What was the beginning of your endometriosis journey like before you knew what was happening?
I was 16, and I heard a youth pastor talking about her experience with endo. I thought, that sounds like me. I didn’t start experiencing severe symptoms until college, and saw my first GYN when I was 21. He told me I didn’t have endo, during a normal pelvic exam, because he “couldn’t see it.” I had heavy bleeding (through super plus tampons in 2 hrs), and severe pain while on my cycle (not being able to get out of bed on days 1-2).
When were you diagnosed, and what was your journey to getting diagnosed like?
I was trying to get pregnant, and 2 years had gone by. I was 30, and found a new OB/GYN. He explained the symptoms I had been having since my teens, and he did a blood test and an ultrasound. He found my hormone levels were off (PMOS) and a large fibroid and chocolate cyst on my right ovary. Once they were removed surgically, the test results came back with endometrial cells in the cyst and I was diagnosed. It took from age 16-30 to find a person who could diagnose me.
What did it feel like to finally have a name for what you were experiencing?
mixture of relief, I told you so, and being scared that I would never be able to have children naturally.
How does endometriosis show up in your body and daily life?
Exhaustion is a huge symptom for me. I could sleep for 12 hrs, and still feel like I need a nap half way through the day. I also have random shooting pain in my hips and ovaries usually around ovulation and my period. Lastly, I experience gal bladder pain around my cycle.
How would you describe the pain or physical challenges of endometriosis?
When I was struggling with my fibroid and cyst, the pain and bleeding kept me from days of classes and work. I would have to leave work to go change clothes if I didn’t remember to bring extras with me. I also struggle with severe anxiety that cycles around my hormone levels throughout my cycle.
Do you have “good days,” and if so, what do they look like?
I do have more good days than bad now. I have days of higher energy, where I’m able to get chores and things accomplished. Also, since my myomectomy (removal of my fibroid), my period has regulated to “normal” (less pain and way less bleeding), so I am able to function regularly during my period.
How has endometriosis affected your education, work, routines, or ability to make plans?
The biggest hindrance of making plans is my anxiety. I used to have to plan around my period, just from the pain or bleeding issues. I would be absent from school or work because of it. Now, the anxiety that comes with it makes it so I don’t want to go out or be around people during my cycle.
Has endometriosis had an impact on your finances or access to care?
Endometrois has had an effect on my ability to get pregnant naturally. As a result, I’ve had to have multiple surgeries and procedures just to carry a pregnancy. That has a huge impact on my finances, as not all care is covered by insurance (especially related to infertility). I also had to have a C Section with my child because my uterus was connected to my small bowel so that was an unexpected expense at the end of my pregnancy.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My current OB/GYN has been amazing with my diagnosis. He’s the one who diagnosed me at age 30, and is still encouraging me at age 41 to try for a 2nd child. Prior to him, I felt like I was being brushed off. Every time I went to the ER for my cramps, I was told it was “normal” and sent to my GYN. Every GYN I saw prior to my current Dr. told me nothing was wrong.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I have had a large fibroid and a chocolate cyst removed. A year later, I had a polyp removed. I was put on birth control for a year to regulate hormones. I have had 4 IUIs that resulted in 0 pregnancies. I have changed my diet more times than I can count to help with inflammation for PMOS and Endo.
What has it been like to live with a condition that often isn’t visible to others?
I don’t mind telling people about my diagnosis and what it means. I talk about it and post about it on social media a lot. My entire TikTok is me talking about things I wish I had known sooner, Drs, and stories from my condition. I try to normalize the struggles that women go through in the health system, because 7-10 years for a diagnosis is unacceptable.
The hardest thing to explain to people is the amount of tired that I am. I don’t let the exhaustion show at work, but I’ve told people and they say “I had no idea, because you don’t look like you’re tired and in pain.”
Have there been times when you felt dismissed or not believed about what you were going through?
By doctors yes. By my family, no. By my husband, he’s never said anything dismissive, but I think he tends to get annoyed or doesn’t quite understand my energy levels, and anxiety levels.
What has the emotional or mental side of living with endometriosis been like for you?
Emotionally, it’s hard. Especially with the infertility piece. It’s hard to watch other women’s bodies do what they were designed to do, so easily, and sometimes accidentally. Meanwhile, there are those of us out there who have to look at the science of why things work the way they work, and try to work with that, and it still doesn’t always work out how you want or expect it to.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
In a way, it’s helped me become more in tune with my body. I can tell when there is something wrong with me much faster than if I didn’t have to constantly worry about what’s going on inside of myself. I actually have developed more of my sense of self, just because of condition. Not that it defines me, but I know that if I’m able to survive through it, then I can help others do the same, and help normalize women’s health.
How has endometriosis affected your family relationships, friendships, or dating life?
It hasn’t, aside from my brothers and husband learning that women have a uterus, they bleed from it, and they aren’t afraid to talk about the issues that women can go through involving their bodies.
Has endometriosis had an impact on intimacy or your sexual life?
Yes. It makes it difficult to want to be intimate when there is pain during sex. Also, my hormone levels don’t always put me “in the mood” so sometimes it feels like “fake it till you make it.”
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
It has been a big factor in my fertility, especially around trying to get pregnant a 2nd time. It has taken 5 years of planning, trying (with 4 IUIs), and deciding that IVF is our last option to have another child. My endo is making it more difficult as it continues to disrupt my insides. I know that both tubes are now blocked (when they weren’t with my 1st pregnancy).
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Talking about it is my coping mechanism. Helping people to understand what endo is, and what it can do to a woman’s body helps me to understand it better.
Do you feel supported in your journey? Who or what has helped you most?
Yes. My mother has helped with as many stories as she can give about her mother and her own “female issues.” Also, a community of women that I know have dealt with endo before they even knew they had it, or felt comfortable talking about it. Just knowing that I’m not alone in this journey helps.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes. It is a very supportive group of people, and it really helps to know that so many other people are going through the symptoms of endo.
How has your relationship with endometriosis changed over time?
I have accepted that it is part of me, and it may never truly be healed in my lifetime. But, that doesn’t mean that there will never be a cure.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I think the medical community was very much behind in the understanding of endometriosis. However, I think they have come leaps and bounds in the last few years when it comes to women’s health in general, and I am encouraged to see the steps the medical community is taking in prioritizing endometriosis.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I think as of right now, endometriosis feels like a “hot topic” in the media just because famous people have come out and used the platform to talk about their health issues surrounding it. I think that helps for sure, but it also makes it look like it’s a new issue, and that women haven’t been suffering with it for forever. They also still make it look like just a “heavy period” and not a whole body issue that is more like a cancer.
What would you like more people to understand about endometriosis?
It is more dangerous than it seems from the outside, just like cancer. It has the ability to grow on it’s own, even with a hysterectomy. It also can grown anywhere, not just the pelvis. It can be asymptomatic, but severe. It also can be very symptomatic, but still stage 1.
When you think about the future, what fears, concerns, or hopes do you have?
I am afraid that as I get older, and endometrosis continues to grow inside my body, that eventually I will have to have major surgery for a frozen pelvis. But a hope I have for the future, with all of the research and discoveries there have been recently, that a cure will be found to help with disabling the condition and restoring women’s bodies back to fell health.