What was the beginning of your endometriosis journey like before you knew what was happening?
My pain always seemed to be worse than my peers, beginning at age 15. I saw countless doctors, who put me on various forms of birth control for years.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed 10 years after my symptoms began, at age 25. My mom had suspected endo for years, but no doctor would explore this further than prescribing birth control. Finally, we found a doctor who specialized in laparoscopic surgery and made an appointment. My mom advocated for me and told him “if you don’t do the surgery, we will find a doctor who will.” Two weeks later, I came out of surgery and finally had a diagnosis. He removed as much as he could, but 6 months later I returned to have more removed as it was so severe by the time I was diagnosed.
What did it feel like to finally have a name for what you were experiencing?
Relief that I wasn’t “crazy” and it wasn’t “all in my head!” For so long I believed I just had a low pain tolerance. I found out it was quite the opposite.
How does endometriosis show up in your body and daily life?
Endometriosis has severely impacted my day-to-day life. I have to power through pain, no matter how bad it is. Unfortunately for us women, we can’t just call in sick every time we are experience a flare up. We have to show up, and put on a brave face. There are days I am in agony, but still have to show up, as a mom, wife and full-time employee. I recently began speaking about ways that we can learn to thrive through pain in a Keynote I wrote called “Strength of a Smile: Thriving at Work Through Invisible Pain”. I have learned through my battle with endo, that everyone is silently struggling with something. I speak about how giving people grace, practicing empathy, and offering more kindness can be a life changing tool to help push through on the hardest days; while recognizing we all carry something heavy. I like to think that this is one good thing that having endometriosis has taught me. 🙂
How would you describe the pain or physical challenges of endometriosis?
Some days I compare the pain to labor pains. I have had two children, so I know what that feels like. Some days I describe it like this: Imagine a person grabbing your insides and twisting them together like a wet towel, but the towel is on fire. The bloating is horrible as well, many days my clothes don’t fit which is very disheartening. I live an active lifestyle, and workout at least 5 days a week. Some days, I can hardly manage a long walk at the gym because the exhaustion is so bad. And yet-we power through!
Do you have “good days,” and if so, what do they look like?
Typically I have between 3-6 good days a month. A good day usually occurs the week after my period. It’s almost like my body resets. I have energy, less bloating, and the pain can be a one or two out of ten. The pain is always there, but good days are so cherished when you live with chronic pain!
How has endometriosis affected your education, work, routines, or ability to make plans?
Last year, I was also diagnosed with adenomyosis, which I had never even heard of before. I knew something else was going on because my pain felt different, and even more severe. Since then, I have had to call out of work due to debilitating pain, and even landed in the hospital because of it. I keep a heating pad at work, which honestly does not help much, but is comforting. I work in traveling hospitality sales and am expected to be “on” all of the time at work. Some days this feels impossible, but unfortunately, to stay employed, its IB Profin every few hours for me,
Has endometriosis had an impact on your finances or access to care?
Absolutely, in terms of medical bills. My insurance went up significantly this year, so we had to switch to a high deductible plan. Of course, now from being in the hospital and having to see various specialists, I have hefty medical bills. I am planning on a hysterectomy, but have to wait until next year when open enrollment happens again. I will then be able to review insurance plans, and see if there is one that will allow for me to receive the care I need, affordably.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
FRUSTRATING. HOPELESS. INFURIATING. I can not even begin to count the number of specialists I have seen in my years of dealing with endo. Countless sonograms, an MRI, blood work, pills etc. I was referred to a specialist back in April for my hysterectomy, and was able to make an appointment for OCTOBER, to discuss a possible hysterectomy next year. This is just one example of the frustrations I have run in to.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Surgery has been the most helpful treatment so far, but offers temporary relief. I have tried many medications, supplements, had an IUD twice that did not work for me. I recently asked my doctor about emerging research showing that GLP1’s can help with inflammation, but they will not prescribe it to me. Said there is not enough research on it. Just like with endo-no research. So, instead, they gave me muscle relaxers and said hysterectomy will be my next step (I am 40).
What has it been like to live with a condition that often isn’t visible to others?
Very disheartening. I really try not to complain about it a lot. When I do talk about it, it feels like people think you are exaggerating, or just don’ t understand. Which I can’t blame them for. So, I struggle in silence.
Have there been times when you felt dismissed or not believed about what you were going through?
99% of the time. As I mentioned, it took 10 years for me to receive a diagnoses. Now, 15 years later, I am still often dismissed. For example, I was in the hospital recently with severe pelvic pain, and was not even given Tylenol while there. Fairly normal for us living with endo, unfortunately.
What has the emotional or mental side of living with endometriosis been like for you?
Hard. I feel bad for my husband because he has to see the real me, hurting. He also gets all of my complaints. My kids are starting to notice when I am having bad days too, which make me sad. Last night my 6 year old daughter brought me my heat pad. It broke my heart.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
There are many days where I hate my body, because of the pain, bloating and inflammation. I feel like it has turned against me, and I want to crawl out of my own skin. On the other hand, there are days when I am proud of my body, for all that it can do despite pain. Some days I feel like a bad ass. 🙂
How has endometriosis affected your family relationships, friendships, or dating life?
I really try not to let the disease interfere with my relationships. I rarely cancel plans due to pain. I have trained myself to power through. It has had an affect on my marriage though. I am sure my husband is sick of hearing me complain about pain.
Has endometriosis had an impact on intimacy or your sexual life?
Absolutely. Sex can be painful more often than not. Also, I rarely want to because of the pain, or because I feel gross and bloated. When I have good days, we have to schedule intimacy because it is the only time we are able to.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
When my husband and I were dating and getting serious, I had to have a conversation with him about fertility. After my diagnosis, I asked the doctor about how likely I was to become pregnant in the future. He told me, I would not know until I tried. I told my husband when we were dating I may have issues getting pregnant, and he stuck by me. I was one of the VERY lucky ones who had no trouble conceiving, or carrying. I am forever grateful for that, because I have two incredible kids now.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Focusing on the good, finding small moments that bring me joy, and remembering that everyone is carrying something. This helps me feel less alone, and many times the disease can be incredibly isolating. Also, I really to to focus on the parts of my body that are healthy. Health is wealth!
Do you feel supported in your journey? Who or what has helped you most?
I am so lucky to have the best group of friends, family, and a wonderful husband. I have felt support from them, always. The village we have created has helped me the most. en, and hearing their journey. Again, it feel less isolating.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes! I follow a lot of endo support groups, and love connecting with those woman. Since I began speaking at conferences about my journey-so many women have told me about their struggles with endo. I am so thankful to be able to connect with other women who can understand what this disease is like, and what it is like living with it.
How has your relationship with endometriosis changed over time?
I feel that I have learned a lot more about it through the years. Also, I have encouraged others who are experiencing pain with no answers to advocate for themselves. Since then, three women I have connected with fought for the surgery, and were diagnosed. It feels like I am helping to make a difference for them, even if my contribution is minimal.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It infuriates me. When I was doing research on the disease for my keynote, and learned that in 2025 0.038% of Nat’l Institute on Health Funding went toward this disease. That is disgusting. I learned that there are studies on the attractiveness level of women with endo, and hardly any research on what causes it and treatments. It makes me want to scream.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I do feel like it is finally being talked about more, which makes me so happy. There are celebrities and people of influence sharing their stories, which has opened peoples eyes to how debilitating the disease is. Also, I am so used to living with it, I forget how many people have never even heard of it! it feels good to be able to educate people a bit by speaking about it as well.
What would you like more people to understand about endometriosis?
That it is a whole body disease, not just a gynecologic one. That it is listed as one of the top 20 most painful conditions people can have, along with kidney stones, child birth and heart attacks.
When you think about the future, what fears, concerns, or hopes do you have?
My hope is that with more research, they find out what causes the disease. I hope they find a treatment option at the very least, and a cure would be even better. I hope that people begin seeing this as the life altering disease that it is, and that as a society, we take better care of women dealing with it. For example, considering it a disability, and providing time off for women when they need it. I hope that more doctors start listening and taking our pain seriously. It should not take 7-10 years to receive a diagnosis. My fear is that my daughter will have the disease. I never want to see her experience the pain from endometriosis that I have had to endure.
Is there anything else you’d like to share?
Thank you for providing a platform for women to share their story, and spread awareness about endometriosis!