As a teenager in the late 1990s, Stacy Webster had horrible stomach aches. For that, doctors correctly diagnosed her with irritable bowel syndrome. At the same time, starting with her first menstrual cycle, Stacy had severe cramps and painful periods. For that, doctors diagnosed her with—well, being a girl.
“They never said anything to me about endometriosis or that it was something they were exploring,” Webster said. “I don’t know if they didn’t know much about the disease or just didn’t believe me. All I know is I had to suck it up and deal with it.”
She did, for years. And with it came consequences.
“My life revolved around my period,” Webster said. “I’d be bedridden for two to three days and then have endo belly [though she didn’t know what that was] where I’d look and feel pregnant. I’d miss a lot of school and would always have to cancel plans. By the time I was in my mid-20s, I was just fed up. It was no way to live.”
But the only solutions doctors offered for Webster’s still-undiagnosed issue weren’t options for her.
“I just remember them all trying to push hormones and birth control on me,” Webster said. “I had tried birth control a couple of times before; they didn’t work, and the side effects were awful. But even more important was that my mom had just died of breast cancer, which is estrogen-based. I was now considered high-risk for getting it and did not want to take any fake hormones.”
Finally, while in her late 20s in 2014, Webster found a doctor who’d do a laparoscopic surgery.
“They diagnosed me during that surgery with endometriosis, but I think that’s all they did,” Webster said. “I don’t think they extracted much. They removed a fibroid, but I think their purpose was to just go in, see what was happening, and take out what they could see. I had zero relief from it.”
Webster continued to live with the pain while she and her husband tried to get pregnant. Unsuccessful, they eventually tried in vitro fertilization (IVF), and the treatments worked.
“We were blessed with a son in 2018, and since I didn’t have my periods during the pregnancy, all of my symptoms quieted down,” Webster said. “In fact, my periods were even manageable—still painful, but manageable—during the first couple of years after my pregnancy. But then they started getting really bad again.”
Webster’s symptoms were back to where they were when she was a teenager.
“I knew I had to figure this out, but I didn’t know the right path,” Webster said. “I just remember crying one day, not knowing what to do. Another surgery? A hysterectomy? I didn’t know what the best option was.”
About to turn 40 last spring and determined to find a fix, Webster decided to have an ablation surgery.
“I was naïve to think that it would help, and my gynecologist should have known that it wouldn’t do anything for my endometriosis,” she said. “The pain was still there.”
Soon after, a new pain emerged on her right side during her periods. Knowing she had to advocate for herself—something she learned while watching her mother battle cancer—Webster demanded that her gynecologist do an ultrasound. The doctor complied and found an ovarian cyst that measured two centimeters. Though the doctor said it wasn’t an immediate concern, Webster had a hunch that more was happening inside her.
She saw an endometriosis specialist for the first time in November 2024, one she’d found online. He talked with Webster extensively and offered several options, including a hysterectomy, which Webster was open to. Webster liked the doctor, but she was nervous. After all, she’d been to so many physicians over more than 25 years and nothing had changed.
Webster returned to her gynecologist in December to see if she’d do more extensive tests, but she refused. She said she’d do a hysterectomy, but it would be February before she could do it. That doctor’s partner said she couldn’t do it until April.
“I couldn’t wait that long,” Webster said. “The pain was down my leg. I couldn’t work out. I was forced to stay home a lot. I felt like nobody was taking me seriously.”
Webster called the endometriosis specialist in January. Much like her first visit with him, he talked at great length with her and assured her he could perform a hysterectomy within two weeks.
“The stars had finally aligned,” Webster said. “I told him I’d do it.”
The specialist did robotic surgery and removed significant amounts of endometriosis before the hysterectomy.
“The endo was getting close to my kidneys, which was so critical because it’s known as the silent kidney killer,” Webster said. The disease was also on her sciatic nerve, which explained the leg pain. In addition, the surgeon removed Webster’s uterus, cervix, fallopian tubes, right ovary, and that cyst, which had ballooned from two centimeters when it was first found to eight centimeters at surgery.
“I wanted to share my story to help others because if I’d known when I was young what I know today, even a little bit of it, it could have helped me,” Webster said. “Sometimes people don’t believe your pain because they can’t see it, or they see a post on Instagram where you look good and assume everything’s fine, but that’s just a sliver of life. That’s why you have to be your own advocate and push for people to understand that your pain is real.”
Webster is home recovering and feels better than she has in years. While she still has a ways to go and knows she’s not out of the woods yet, she received a comforting sign when she woke up from surgery that she’s on the right path.
“My nurse’s name was Susan,” Webster said. “That was my mom’s name.”
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
