What was the beginning of your endometriosis journey like before you knew what was happening?
Looking back now. There were markers of endometriosis from the time I was as young as 8 years old. I had severe GI issues that were unexplained leading to multiple treatments, X-rays, enemas and medications. By the time I was menstruating, I was in bed or fighting for my life to stay engaged in class or on the sports field due to the symptoms and pain around ovulation and my cycle. I vividly remember being a freshman in high school and passing out in the bathroom from pain and nausea during menstruation which simultaneously coincided with a lock down. I had run to the office and laid on the floor in the clinic begging them to call my parents to be picked up but had to lay on that floor focusing on my breathing for quite some time before I was allowed to leave the building. Strangely enough the lock down really hasn’t crossed my mind at all and I only remember that detail because of the fact I wasn’t allowed to leave. I believe shortly after that I was put on birth control to try to help with the severity of my cramps and regulate the heaviness of my bleeding.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed following a laparoscopic surgery at age 29 after 3 years of unexplained fertility and years of OB/GYN visits of constantly advocating to be heard about the severity of my symptoms.
What did it feel like to finally have a name for what you were experiencing?
It was a relief to have an answer and finally know that my experience was validated but I also remember coming home from the surgery and feeling so frustrated and defeated that it took so much endurance and energy to get to that point.
How does endometriosis show up in your body and daily life?
I have chronic GI issues that will flare up throughout my cycle and intensify based on my diet. In addition I nearly always have some level of pelvic pain that worsens with exercise, heavy activity or core use, and after sex. This makes sexual intimacy in my marriage difficult- especially when we are still pursuing the hope of procreation. I get brain fog often and my skin will be extremely itchy for no reason (histamine intolerance). I have migraines that worsen during menstruation accompanied by nausea and cramps down my legs and up into my shoulders. Sometimes I will vomit and black out from the pain and in the past my body would go into a form of shock where I would lose fine motor movement and my hands would go catatonic.
How would you describe the pain or physical challenges of endometriosis?
The pain is consistent, fluctuating daily between intense and just irritating. I never know what I’m going to get and each day I have to reassess how much I can handle and what my capacity for mental and physical activity looks like to not overextend myself and feel the consequences of increased symptoms the following day.
Do you have “good days,” and if so, what do they look like?
When I have good days the pain is manageable- like a minor headache from looking at a screen too long. I can usually get all of my tasks done from the day, eat 3 meals with minimal GI issues and can concentrate on work and home life with relative ease. On average, I get 1-2 good days a week.
How has endometriosis affected your education, work, routines, or ability to make plans?
I procrastinate on making decisions and plan around symptoms. This includes thinking about what I’ll eat, having water and meds with me, factoring in time to sit and rest, and oftentimes ensuring there is access to a restroom when I’m having GI issues.
Has endometriosis had an impact on your finances or access to care?
The surgery was costly and our insurance is not great so we did use a large sum of money that we saved for the procedure.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
I found that in the rural area I live there are not many doctors whom seem knowledgeable about endo. To get specialized care I need to go about 2 hrs away which is not practical, so I have not sought as much fertility and endo symptom care as I could.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I have made lifestyle changes in the foods that I eat, using natural products, and taking a lighter approach to working out/exercise. Also understanding that many of my “mental health” symptoms were rooted in endo led me to taper off the multiple meds I was taking and have found mental clarity in doing so.
What has it been like to live with a condition that often isn’t visible to others?
It’s difficult to explain how I’m feeling or why I don’t have the energy/capacity to do things. I often perceive that I’m being judged or doubted about my symptom severity.
Have there been times when you felt dismissed or not believed about what you were going through?
Yes. Ever since I first started asking if it could be endo when I was in high school up to now when people question how bad I really feel.
What has the emotional or mental side of living with endometriosis been like for you?
I feel overwhelmed having to always be thinking about how I will support my well being. The symptoms often look similar to mental health symptoms of anxiety and depression or ADHD, so I was initially treated in that way and took medications to manage the symptoms but they would make other things worse so I always felt like a lost cause.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I do struggle from time to time with my body image- specifically on the days when I have severe bloat belly or don’t have the physical energy that someone my age should have.
How has endometriosis affected your family relationships, friendships, or dating life?
Intimacy can be difficult in my marriage. There are times that I have the desire to be physically intimate but avoid it because I know after and into the next day or two I will have intense cramping and sometimes GI issues to deal with.
Has endometriosis had an impact on intimacy or your sexual life?
Yes, see above.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
We have one child and have imagine having a house full of children but following her birth we have experienced a period of infertility going on 5 years. The time and energy that goes into taking meds at a certain time, going in for mid cycle ultrasounds, taking pregnancy test, and having blood draws is exhausting and begins to feel isolating, filled with grief, and frustrating. In my experience I have blamed myself for not being able to conceive which has fueled quite a lot of self hatred in that aspect.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
The only thing that I find comfort and peace in, is my faith. I am a Christian and have many examples I turn to in scripture and prayer that have given me hope and reassurance. I’ve learned that my worth is in my identity in Christ rather than my ability to reproduce and that if it be God’s Will we will someday conceive again just as many others in the Bible have testimonies of.
Do you feel supported in your journey? Who or what has helped you most?
My husband is amazing and helps me to believe that I am not alone and that we are so blessed to have the child that we do. My extended family understands and tried to be supportive but by asking about our journey often it does bring up that constant doubt, grief, and anger.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Not necessarily. I’m a part of online groups but I mainly use it for reassuring myself that I’m not crazy for having the symptoms that I do.
How has your relationship with endometriosis changed over time?
I’m beginning to see it as a part of my identity for better or for worse. I think in some ways this has helped me to accept the pain and suffering that goes along with the condition but it also puts me in a box that I know my worth extends beyond.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It honestly really frustrates me that there isn’t more funding and research going into endo, especially considering the statistic that 1 of 10 women have it.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I don’t see it represented in society and the media, so I would like to see it be in more of the conversation.
What would you like more people to understand about endometriosis?
Just because you don’t see the symptoms doesn’t mean it’s not here, and just because someone is good at pushing through their pain and symptoms doesn’t mean that they want to continue doing so, or find ease in doing so.
When you think about the future, what fears, concerns, or hopes do you have?
I’m terrified to see how endo will progress throughout my lifespan and what my body will be able to put up with as I age and experience some of the other challenges that come with our bodies slowing down during aging. I also am fearful that I will not get there experience of having a newborn again which brings a lot of grief.