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

I had started my period around age 10, by the time I was 14 the period cramps were so severe I would lay on the ground in agony. I kept seeing my family doctor who told me it’s just a bad period and it is “in the stars”. She put me on birth control at the age of 15 to try and mask the symptoms.

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

It took me almost 2 decades of the pain getting significant worse, from prolonged use of birth control I developed fibroids in my breasts and extremely critical high levels of cortisol. I went off birth control and had a DNC with IUD insertion. By day 3 post surgery my IUD rejected. I then got to the point of such heavy bleeding and pain that would make me throw up and not be able to get off the floor that my gyno recommended a hysterectomy leaving only my ovaries. I accepted. Still no endometriosis was discovered. A year after my hysterectomy, symptoms had not improved but gotten worse, I went for more imaging which showed a large endometrioma on my left ovary. I was back in surgery to get an Oophorectomy. During that surgery the surgeon found significant endometriosis on my sigmoid colon, Douglas pouch, deep in my pelvis and my insides were frozen with adhesions. I finally at the age of 38 received a stage 4 DIE diagnosis.

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

Relief, it finally proved I wasn’t crazy.

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

Daily pain, inability to do the things I used to, extreme exhaustion, mental distress that I will never know life pain free

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

Pain is as if my entire pelvic region has barbed wire around it, when I move the barbed wire pulls tighter, when I stay still too long the barbed wire pulls, it’s never being able to be fully comfortable and having to constantly adjust. I’ve had to give up every physical thing I used to love because the pain flares during and following got too intense to manage.

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

The good days aren’t what a healthy person would consider a good day. My good days are that my pain scale is under a 5 and I only need to take Advil and Tylenol to manage.

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

I lost so many days of my life due to agonizing pain, I lost so many friends because I couldn’t keep up with the physical demands or friends being angry that I would cancel last minute thinking I just didn’t want to go when really it’s all I wanted to do.

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

No

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

I was gaslit for over 20 years, I was made to believe the pain was in my head or “phantom”, I was made to feel like I was being dramatic and crazy.

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

Constant judgement because people can’t physically see the problem and think I’m faking it.

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

Everyday

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

I had to go on antidepressants and anxiety medication just to function.

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

The more I keep loosing my female anatomy the more I feel lost in who I am.

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

Yes, friends gave up on me because I would cancel plans so often, my partner left me because sex was painful and made me not want intimacy.

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

Extreme.