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

I feel like I’ve had endometriosis forever undiagnosed.

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

2009 after years of pain, I went in the hospital in severe pain, menstrual cycle active, they took an CatScan and they said my pain was because I have a ovarian cyst that may have ruptured. I went to the hospital 5-6 times a year in pain, ultrasound probe, CatScan and the Ovarian cyst ruptured had been the story till I found a OB-GYN that really wanted to take a better look at what’s going on because it sounded familiar. After testing, a few different imaging and bld work and my menstrual being the common factor, she soon was able to Dx me with Stage 4 Endometriosis w/ Adenomyosis.

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

I was happy to have a dx but what did it mean? After joining different social platforms dealing with endometriosis, groups and research I became more educated on the disease.

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

It is in my groin area, I have bowel endometriosis as well.

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

Severely painful, debilitating, life altering, everyday is pain for me. My pain after surgery has moved from my lower abdomen to my groin area. I pray that I don’t get constipated because the amount of pain I have get with that is unbearable. I can’t walk, talk, bend, sneeze, work, barely can care for my 2 boys.

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

No day is really good.

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

I run my life day by day, I don’t really make plans because I never know how I’ll feel.

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

Absolutely, copays are ridiculous. Medicine cost add up. Finding the right Dr. to understand and help is difficult as well.

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

Very difficult, I’ve been to a lot of doctors they say they can help. I’ve tried almost every medicine or treatment offered. So Drs really just don’t know… well how are you a Endometriosis specialist?

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

Everyday is ibuprofen every 6 hours, vaginal suppositories to help with pain, stool softeners and Aygestin. Present day I have had a Laparotomy 2010, hysterectomy 2018, and currently I have Bowel endometriosis. My stomach and bowel is sticking together and causes the worse pain. I try to eat better and limit sugars but it’s hard.

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

This part make me emotional, I feel the only people who know and understand are the people that deal with it and maybe their supporters.

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

Absolutely, very hurtful.

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

I’m in therapy, I talk about it often. Because a lot of things I wanna do I can’t. It’s hard to work, I almost need a second job to make ends meet and I can’t do it.

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

I can’t work out because it’s painful. I can barely walk around on a hard surface for a long time.

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

Definitely affected my marriage and other relationships.

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

I’ve dated women before and would have considered myself bisexual. I have changed my sexual orientation to lesbian now because I can’t be sexually active with men/woman that involves penetration and that’s hard on my relationships.

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

Fertility was different, I was able to conceive both of my children without help. I’ve had five pregnancies and two living children.

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

My kids, they keep me motivated.

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

I’ve found a new GYN she’s of my same race, I feel she was able to help me more and give me other recommendations that could help me.

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

I follow different groups but nothing one on one, and I would love to be apart to spreading awareness about Endometriosis.

How has your relationship with endometriosis changed over time?

Yes very rocky, up and down, can say I don’t have good days I have days that are better than others.

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

They don’t understand, we are not heard, we are not seen, there is not enough research on endometriosis in women. They do not know our pain!!

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

I would love more representation more people spreading awareness, especially doctors putting out awareness. I want to see it talked about on these major streamed television channels. I want to see it talked about on the news. I want to see more discussions on social media.

What would you like more people to understand about endometriosis?

That it is not a game, we are not putting on a show. See us, hear us, help us by gaining knowledge and spreading how it affects us.

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

I have a big surgery coming up, I’m getting a Oophorectomy and a colorectal doctor has to come in and clean up around my colon first. However, everything is messy and sticking together. There are risk of course and that frightens me.

Is there anything else you’d like to share?

I’m here if anyone wants to ask questions or hear more of my journey then and now!!