A conversation about endometriosis with sisters Catherine Lee and Lauren Lee-Crane

Lots of women can relate to period-related pelvic pain as part of their menstrual cycle. Though the discomfort can range from annoyingly achy to downright miserable, period pain can be an unpleasant reality wherever our bodies fall on the spectrum.

But imagine that the pain is so extreme the usual treatments like hot water bottles or meds can barely make a dent. That’s often the tell-tale sign that there might be something more going on than severe PMS. For many women, this is the first sign they have a condition called endometriosis.

For women with endometriosis, the cells that usually shed from the uterus during menstruation actually grow outside of the womb, often on the fallopian tubes, ovaries, and bowel — but they can grow in any part of the body. Endo may cause pain, very heavy periods, and gastro-intestinal issues that can mimic the symptoms of other conditions like irritable bowel syndrome. 

Even though these cells are living outside the uterus, they still shed and bleed when menstruation occurs. But, with nowhere to go, it accumulates and can form scar tissue on nearby organs. Cysts called endometriomas may also form — giving the disease its name. The effects of all of this can extend beyond miserable cycles to infertility. Most common in women between 25-40, it is often misdiagnosed as a form of severe post menstrual syndrome. And that’s exactly what happened to the two women Jeanie Dizon is talking to this month.

Catherine Lee and Lauren Lee-Crane are the twin sisters behind Atlanta lifestyle blog AsianCajuns. They are also the developers of Semaine, a plant-based supplement for the week of your period designed to reduce inflammation.

They are sharing their experience with endometriosis with Conversational so that women may learn more about a condition that still has so much mystery around it.

Jeanie: When and how did you first find out you had endometriosis?

Lauren: It often takes nine or 10 years to get diagnosed because it’s taken for granted that period pain is normal. I’ve always had painful periods and, in my teens, that meant really painful uterine cramps and heavy bleeding. As I moved into my late twenties that pain switched from “normal” cramping to a sharp jabbing pain in my pelvis. My period would feel like I was sitting on a bouquet of dull knives while simultaneously feeling like everything in my pelvis was being pulled downward. I researched my symptoms and self-diagnosed at 28 but didn’t have my first endometriosis surgery until I was 30. Technically, surgery is the only way to confirm the diagnosis. So, for me, it took 15 years to get diagnosed. 

Catherine: There is a high genetic link. Our Mom had it, but she didn’t discover it until she had a C-section while giving birth to us. But even though we’re twins, we have different symptoms and stages of endometriosis. Lauren has stage 4 endo, with more severe pain, while I have stage 2. 

Jeanie: Do the symptoms affect your quality of life? Do you experience symptoms only during the week of your period or can it be a day-to-day struggle?

Lauren: If I know it’s the week of my period, I can barely manage to go to work. I would rearrange things, not go out with friends, and be at home as much as possible. But a lot of women have pain throughout their menstrual cycle, not just their period, so they’re dealing with that every day. They ask: “What’s my pain level today? Is it so much that I can’t sit at my desk for work?”

Catherine: I wasn’t able to go to work 2-3 days per month. The days I could, I wouldn’t have pain but extreme exhaustion. There are some women who are in so much pain they can’t even work or have to find jobs where they have to work from home. It can be that bad. It is true chronic pain. The hard thing is it’s not visible. 

Jeanie: It sounds like the symptoms can vary greatly from woman to woman. At the very least, you’re expected to carry on as if things were perfectly normal. What treatment options are out there? What has your experience been on the road to relief?

“Birth control just acts as a stopgap: if you only have pain when you menstruate, birth control can be used to skip periods. It isn’t actually treating the disease.”

Catherine: Many doctors recommend birth control. Birth control just acts as a stopgap: if you only have pain when you menstruate, birth control can be used to skip periods. It isn’t actually treating the disease. Plus, birth control isn’t necessarily a great treatment because the side effects can undermine pain relief. When we first started oral birth control as teens, we would essentially get morning sickness. A true cure for endometriosis doesn’t exist because there isn’t enough research on what causes it. Back in the day, women would just have hysterectomies to cure it, but that only works if that’s where the cells are growing. Some doctors even recommend pregnancy because your body stops having periods.

Lauren: Pregnancy can stop the symptoms for a little while because you stop getting your period, but that isn’t really a “cure” either, especially because 30% of women with endo are infertile. Women with endo often struggle with fertility.

Catherine: There are only a handful of endometriosis specialists in the world, and Atlanta’s Center For Endometriosis Care is one of them. They usually do an excision surgery vs ablation. At first, the treatment was a hysterectomy, then ablation, and now excision is the recommended surgery. A lot of women experience regrowth after surgery because not enough cells are removed. Surgery is the gold standard for treatment, but it doesn’t get everything out. I had no pain after surgery during my period, but then the pain started to come back. 

Jeanie: Has endometriosis changed your views on starting a family? Pregnancy is challenging enough even without taking endometriosis into account...

Lauren: Deciding whether or not to have children is already an emotional and financial question. But with endo fertility issues, having the choice taken away from you is difficult. Hormone treatments and IVF could potentially work, but they can also increase the number of endometrial lesions in your body. So, it’s a really hard decision. Many women do have a lot of pain around sex but don’t like to talk about that. It’s another thing to overcome.

Catherine: To me, the sadness comes from not trusting the way my body works. I would be terrified the whole time that my body would do something totally wrong.

Jeanie: In your opinion, how can women with endometriosis best advocate for themselves? 

Lauren: When you see your doctor, don’t feel like you’re ever being too pushy. If you need an ultrasound, ask for the ultrasound. Make a list of all your questions and points you have for them and take them with you. 

Catherine: You’re going to feel vulnerable. Boost your confidence by joining the Facebook groups and support groups.

Lauren: I think Nancy’s Nook is the best Facebook group for endo sufferers. 

There is still a long way to go towards finding a cure for endometriosis, and most treatments involve managing symptoms without addressing the root causes of the disorder. We hope that by sharing Catherine and Lauren’s story, we can open up the conversation and get closer to understanding not only why our bodies hurt but also the best ways to help heal the pain.