uterus. Crystal鈥檚 symptoms were classic for the disease.聽聽also can cause difficulty getting pregnant, inflammation, and scarring, and affect nearby organs like the appendix, bladder, and bowel if it spreads.
Compounding her pain, Crystal also had adenomyosis, which Dr. Lee describes as 鈥渁 cousin to endometriosis.鈥 With endometriosis, the endometrial-like tissue finds its way听辞耻迟蝉颈诲别聽of the uterus, like the ovaries and fallopian tubes, while with adenomyosis the tissue grows聽into聽the muscle of the uterus.
Credit: NewYork-Presbyterian鈥檚 Health Matters
Similar to endometriosis, adenomyosis can cause painful and heavy聽, pelvic pain, pain during sex, and a feeling of fullness or bloating. It can also cause the uterus to enlarge.
Over the years, Crystal saw numerous doctors who had explored her symptoms. Some suspected聽聽and performed ultrasounds. 鈥淚 was told, 鈥榳e didn鈥檛 find anything,鈥欌 Crystal says. 鈥淚 was even getting, 鈥榤aybe it could be in your mind.鈥欌
Delayed diagnosis with endometriosis is not uncommon, says Dr. Lee. Recent聽聽shows that endometriosis is characterized by delays of up to 11 years from the onset of symptoms to a diagnosis.
Dr. Lee explains that while ultrasounds are helpful and rule out other conditions, 鈥淚t can鈥檛 tell us whether or not people have endometriosis,鈥 she says. 鈥淚 hear patients say, 鈥業 got an ultrasound and it looked normal so I was told I didn鈥檛 have endometriosis.鈥 Unfortunately, there are no great screening tools, and confirmation of the disease is made by surgery.鈥
Another challenge is that endometriosis symptoms are not specific only to the disease. People can have these symptoms for other reasons such as聽,听, or a gastrointestinal issue.
Indeed, Crystal had other issues, including diverticulosis and fibroids. In 2017 she underwent a procedure called fibroid embolization to remove her fibroids, which helped relieve her symptoms for a time. But the pain came back.
Dr. Lee sees many patients who have lived with endometriosis pain for years. 鈥淚 have a lot of patients who say, 鈥榃ell, my mom always had bad periods, and she told me this is just the way it is,鈥欌 explains Dr. Lee. 鈥淎 lot of this pain gets normalized. Unfortunately, this leads many to deal with the pain in silence.鈥
Credit: NewYork-Presbyterian鈥檚 Health Matters
The Road to Treatment
Dr. Lee took Crystal鈥檚 detailed medical history and performed a pelvic exam and ultrasound as the first steps toward a diagnosis. Crystal also had a magnetic resonance imaging (MRI), which showed adenomyosis and enabled Dr. Lee to see if Crystal鈥檚 nearby organs were affected by her condition, a helpful tool for planning Crystal鈥檚 surgery.
Treatment ultimately depends on each individual鈥檚 case. For mild endometriosis and adenomyosis, non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen can help manage pain, and hormonal therapy can help control bleeding and reduce pain. Over the years, Crystal was put on聽聽pills and pain relievers but never found relief.
For those who do not find relief with medical therapy, laparoscopic surgery is a good next step, says Dr. Lee.
Because Crystal wanted to be finished with her periods and her adenomyosis was significant, she chose a hysterectomy. Crystal was not interested in having more children, so this worked for her. But it鈥檚 important to note that a hysterectomy for endometriosis or adenomyosis is typically reserved for cases in which other treatments have failed, says Dr. Lee. There are fertility-sparing options for those who wish to become pregnant one day. 鈥淢ost of my patients choose fertility-sparing options,鈥 says Dr. Lee.
In November 2023, Dr. Lee performed Crystal鈥檚 hysterectomy 鈥 removing her uterus, cervix, and聽. This was done via laparoscopy, a minimally invasive surgery in which small incisions are made in the belly and a tiny camera is inserted to guide the procedure. Laparoscopy is also the gold standard for a definitive endometriosis diagnosis, enabling tissue to be removed for testing.
During the surgery, Dr. Lee saw that Crystal鈥檚 endometriosis lined the surfaces inside her pelvis, and that her adenomyosis was so advanced that 鈥渟he had a very enlarged and rounded uterus the shape of a grapefruit 鈥 which is not typical in a normal uterus. She also had a lot of scarring, likely from the combination of endometriosis, adenomyosis, and her previous cesarean section.鈥
鈥淚 could see as soon as we went in for surgery,鈥 says Dr. Lee, 鈥渨hy this would have the impact that it would.鈥
Living Life Without Pain
Today, Crystal鈥檚 pain is almost completely gone. She no longer wakes up with anxiety about her pain. She feels good enough to take daily walks, hit the gym, and run errands 鈥 activities she was unable to do before. She now works as a school lunch helper and is excited to get back into hobbies like cycling, an old passion of hers.
鈥淚 remember seeing her after surgery, and what a huge difference it seemed to make for her and her level of pain,鈥 says Dr. Lee. 鈥淪he looks very happy, very hopeful, and she just has so much energy.鈥
Dr. Lee stresses that if anyone is experiencing very heavy periods, bad menstrual cramps, or painful intercourse, they should see an endometriosis specialist.
Crystal agrees. She tells her friends with painful periods to make sure they get the treatment they need. 鈥淒on鈥檛 wait until the pain is debilitating,鈥 says Crystal. 鈥淚 want people to know that there is help out there. Dr. Lee gave me my life back. I鈥檓 sharing my story so that others can get the help they need and not feel so alone.鈥
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