What was the beginning of your endometriosis journey like before you knew what was happening?
I suffered from severe abdominal pain for years. I was blessed with three children before I was informed that a hysterectomy was the best option for me. Even during pregnancy, I experienced complications and intense pain, requiring bed rest throughout.
On May 19, 2017, I underwent a partial hysterectomy. I had mixed feelings about it; I wanted another baby, but the doctor explained that the uterine lining wouldn’t support a full-term pregnancy. He believed removing the uterus would alleviate all my pain. I trusted his judgment, but it turned out he was wrong. I had multiple surgeries afterward, removing endometriosis from my ovaries and other organs. The surgeon then revealed that I hadn’t removed my ovaries either.
On October 20, 2022, I had my ovaries removed as well. This hormonal imbalance led me to the hospital and psychiatric ward, where I was diagnosed with severe depression, anxiety, and CPTSD.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed with endometriosis in 2017. The doctor told me I needed a hysterectomy because I had abnormal cells growing on my uterus. Removing my uterus was my best option, as I had lost my mother to cancer at a young age. I agreed. When they opened me up, the doctor said I had stage 4 endometriosis. He wasn’t familiar with it, so he would refer me to an endometriosis specialist. The specialist’s office was almost a four-hour drive from my home, so I had to go back and forth several times.
What did it feel like to finally have a name for what you were experiencing?
It felt good to know I had something real, unlike what others claimed. Having support groups where people shared their advice and experiences with managing pain was incredibly helpful.
How does endometriosis show up in your body and daily life?
It permeates every aspect of my life, affecting my ability to maintain employment, my relationships, and even my daily routines and caregiving responsibilities.
How would you describe the pain or physical challenges of endometriosis?
It varies by day. Some days, it feels like someone’s craving your insides, like you’re a jack-o’-lantern. Other days, it makes you bloat like an eight-month-pregnant woman. Sometimes, it’s like someone’s beating you with a baseball bat. Your energy levels are low, you’re always exhausted, and most days, you’re in pain.
Do you have “good days,” and if so, what do they look like?
A good day is rare, and when you do have one, it’s often followed by a bedridden day.
How has endometriosis affected your education, work, routines, or ability to make plans?
Endometriosis has impacted every aspect of my life. It’s led to job loss and missed opportunities to be present for my children due to constant bed rest. My relationships have suffered because I’ve been sick and unable to contribute. It even affects intimacy, sometimes causing pain during intimate moments with my partner.
Has endometriosis had an impact on your finances or access to care?
Yes, I’ve often been absent from work due to my illness, and a few times I’ve even lost my job because I missed too many days. Without financial support, I’ve fallen behind on my payments and bills. This has started to affect my mental health, raising my stress levels and leading to depression. I spend so much time alone in bed, bedridden and missing out on life. The driving expenses to see the specialist, along with the financial burden I put on my family, all contribute to the overall impact on me.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
It was a nightmare before I found a doctor who listened and helped me in every way he could. He knew when surgeries were too complex and would refer me to another doctor who could help.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Based on my experience, I would never undergo a hysterectomy at a young age without first replacing it with hormone replacement therapy. I wouldn’t use Vissan or Lupron. I’d thoroughly research endometriosis before considering another surgery. I’d also likely save money in case of an emergency.
What has it been like to live with a condition that often isn’t visible to others?
It’s been the most difficult thing I’ve ever experienced. People question me, accuse me of making it up, judge me, and sometimes even the doctor won’t help because they don’t believe me. They think I’m just addicted and want more pills, even though I desperately need pain relief. My own partner and family sometimes claim it can’t be that bad or that I’m faking it for attention. It’s truly the most lonely condition. I stop telling others when I’m unwell or in pain because I don’t want to burden them. I lose control of my own body and become so depressed and alone, even when I have people around me. No one sees my surgeries as something they need to be there for because I’ve had so many. I’ve learned to smile through the pain and rely on myself.
Have there been times when you felt dismissed or not believed about what you were going through?
Too many times to count.
What has the emotional or mental side of living with endometriosis been like for you?
It’s absolutely terrible. You feel like you’re grieving for your old life and yourself. You become isolated and depressed. You’re angry that you can’t control your endo flares, and sometimes you feel like you’re dying or just want to. You also have significant financial stress and feel like a burden to everyone.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Endometriosis profoundly impacted my relationship in numerous ways. Firstly, I couldn’t work, which limited my financial contribution and put strain on our relationship. Additionally, during intimate moments, I often had to stop due to the pain, leaving my partner unsatisfied. Sometimes, the pain was so severe that I couldn’t do anything, leaving me bedridden. I would take painkillers, which made me look like a zombie or sleep away my life, or worse, I could become addicted. The medication caused me to gain excessive weight, making me appear as though I had let myself go and become obese. This led to my partner leaving or cheating because they no longer found me attractive and weren’t satisfied anymore, or their needs weren’t being met. Endometriosis took a tremendous toll on my self-esteem, self-stem, and body.
How has endometriosis affected your family relationships, friendships, or dating life?
Endometriosis took a tremendous toll on all my relationships dynamics.
Has endometriosis had an impact on intimacy or your sexual life?
Yes
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
It took the ability or choice to have another child
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Exercise, diet and yoga.
Do you feel supported in your journey? Who or what has helped you most?
Not at all. Feel very alone
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes online. Some were scammers and others we became good friends.
How has your relationship with endometriosis changed over time?
I’ve reached the point where I feel unwell and assume it’s probably another endometriosis-related issue. I don’t care as much anymore.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
Needs more doctors and specialists in this department
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I would like there to be more knowledge on it and more information
What would you like more people to understand about endometriosis?
There’s more to it than just heavy periods. It can happen repeatedly, even after a hysterectomy, and can affect all organs.
When you think about the future, what fears, concerns, or hopes do you have?
That my 2 daughters could have this as well.
Is there anything else you’d like to share?
Don’t judge us with Endometriosis we fight a battle every day against our own body.