Ever since she was a teenager, Ashleigh Thiel, now 37, would dread her menstrual period.
Every month she would suffer pelvic and abdominal pain so severe it would drive her to tears.
Knowing that this could not be normal, Thiel started seeking medical help from various doctors in the Los Angeles area when she was 19. But doctors told her there was nothing medically wrong with her. Some put her on hormones and prescribed pain medication to ease her symptoms, but the relief she felt was only temporary.
"I just had to deal with it," she said. "The first three days of my period were excruciating."
A possible clue
When she was 22, Thiel found out that her aunt had suffered from endometriosis, a disorder that causes tissue called endometrium, which lines the inside of the uterus, to spread and grow throughout the pelvis. This abnormal growth, which affects one in 10 women, causes pressure and severe pain.
Thiel wondered if she also suffered from the painful disease that hampered her aunt. She renewed her efforts to get answers and asked her gynecologist to perform laparoscopic surgery on her to receive a proper diagnosis.
After the procedure "the doctor told me I was ‘as clean as a whistle,’ and nothing was wrong with me," said Thiel. "At the time I was thinking, well, that’s disappointing. I still had no answer for what was causing my pain." (She later was told that the camera used during the laparoscopy had malfunctioned.)
Thiel's painful periods continued, forcing her at times to seek help from emergency department doctors.
“One doctor even told me that maybe I should just have a baby to see if that would help," she said. "He literally said that to me. It was infuriating.”
Finally finding the right doctor
After many more years of dreading her period and living with the pain, Thiel was referred to UCLA Health. In January 2022, she had her first appointment with Daniel N. Ginn, DO, a UCLA obstetrician and gynecologist who specializes in the treatment of endometriosis, pelvic pain, and other gynecological diseases.
After meeting with Thiel and properly diagnosing her, Dr. Ginn and a UCLA surgical team performed a 4 ½-hour surgery to remove all the spreading endometriosis, performed a hysterectomy, and removed her diseased appendix.
Thiel now feels better than she has in decades.
“Going ahead with that was the best decision I ever made,” Thiel said. “Dr. Ginn is a lifesaver. He deserves all the accolades he ever gets. I can’t imagine how I would have gone forward in life without this.”
Dr. Ginn said difficult, often mysterious, cases of pelvic pain like Thiel’s were what prompted him to choose his specialty during his residency at the University of Tennessee College of Medicine. He then completed fellowship training in Minimally Invasive Gynecologic Surgery at the University of Louisville.
“I found myself drawn to difficult surgical cases like this, knowing that most of these patients can be helped in some way, even if they haven’t found that help yet,” he said. “These patients do not have to live with this pain. We can figure something out to help them – I enjoy the challenge of trying to solve the problem that is hurting them.”
Thiel said that in her first meeting with Dr. Ginn, she felt a sense of confidence that there actually might be a medical reason for her many years of suffering.
“He has the most amazing bedside manner,” Thiel said. “He understood exactly what was going on with me. He gave me all of the serious medical information about my condition and the surgical options to treat it. And then he actually asked me what I wanted to do.
“I told him to take it all out – this has done nothing but bring me pain,” Thiel said. “Now I finally feel like I have my life back, and it’s all because of Dr. Ginn.”
Advocating for women
Thiel said she now wants to be an advocate for women’s health, especially involving endometriosis.
“If it affects so many women, it should be something that most doctors should know about and know how to deal with,” she said. “I didn’t get the right care – for years. If I had been treated properly years ago, I would still have a uterus and I would still have the option of having a biological child. I just don’t want other women to have to go through what I experienced, when there is a solution available.”
Thiel, who works in Hollywood as a professional make-up artist, said that before she saw Dr. Ginn, “not only did my problem not get solved, but doctors acted like I was imagining the pain, or had a low pain threshold, or was just going after pain medication. It was really frustrating and unnecessary, when they should have been offering real help.”
Dr. Ginn said those are common feelings for women with endometriosis. He likes to assure them that their emotions and concerns are legitimate, and whatever level of pain they are suffering is valid and they deserve a proper medical solution.
“We see this a lot, where maybe patients don’t have access to the right kind of medical care, and sometimes doctors just do not believe them when they talk about their pain and symptoms,” Dr. Ginn said. “Sometimes they are pretty much made to feel like they are just crazy. But no, that is not a valid explanation.”
Diagnosis, itself, requires patience, Dr. Ginn said, as women in early stages of the disease, with small growths or lesions, can still have extreme pain. On the other hand, women in advanced stages, with large growths, might have mild symptoms, and the disease can go undiagnosed if doctors are not careful.
He said doctors need to be educated that pelvic pain in a woman should immediately raise a red flag, as should menstrual pain that can’t be solved by simple medication such as ibuprofen or acetaminophen.
“Lots of patients leave our office in tears, because finally someone believes them,” Dr. Ginn said. “Often when they come in, they are actually kind of defensive, because of their previous experience. It’s a pretty big deal for people, to have someone finally believe them.”
Dr. Ginn’s goal beyond treating patients is to teach other doctors how to approach complaints of pelvic pain, to consider the possibility of endometriosis, and to find solutions.
“There is no one silver bullet for solving all of them. That just is not the case,” he said. “These aren’t simple cases that can be solved with quick appointments. You just have to be committed, both doctor and patient, to getting the problem solved.”
For her part, Thiel is enjoying life free of pain, looking forward to her 38th birthday in August, and a long healthy life.
“It took me 18 years just to get the right diagnosis,” she said. “That was a long and frustrating road, but right now I am just very grateful for the outcome.”
Learn more about endometriosis and UCLA Health’s chronic pelvic pain services.
Tina Daunt is the author of this article.