What was the beginning of your endometriosis journey like before you knew what was happening?

Frustrating. At first I thought it was just me exaggerating, like going to the ER every couple of months was normal. I tried to explain it away and then when I couldn’t anymore I felt like doctors took over that job. I was literally told a few months before my diagnosis that I couldn’t possibly have Endo, after I asked if maybe that was the answer.

When were you diagnosed, and what was your journey to getting diagnosed like?

A laprascopy that turned out to be less than helpful beyond confirming that I had endometriosis. I also was jumping from doctor to doctor because no one seemed to want to take this on. Eventually I found a specialist…three hours away from home. I pursued the option though and it was the best choice I’ve made for my care so far.

What did it feel like to finally have a name for what you were experiencing?

It gave me a starting point and gave what I was feeling meaning, like I could do little things that might help based on my diagnosis. I didn’t feel crazy or lazy anymore. It felt safe to listen to my body and give it what it needs to feel better. It gave me a starting point to talking to people about what I was experiencing.

How does endometriosis show up in your body and daily life?

Being tired. It was immense pain before my surgery that took me out of my daily life way too often. I’m waiting to learn what my new baseline is but right now its ‘tired’. I’m only a few weeks post opp. I’m worried that I’ll be too different and that the pain will come back and the fatigue will stick around. I’m worried about my future in general when it comes to my endo.

How would you describe the pain or physical challenges of endometriosis?

I’ve experienced the worse pain in my life with Endo. Nothing has compared so far. It messes up how I answer the pain scale because in comparison everything else feels like mild discomfort.

Do you have “good days,” and if so, what do they look like?

Good days are when I’m just tired and the pain is just a buzzing in the background.

How has endometriosis affected your education, work, routines, or ability to make plans?

I have to have backup people in case I need to miss work things. It has made me seem irresponsible when the brain fog sets in. There is no routine only what feels like triage. I try to make plans and I try not to be disapointed when my body decides they aren’t happening. It affects my closeness with people I care about.

Has endometriosis had an impact on your finances or access to care?

Yes. I have to get out of state treatment which is expensive and not always covered. There was no specialist in my area at all that was either available or competent.

What has your experience been like with doctors, specialists, and navigating the healthcare system?

I have had a doctor almost kill me, a doctor who swore up and down I couldn’t have endo after not even examining me, performed a procedure without telling me about post op care or giving me antibiotics after. I ended up in the ER a week later with an infection and severe pain, I had to stay for 7 days on heavy antibiotics.

Now I have a doctor who has a many step plan for my care, is a specialist in his feild and bends over backwards to ensure I get the best care and that we are on the same page about it at all times. He takes proper precautions and helped to treat my complicated stage four endometriosis.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I am currently changing my lifestyle and diet. I’m learning that theres so much that feeds endo that I can avoid. I know nothing will cure it, and it angers me when I’m advertised things that I know won’t help, but they prey on people like me who just want relief. I still don’t know if my surgery helped, it’s still too close to my surgery date to know. I’m only a few weeks post op.

What has it been like to live with a condition that often isn’t visible to others?

I find myself having to be more open about my condition than I’d like, so that way people begin to understand why I am the way that I am and why I plan things the way that I do.

Have there been times when you felt dismissed or not believed about what you were going through?

So many times. Both with medical professionals and sometimes with friends and my partner. Some of it is on purpose and some of it was just really not understanding and me needing to press harder for them to listen.

What has the emotional or mental side of living with endometriosis been like for you?

It’s definitely taken it’s toll on my mental health. I feel lost sometimes and like maybe I’m just looking for attention and maybe it’s all in my head and I need to stop talking about it. But I don’t want to, I want it to be more known so something can be done about it.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I don’t like what I look like. I have body dysmorphia already so the days when I’m bloated I feel disgusting. I’m trying to love my body and take care of it but I also feel like its constantly betraying me so it makes is hard to want to care for it.

How has endometriosis affected your family relationships, friendships, or dating life?

Its created some fights, but it’s also brought me closer in a way to the people that matter most. It’s shown me who truely cares about me and who can’t be bothered. It’s shown me who I can rely on to be there for me and who I can’t. It’s also brought out the caregiver in some people. When I need someone to help me out they do.

Has endometriosis had an impact on intimacy or your sexual life?

It’s messed with it quite royally. My horomones are always all over the place.

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

I decided a long time ago I didn’t want kids, so it hasn’t influenced me much except doubling down on that decision.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

A great foundation of people who care. Online Groups Sometimes.

Do you feel supported in your journey? Who or what has helped you most?

My partner, My parents, and a handful of friends have really helped keep me sane and confident that I can get through this.

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I’ve kind of interacted from afar. I had one bad expeirience on a post I’d made and It kind of scared me away. I know were all desperate for answers and help but in that moment I was reaching out with a question that had nothing to do with what I was attacked for.

How has your relationship with endometriosis changed over time?

I’m less angry about it right now. I might get angry again in the future. But it’s not a person, it doesn’t care if I’m angry. It’s just easier sometimes to be angry.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

They don’t get it for the most part. It’s not educated about, it’s not cared about, and most OBGYNs have no clue what to do with someone with ENDO, but some pretend that they do despite not having up to date information or any information at all.

How do you feel endometriosis is represented in society or the media? What would you like to see change?

I have rarely seen it represented. I’d like to see it represented more. I have written a play that features it, and I may add a thread about it to another, just to give a bit of exposure to the topic.

What would you like more people to understand about endometriosis?

It’s a whole body disease. It effects everything, not just during your period either. It can affect your whole body any day of the week.

When you think about the future, what fears, concerns, or hopes do you have?

I’m worried that my surgery changed nothing. It’s too early to tell.

Is there anything else you’d like to share?

No