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

When I was 21 years old I began with irregular periods and missed periods or multiple periods per month with no reason why. Originally diagnosed by my doctor with PCOS. 2009-2010.

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

2024. Getting diagnosed with endometriosis was like being cycled through a bunch of different doctors and specialists for different reasons and all of them not talking to one another and sharing their thoughts and feelings and connecting the dots to my diagnosis so it took me 10+ years of pain and mismanagement and Anger and frustration at not being heard and brushed off as just bad periods or just hormonal changes or just PCOS symptoms which was a misdiagnosis at 21. I had so much blood work and so many ultrasounds which never showed my true issues and I did t know how to advocate for myself better.

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

Relief. Also frustrating that it took so long

To put a name to my condition. And heartbreaking because we know there is really no cure or even great treatments for Endo.

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

Yes. Every single day I am effected by Endo. Some days are easier than others. But every day I feel the exhaustion, the bloating, the cramping and twisting pain. The anxiety of not knowing if I’m going to bleed through my clothing at work and feel like a fool.

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

The pain is exhausting. It takes all of my energy to manage my pain most time. I have joint pain in my hips and knees most days now. I have pain with bowel movements and pain with sexual activity internal and external. The pain is also emotional because I just do not feel like a whole person most times I am just trying to get through the day to hopefully have a better one the next day when the pain is frequent. I also have migraines often now.

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

I have good days. My good days are days when I feel emotionally well. I feel light and like I have some of my normal level of energy back. A day with no headache or migraine. A day where my clothes fit well with minimal bloating. A day I feel like me again.

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

Endometriosis has caused me to miss more work over the past few years due to illness than ever in my life. I feel like a terrible employee at times because I am more easily becoming sick catching common colds more frequently and experiencing migraines more regularly. Causing working as a nurse nearly impossible during those times.

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

Endometriosis treatments can be costly. I am anemic from the heavy bleeding caused by Endo and therefore am on iron daily which is not covered by medical plans and is very expensive. Taking time off work for appointments and due to illness is causing financial burden on finances. Traveling farther away to access care quicker than in the city I live in which is difficult to get care for Endo in is costly to do but they only way for timely appointments and treatments.

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

Doctors don’t seem to know a lot about Endo and adenomyosis both of which I have been diagnosed with. They are very hesitant to offer any advice or treatment options for either. Gynecology care is very limited where I live and no Endo specialists are available here so the gynecology team I can access has very little knowledge and what they have seems to be the basic standard of take birth control ,IUD or hysterectomy to cure. All of which are not the gold standard treatments unfortunately.

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

I have changed my diet and exercise routine to one supporting endometriosis as reccomend by specialists. I currently am on year 2 of an IUD to attempt to stop my periods and slow or stop bleeding to assist in treating anemia and other ongoing symptoms without any luck at all. And the next step my gynecologist recommends at my 36 years of age is a total hysterectomy which I am not yet ready to do.

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

It is really frustrating to explain over and over the exhaustion because it can’t be seen. The pain is hard to describe because people see this condition as a period problem not a full body medical condition and can’t understand how the rest of the body can be affected and feel as if we’re making it all up. It’s frustrating and disheartening to feel Invisible and unheard.

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

Absolutely by doctors, by friends and family, by coworkers and management at work.

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

It’s tough. I feel like a bad mother when I don’t have the energy to do it all for them. I feel like a bad wife when I’m in pain or sexual activity is painful and my husband feels bad despite not trying to hurt me. I feel like a terrible coworker, and nurse when I have to miss time for my illness. And a bad friend when I miss out on plans from pain and exhaustion.

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

Yes because I don’t feel like myself anymore. I can’t predict what my body will be doing or how it will be feeling one day to the next and I don’t know how to cope some days.

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

Not too much as those I love are supportive and I’ve been on this journey now a long time. But it can be tough at times to explain what is going on without feeling like a burden.

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

Absolutely. Pain happens regardless of how gentle and careful we are at times. And the more that continues to happen the less we try because I don’t want to be in pain and my loving husband doesn’t want to cause me pain. We try to stay connected in other ways as much as possible But it is tough.

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

Exercise and sunshine.

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

My husband and friends are supportive. They allow me to be me and come as I am daily and love me where I am each day.

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

Yes I have joined a few online groups for Endo and have heard many stories and learned from others journeys ways to help myself in my daily life.

How has your relationship with endometriosis changed over time?

It is a new journey since my diagnosis and I am still learning what it means to have endo

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

I don’t think study or know barely anything about endometriosis. The medical community does not prioritize it or women’s health in general and see it as a gynecological condition when in reality it is a full body medical condition that spreads just as cancer does and effects you as a whole person not just in gynecological ways.

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

I think it is misrepresented as a non important issues that is not a priority and that is shameful to discuss. I think it needs to be more openly studied looked at and talked about for all to understand.

What would you like more people to understand about endometriosis?

The struggle it is to receive proper diagnosis is only the first step in care for Endo. Than to receive proper care is another whole step which is a new battle to begin. It’s frustrating and exhausting and support and love is needed.

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

I fear nothing will change. I fear healthcare is only getting worse unfortunately with so many shortages currently plaguing the profession of the medical system and it becoming even more difficult to receive much needed care. I’m concerned treatments may never be found or may be a long time away from being found and that many more will suffer with terrible care or no care until that time.

I hope more research and more money is donated into the cause and to see it become the big picture in the next little while and for a spotlight to be place onto women’s health to get the ball rolling on appropriate diagnostic imaging for Endo and adenomyosis and than better treatment options to follow.