What was the beginning of your endometriosis journey like before you knew what was happening?
I had a fairly normal cycle before finding out. A few months before I was diagnosed, I was having debilitating pain in the first few days of my cycle. The pain was so bad I couldn’t move, couldn’t breathe, couldn’t even cry because it hurt. Couldn’t lose weight, was constantly red and bleeding constantly from the inflammation. I thought the issues I had were normal, but since finding out, much of that has changed.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed in August of 2025. After having debilitating pain since June of 2025, I went to my OB and told them what was happening, they said it was likely cysts rupturing, but if it happened again we would schedule an ultrasound. It happened again 3 days after that conversation. I went in for an ultrasound the following week and had an 8.4 cm endometrioma on my left ovary that would need surgery to be removed. I had surgery a month later, at which point my endometrioma had grown to 12 cm. I was diagnosed with stage 3 endometriosis. I had my left ovary partially removed due to how deeply embedded the endometrioma was.
What did it feel like to finally have a name for what you were experiencing?
The entire process was scary. I never in a million years thought what was going on could be endometriosis. I thought if I had anything, it would be PCOS. I was scared, my world felt shattered, my future felt unsure. It took me a while to process my diagnosis. I didn’t have “typical” symptoms before June of 2025, so it was a shock to say the least.
How does endometriosis show up in your body and daily life?
Since finding out, I have made a lot of lifestyle changes. Much of what I was experiencing has gone away, but it highlighted the abnormal issues I was dealing with before my diagnosis. I had nosebleeds every day, from what I assume was excess inflammation. I did not use the bathroom frequently, and when I did it was unbearably painful. I would have to mentally and physically prepare to use the bathroom, and would usually be in tears through the process. My entire body was inflamed and in pain. All of that didn’t seem like that big of a deal until it went away
How would you describe the pain or physical challenges of endometriosis?
Debilitating. That is the only word that even remotely could encompass the feeling and pain I had before my diagnosis. I felt like I was being dramatic, like there was no way the pain I was feeling could actually be as bad as it really was.
Do you have “good days,” and if so, what do they look like?
As of now, most of my days are good days. I don’t have much pain, my inflammation is down significantly, my cycles are regular and I have more energy
How has endometriosis affected your education, work, routines, or ability to make plans?
Since learning of my endo, I have adopted and anti inflammatory diet, and I can definitely tell when I have eaten something that caused a flare up. That makes it incredibly difficult to eat out, enjoy treats, etc. unfortunately, we are currently trying to conceive, and that has been difficult due to my endo. The pain of that is heart breaking and earth shattering.
Has endometriosis had an impact on your finances or access to care?
I quite literally owe so much money to various facilities for surgery, ultrasounds, medications, fertility services, etc. I am currently undergoing fertility treatments and have no idea how we’re going to pay for it.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
I’ve had some good experiences and some bad, like most. My OB is very experienced. However, he doesn’t talk me through things like I would like for him to. Nurses at my OBs office has been a different experience, I had a miscarriage 5 months post op and had a nurse tell me I needed to calm down because I wasn’t helping my situation. I had another nurse tell me that not everyone is meant to be a mother and maybe that was gods plan.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Lifestyle changes and surgery made the biggest impact. I chose not to take medication, and while the changes I have made have helped, we are navigating infertility, which seems like a never ending battle
What has it been like to live with a condition that often isn’t visible to others?
I feel like everyone around me thinks I am being dramatic. Like they can’t see the chronic illness I have and it doesn’t manifest itself in typical ways. But nobody sees the tears, the heartbreak, the financial strain, the pain, the unknown. It has been the most lonely thing I have ever dealt with.
Have there been times when you felt dismissed or not believed about what you were going through?
Constantly. The only person I feel truly understands is my husband, and that’s because he’s been there. He’s watched me go through this.
What has the emotional or mental side of living with endometriosis been like for you?
My mental health has never been worse. Anxiety, panic attacks, depression, etc. it feels like you’re fighting a battle that only you are aware of. Like you’re the only one working to change something that others can’t see or dismiss. The fear of the unknown. The fear of uncertainty and infertility. It has taken a toll on me mentally and physically
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
It has made me feel like something is wrong with me, like I am the reason that I had a miscarriage, and that I am the reason I can’t get pregnant again. I feel like a burden to my husband, because had he married someone else, he might not be fighting a battle he didn’t sign up for. It makes me feel like a failure and that I am something that needs to be fixed.
How has endometriosis affected your family relationships, friendships, or dating life?
I feel like it has brought my husband and I closer. I feel like it has caused strain between everyone else, because nobody understands. Especially from the fertility aspect. It’s been hard to be around friends that are pregnant or have children. It’s hard to be around my family because they don’t understand. I am not okay and I feel like I have to wear a mask around everyone, and that makes me not want to do anything even remotely social, because I don’t want to have to put on a brave face to make everyone else more comfortable with my discomfort
Has endometriosis had an impact on intimacy or your sexual life?
I have a very low sex drive. I have for years, I’m only 26, so I know this is frustrating for my husband, although he never makes me feel bad about it. It feels very clinical when we do have sex because I’m doing it for a purpose. I’m doing it on a schedule.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
When I was first diagnosed, the thing that came into my mind wasn’t about the endo itself, it was about how this would affect me being able to start or have a family. Everything I have done for my endo thus far has been for me to be able to have a child. If I could have just one, I would be happy. I don’t need a huge family, I just want one child that I can raise, that I can show unconditional love to, that I can teach to be a good person and to chase their dreams no matter how big. If I could do that just once, I would be happy. Unfortunately, my endo has manifested into infertility. I am seeing a fertility specialist and getting tests done every other week. I see my doctor more than I see my family. Infertility because of endometriosis has been the most heart breaking, gut wrenching thing I have ever had to deal with and I would never ever wish that on anyone.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
I try to keep myself busy. I try to fill my cup in other ways. I see a therapist twice a month. I eat nourishing foods and move my body. I read to get out of my head. I would truly try anything to not feel like this everyday
Do you feel supported in your journey? Who or what has helped you most?
My husband has been my biggest supporter. That man has held me up when I didn’t have anything left, he’s carried me through the worst year of my life, he’s had hope for both of us. He’s loved me every step of the way through this journey and has never given up on me. My dad is also very supportive. He’s always there when I need him, he’s encouraging and listens when I need someone. He tries his best to accommodate me and is always the one I call when I need him. Unfortunately, I don’t feel much support outside of that, I know my friends try, but they don’t see what I go through on a day to day, so they say things they think are helpful, but really aren’t
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I haven’t, I don’t know many people, especially my age that have endometriosis. I’ve met a few older women who have had endo, but I haven’t necessarily connected with them about it.
How has your relationship with endometriosis changed over time?
I’ve only known I’ve had endo for about 10 months. At first, I was devastated, then I thought of it has a challenge to be overcome. Now, although I still do what I can to help it, it feels like it’s defeating me and that there’s nothing I can do about it
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
The medical community and how they treat and understand endometriosis is a joke. Not many understand it, there’s little research on it, no funding for it, and medical professionals act like they know what they’re doing, but it’s really the blind leading the blind. They want to throw hormonal birth control at it, or GLPs or recommend IVF rather than actually do anything about it. They want to slap a bandaid on it until it comes back. It is actually laughable how little doctors understand or try to understand endometriosis
How do you feel endometriosis is represented in society or the media? What would you like to see change?
Endometriosis is seen in society as a “bad period” but it is so much more than that. It’s an all over, systemic inflammatory disease that is chronic. There’s no treatment for it, there’s no research on it. This diseases ravages lives and takes away joy, happiness, pleasure, confidence, etc. thinking of endometriosis as simply being a “bad period” is ignorance and lack of understanding. I want endometriosis to be see as what it actually is – a chronic inflammatory disease that has shown to have affects on all of the systems, not just reproductive.
What would you like more people to understand about endometriosis?
That even though you can’t see the effects of endometriosis, that doesn’t mean they aren’t there. That being supportive isn’t “well one piece of that won’t kill you” or “I’ll carry your baby for you if you can’t”. I want people to actually understand the consequences of this disease and take the time to learn how to be supportive of someone with it.
When you think about the future, what fears, concerns, or hopes do you have?
I’m terrified I won’t be able to have a child of my own. I’m terrified that I won’t be able to be a mother. I’m terrified that I won’t get to see my husband be a father. I’m terrified that I won’t get to watch a child that was created from love grow into a good, caring, loving person and that everything that I’m doing will have all been for nothing.
Is there anything else you’d like to share?
Endometriosis has taken so much from me. It has broken me in ways I never thought possible. It has shattered my outlook on life. I hope to one day be the happy, whole person that i used to be, but for right now, im fighting a silent battle