What was the beginning of your endometriosis journey like before you knew what was happening?
It was scary. My symptoms have always indicated an issue with my digestive system so having tons of tests with no definitive results was hard to deal with.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was (finally) diagnosed in 2020 at age 32. I had been getting sick since I was around 18 with heavy and painful periods, constipation and/or diarrhea, fatigue, nausea etc.
What did it feel like to finally have a name for what you were experiencing?
Relief. For years I had been made to feel like I was crazy and dramatic and weak. I knew what was wrong years before my diagnosis because my mother had endometriosis and our experiences were similar. Having a doctor finally validate that was life changing.
How does endometriosis show up in your body and daily life?
Before excision surgery in 2020, it was debilitating. I was sick all day, every day. I had surgery and have been on 2 forms of birth control since so while it is so much better, I still have fatigue, varying stomach issues, and stress.
How would you describe the pain or physical challenges of endometriosis?
At its worst, the pain is unimaginable. I was bed bound and completely dependent on others for a few days each month. The depression that caused and the thought that things would never get better had me thinking of ending my life.
Do you have “good days,” and if so, what do they look like?
Yes. After surgery, I had continuous good days for a few years. Things have started happening again over the past 6 months or so, so I never really feel 100%. However, experiencing the worst of it makes me grateful for any day I can function as a human being.
How has endometriosis affected your education, work, routines, or ability to make plans?
Yes. I almost lost my job before surgery because I had to call out sick so frequently. Even now, I can’t be too far from home in case I have a flare up and always have to make sure there is a bathroom nearby just in case.
Has endometriosis had an impact on your finances or access to care?
I went to see my doctor a few months ago because I was experiencing symptoms with increasing severity. They also had me do an internal ultrasound to check for chocolate cysts since I used to get them regularly. With insurance, it cost me $1200 out of pocket. I’m still paying it off. I avoid going to the doctor unless it’s an emergency because I just can’t afford it.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
Frustrating. I was dismissed for so long by so many doctor’s. I finally found the doctor who listened and believed me and performed my surgery, only to find out she moved out of the country shortly after. I still haven’t found someone I trust and so many doctor’s know very little about the condition. One obgyn advised me to eat okra soup as a solution. I wish I was joking.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Again, frustrating. My most recent doctor was pushing an IUD on me even though I said I did research and did not feel that was the best route. She gave me a hard time refilling my currents meds (that actually work for me) and left me in tears panicking about how bad it would get without them. It often feels like I have no autonomy and can’t make my own decisions. The next step for me would be a hysterectomy but they are refusing to take the ovaries because they look healthy. Right now, I am just waiting for things to get bad enough for them to do a total hysterectomy.
What has it been like to live with a condition that often isn’t visible to others?
It’s so hard. I don’t want to be a burden and I don’t want endometriosis to be my whole personality. No one can truly understand unless they experience it and so I often feel that others judge and think that I am just being a baby.
Have there been times when you felt dismissed or not believed about what you were going through?
Absolutely! Most of my life has been like that. Doctors can be so condescending and patronizing too. It hurts and makes you feel so defeated.
What has the emotional or mental side of living with endometriosis been like for you?
Highs and lows. At the lowest, I was suicidal. I had no hope and was to the point that so just couldn’t deal with that level of pain every day. After surgery, I felt pure bliss. I was proud of myself for fighting and learned I am so much stronger than I knew. Not being in pain every minute lifted the cloud over my head.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
As I said in the previous response, it has taught me how strong I am. If I can survive that pain, I can survive anything. My body has changed so much because there were periods I could hardly eat and was rail thin, and then birth control cause weight gain so that can be hard.
How has endometriosis affected your family relationships, friendships, or dating life?
Fortunately my boyfriend is understanding and supportive. I think it gets tiring for him sometimes too but he never makes me feel bad about it. My mom had it too so she understands and my family is also very supportive. I’m so lucky to have them.
Has endometriosis had an impact on intimacy or your sexual life?
Big time! The birth control has definitely lowered by libido so I’m pretty much never “in the mood.” On top of that, intercourse has become extremely painful. Orgasms can also be very painful for me. This is one area my boyfriend is not so understanding, but we have come a long way together.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I don’t want children so the infertility was actually the only benefit for me.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Marijuana!!!!!! I wish I could scream it from the rooftops. It was the ONLY pain relief that worked. I also enjoyed warm baths but I think that helped more because it relaxed my body and mind and took some of the focus away from the pain.
Do you feel supported in your journey? Who or what has helped you most?
Yes. My family and boyfriend. My coworkers and my boss are very understanding as well but it wasn’t always like that.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes. Honestly, that can be frustrating. There is a lot of misinformation and bad advice spread online. Every day me is different and what works for one may not for another, but some suggestions are dangerous. I have learned a lot too.
How has your relationship with endometriosis changed over time?
Not really. Hated it then, hate it now.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
SOOO far behind. I’m glad that there has been more recognition and seemingly more research recently but we have a long ways to go and women are still being dismissed and waiting years and years for a diagnosis because so many doctor’s aren’t knowledgeable or are misinformed.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
More awareness is needed, more research is needed.
What would you like more people to understand about endometriosis?
That is a full body condition, it’s extremely painful and debilitating, and it can be so different for each person
When you think about the future, what fears, concerns, or hopes do you have?
I am scared every day of going back to how I felt before surgery. That was the darkest point in my life and I worry I won’t survive it again. I hope when the time comes, they do a full hysterectomy with excision so that I don’t have to deal with it ever again. My mom had this experience and has had zero issues since then, and that was over 25 years ago
Is there anything else you’d like to share?
Advocate for yourself! I always felt that doctor’s know better than I do, so I would let them dismiss me and then feel like I was such a baby with low pain tolerance. You know your body and you know when something isn’t right so keep pushing and don’t give up until you get answers.