Endometriosis changed her life, but this woman never stopped looking for relief

Endometriosis blew apart her life, said Alison Landolt, president and co-founder of the Endometriosis Foundation of Houston. Today, she shares her story with the hopes of saving others from the suffering, challenges and low points she experienced in her search for relief.

Question: Why is it important for women to speak about their experience with endometriosis?

Answer: It’s such a lonely disease. Endometriosis is as common as asthma or diabetes, but painful periods are taboo to talk about so people feel silenced. I want women to know they aren’t alone and their symptoms and condition are real. I want to help them learn what’s worked for others. This way, they can get the diagnosis and treatment they need to start building the life they want.

Q: Let’s talk about your journey. When did you first start having symptoms that you did not think were normal?

A: I’ve always had painful, extremely heavy periods. I can’t tell you how many times I had to call my mom and have her bring a change of clothes to school. As a teenager, it was mortifying. My sister had painful periods, so I learned the word endometriosis from her. When I brought it up to my pediatricians, I was told everyone has painful periods.

Q: That’s a long time to suffer in silence. What changed?

A: In college, I went on birth control and for the first time, I had a regular cycle with normal bleeding. But I often had diarrhea and vomiting, and it worsened. With no diagnosis, I was prescribed proton pump inhibitors to reduce stomach acid production. I’m still on them today.

After a series of major life stressors, during which I also changed my birth control, I started having debilitating pelvic pain and irregular cycles again. I went to the gynecologist, and had an ultrasound. They recommended a “wait-and-see approach.”

Q: What did the ultrasound show?

A: My symptoms worsened, so I asked for my ultrasound report. It showed a possible cluster of paraovarian cysts or hydrosalpinx – dilated fallopian tubes filled with fluid and blocked. I couldn’t believe I wasn’t told my fallopian tubes could be destroyed. I was 27 and single with no children.

A gynecologic surgeon said an untreated sexually transmitted disease led to pelvic inflammatory disease and destroyed my fallopian tubes. She recommended surgery before they ruptured. I asked if it could be endometriosis. The answer: “Absolutely not.” I had the surgery, and there was nothing wrong with my fallopian tubes. There was no sign of an STD or PID. I had endometriosis.

Q: Did they treat the endometriosis during the surgery?

A: The surgeon burned the (endometriosis) lesions, an approach that can promote scarring and disease growth. I had a month or two of relief before my symptoms returned. The pain before was nothing compared to what I experienced then.

I was in my fifth year of getting a doctorate in clinical psychology, but was too sick to continue. I moved back in with my parents and spent the next two years in massive pain and overwhelming fatigue.

Q: Did you find an endometriosis specialist to follow you?

A: I was referred to a doctor “who had some patients with endometriosis” who prescribed Depo-Provera, an injectable contraceptive, to suppress my estrogen. The side effects were horrible headaches, hot flashes, cystic acne, and I worried about my bone health.

I was prescribed antibiotics by a urologist for constant urinary tract infection symptoms. After doing endometriosis research, I requested pelvic floor physical therapy for spasms. It was life-altering. Pelvic floor dysfunction caused the UTI symptoms and was the only thing that helped. It made me realize I needed excision surgery. (PT) was very empowering.

Q: Did you have the excision surgery?

A: Yes; the second surgery took me from being completely debilitated to functioning, but the surgeon found widespread disease. In addition to rectum issues, my left fallopian tube, ovary and ureter were scarred together against the pelvic wall.

Q: How did the third surgery change things for you?

A: Dr. Xiaoming Guan diagnosed me with Stage 3 endometriosis. He was able to remove the remaining disease and repair the area while preserving my reproductive organs. He also found a uterine cyst that went through all the layers of my uterus and was able to remove it.

Today, I have zero endometriosis pain and very little scar tissue pain. My GI symptoms are much better, but I still struggle at times. If I decide to have children, I now have that option.

Q: How can women avoid going through what you’ve experienced?

A: Don’t be afraid to talk about it because endometriosis isn’t a dirty word. Educate yourself and find an endometriosis group. Online resources like Endo Warriors and Nancy’s Nook really helped me with questions I should ask doctors. I went to a screening of “Endo What?” in Houston and met so many people with similar experiences. Several of us created the Houston-Area Endometriosis Group which became our nonprofit organization. Today, we use our experiences to help others in our community.

Q: Looking back, what would you have done differently?

A: I wouldn’t have had that first surgery because it made it worse. If I could have gotten to someone experienced like Dr. Guan faster, that would have made a big difference. And I’d have excision surgery earlier.

It’s easy to feel like a failure. I didn’t finish my doctorate, and my career was completely derailed. But my education and training were paramount to getting through this disease and turning it into something more. An important part of my healing has been teaching others how to traverse this experience in a better way. We’re making a difference in people’s lives.

To meet Alison and learn more about endometriosis, join the department of Obstetrics and Gynecology at Baylor College of Medicine as they host a special screening of “Below the Belt,” a powerful documentary on women’s health and healthcare told through the lens of endometriosis. A panel discussion with Baylor endometriosis specialists will follow. RSVP now.

Story by Sharon Dearman, a writer with the Department of Obstetrics and Gynecology. This interview has been edited for length and clarity.