What was the beginning of your endometriosis journey like before you knew what was happening?
Before I knew what was happening, I started noticing my period cramps were becoming more painful than they’d ever been. That shift began around age 19, right when I was starting out on birth control. By 22, I’d had multiple ovarian cysts rupture, some the size of golf balls. On top of that, I dealt with heavy periods, bloating, and constipation. I assumed all of it was just normal, especially since it seemed to ramp up around my period. I tried switching birth controls a couple of times, but the symptoms stayed the same. When I got an IUD, everything got significantly worse, and even after having it removed a year later, it never went back to how it was before.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was clinically diagnosed in March of 2023. In June of 2026, I received an official surgical diagnosis. The journey to get there was a rough one.
The GYN I was seeing didn’t really look into my symptoms much. She first blamed the ovarian cysts I had, then later claimed I never actually had any cysts, despite multiple ultrasounds showing them. Then she told me it was my Nexplanon, and that I should get it removed and get an IUD instead because that would help. She diagnosed me with something called Mittelschmerz, a condition where about 14 days before your period, a follicle swells and bursts on the surface of the ovary to release an egg, causing pain.
The IUD did not help. It made my symptoms worse. I started getting unbearable cramps that spread to my bladder, giving me the feeling I had a UTI when I didn’t. I was told I probably wouldn’t get my period either, and that the Mirena IUD would help with the pain and heavy flow. It did not.
I continued to advocate for myself. Coworkers and friends told me to ask my GYN if endometriosis could be the cause. When I asked about it, and asked if I could be referred to a specialist, I was yelled at by my doctor. She essentially fired me as a patient, saying I was being “dramatic” and “too sensitive,” but sent the referral anyway so she wouldn’t have to deal with my problems.
I was sent to a fertility specialist, an older middle aged man. He seemed nice, did an exam, and said he “felt” the endometriosis. It was then recommended that I get my IUD removed and take the Lupron Depot shot to put me into a medically induced menopause, along with hormone therapy. I agreed, but the medication was $1.2k, and I couldn’t afford it. I was also told the only “cure” for endometriosis was to have as many babies as possible and breastfeed for as long as I could. I was 23.
What did it feel like to finally have a name for what you were experiencing?
It felt like a wave of relief. Now that I have a clinical diagnosis, my new team of doctors are more understanding and educated about the condition. They actually started trying to treat the symptoms, and so far it’s been helping. I was relieved again when my recent surgery confirmed I did have endometriosis. It was no longer “we’re treating you for this until it starts sounding like something else.” Now we know we’re on the right path and can focus more on how to help with my symptoms.
How does endometriosis show up in your body and daily life?
I have chronic back pain and pain in my hips and shoulders. I get random pain in my pelvic area, as well as nausea, especially to certain smells. When I do have my period, the cramps last for hours and make it difficult to work, but despite it, I still show up and try to push through because I need money to pay my bills.
How would you describe the pain or physical challenges of endometriosis?
I have always had a higher tolerance for pain, ever since I was a little kid. At 5 years old I stepped on a rusted 9 inch nail and didn’t even cry. I didn’t feel it at all, but then again, I don’t have much feeling in that foot anymore. Despite my high pain tolerance, the pain I get on my period is the worst pain I have ever felt in my life. It’s about tied with IUD insertion, which was done with no pain relievers or numbing. Endo pain is the first type of pain that has made me cry and made me want to throw up. It makes my legs weak, and I end up walking bent forward and shuffling my feet, like an old woman. It makes it hard to concentrate. Endo also makes being intimate with my boyfriend difficult sometimes because of the pain. My pelvic muscles stay sore for weeks after my period, to the point where reaching up, standing on my tiptoes, or anything that stretches my abdomen hurts. It feels like a muscle is being pulled.
Do you have “good days,” and if so, what do they look like?
For the most part I do. Now that I have started continuous cycling my birth control, I don’t get a period for 6 to 8 months. I occasionally get small cramps and I still deal with the nausea and constipation and bloating but they are more calmed down than when I get my period. The only thing that stays all the time that’s bothersome is the lower back pain.
How has endometriosis affected your education, work, routines, or ability to make plans?
For the most part, I do. Now that I’ve started continuous cycling my birth control, I don’t get a period for 6 to 8 months at a time. I occasionally get small cramps, and I still deal with nausea, constipation, and bloating, but they’re much more manageable than when I get my period. The one thing that stays constant and bothersome is the lower back pain.
Has endometriosis had an impact on your finances or access to care?
It hasn’t had a major impact on my finances currently. However, the Lupron Depot would have if I had gone through with it. At the time it was prescribed, my insurance didn’t cover much of the cost, and I would have been left with a copay of $1.2k.
As for access to care, getting in with my pelvic pain specialist took about a three month wait. I currently have Medicaid, which covers everything, and I also have access to free healthcare through Yale. I haven’t had a hard time getting referrals, except for that one instance with my GYN. I would also count my experience with the male fertility specialist as an access to care issue, since his only real advice was to get pregnant and breastfeed for as long and as often as possible, rather than offering an actual treatment plan.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My experience with doctors before diagnosis was rough, largely due to my previous GYN and the fertility specialist, as I mentioned earlier. Since then, my care team has completely changed for the better. I switched from seeing an OB-GYN to seeing midwives, and they have been amazing. They’re patient, understanding, and always explain their reasoning, whether that’s why they do or don’t think I need a certain scan or procedure. They actually listen. My pelvic pain specialist, for example, was honest with me that she didn’t have a specific reason to believe the endo surgery was medically necessary at the time. It was more that I wanted it done to confirm we were on the right track, which turned out to be the case.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
When I was on Nexplanon, I thought all my endo symptoms were just normal. I was then convinced to switch to an IUD, which made everything significantly worse. I’m currently on an oral contraceptive pill and do continuous cycling, meaning I skip the placebo week and don’t take breaks unless I start spotting for more than a few days. Because of that, my symptoms have improved overall, but they’re still pretty bad during the times I do take a pill break and get a period.
As for treatments, nothing has really worked to help with the pain except Voltaren tablets, which I take the day before I stop my birth control for a week. I also try to avoid too much sugar or gluten, which has helped with the bloating. Staying hydrated has helped as well. I drink a lot of water and electrolyte mixes, partly because I also have POTS.
What has it been like to live with a condition that often isn’t visible to others?
It’s hard. It gets tiring to have to explain it to people over and over. Most people assume I’m making it up or exaggerating, either to be lazy or to get sympathy, which isn’t the case at all. I have met some people who are more understanding, though. My boyfriend, for example, didn’t fully believe the pain could be that bad until he saw me sobbing from cramps. Since then, he’s taken great care of me and even tells other people that it’s not an easy condition to live with. He’s also incredibly understanding when I get upset or down about the fear that endo might make it difficult or impossible for me to have children someday. I don’t think most women have to carry that fear, so it’s something a lot of people won’t understand, especially those who already have kids and had a straightforward pregnancy and birth.
Have there been times when you felt dismissed or not believed about what you were going through?
Yes, there have been several times. My previous GYN dismissed my symptoms repeatedly, at different points blaming my ovarian cysts, then denying I ever had cysts at all, then blaming my Nexplanon. When I finally asked if I could be referred to a specialist for possible endometriosis, she yelled at me, called me “dramatic” and “too sensitive,” and essentially fired me as a patient, though she still sent the referral. The fertility specialist I saw afterward wasn’t much better. His only real advice was to get pregnant and breastfeed for as long and as often as possible, rather than offering an actual treatment plan.
Outside of doctors, I’ve also dealt with this from coworkers. One of my coworkers has told others that I’m lying and being dramatic about my condition. He’s said the same about another coworker of mine who also has endo, and has talked badly about both of us, especially regarding us going out on medical leave since we ended up having our surgeries within a week of each other.
What has the emotional or mental side of living with endometriosis been like for you?
It’s very tiring, and not just because of the pain. There’s a constant, underlying fear of being judged or thought of as making this up for attention. It’s frustrating that so few people, including doctors, are educated about this condition, especially within women’s health specialties. The fact that endometriosis remains understudied and underfunded only makes it worse.
I’ve seen this play out even in online endo support groups, where men will sometimes chime in and downplay the severity of the condition. I saw one post where a man, who wasn’t even diagnosed with endo himself, brought up how men can get it too and how research on that is basically nonexistent, in response to a woman pointing out how most medical research historically centers on white men, leaving women and people of color underrepresented. I can understand where his frustration comes from, but it’s also true that endometriosis in men is extremely rare. When he was called out for talking over women’s experiences, he doubled down, insisting there’s inequality in research funding for men with endo, despite the fact that there’s barely any research on women, who make up the vast majority of people affected.
On top of that, I believe this condition is widely underdiagnosed. I’m sure many more women have it but are simply told their pain is normal, the same way I was told my period cramps were normal, only to find out as an adult that they weren’t.
I also don’t know many people personally who have this condition. Even though my friends are supportive, none of them truly understand what I’m actually dealing with. My coworker comes closest, since she understands the physical side, the pain and everything that comes with it, but even she will never fully understand the mental and emotional toll it takes on me. I’m sure we share some common struggles, but there are things bothering me emotionally and mentally that she simply won’t know about.
There’s also a constant anxiety I carry about my ability to have children someday. Logically, I know it’s probably not going to be an issue, but the fear still consumes me at times. When I was 19, I had this strong gut feeling, almost a premonition, that if I hadn’t had children by the time I was 25, it would become very difficult or impossible for me afterward. Now that I’m 26, almost 27, I feel like my time is running out, and it genuinely scares me.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I’m not entirely sure how to put this into words, but I’ll try. I’ve always struggled with body image issues, and that hasn’t gone away. If anything, it’s gotten harder since my birth control caused significant weight gain, which has made those existing insecurities worse.
Beyond that, there’s a deeper feeling I sometimes struggle with, a sense of being less than, almost less of a woman, because of how much the possibility of not being able to have children scares me. It feels like giving birth is something our bodies were built to do, and the thought that I might struggle with that makes me feel like I’m not good enough, like I’m somehow failing at something fundamental to being a woman. Even though my boyfriend has told me he understands and that it’s okay, and even though he’s said he isn’t sure if he wants children himself, I still can’t shake the feeling that I’ll end up being a disappointment.
How has endometriosis affected your family relationships, friendships, or dating life?
I don’t think it’s had a negative impact on my friendships or my relationship with my boyfriend. They’ve all been incredibly supportive throughout this. Family has been a different story, though. Some of them dismissed me, especially after my recent surgery, saying I only did it for attention. Which doesn’t even make sense to me, since attention is the last thing I want from something like this.
Has endometriosis had an impact on intimacy or your sexual life?
Yes, endometriosis has made intimacy with my boyfriend difficult at times because of the pain involved.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
Endometriosis has had a big impact on my thoughts around fertility, even though I haven’t started actively planning for children yet. Since I was 19, I’ve carried a strong fear, almost a premonition, that if I hadn’t had children by 25, it would become very difficult or impossible for me afterward. Now that I’m almost 27, that fear has only grown stronger.
Even without actively planning for kids yet, the desire is always there under the surface. Whenever I see a child, especially a baby, my heart swells. Even something as simple as baby clothes or baby shoes gets to me, especially the little onesies with animals on them. It makes me want a child so badly, and then that same fear creeps back in, the worry that I might not be able to have one.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
My boyfriend has been incredibly helpful and supportive, especially during my period. He makes sure I’m comfortable, brings me tea and heating pads, and makes sure to give me plenty of hugs and cuddles. He doesn’t want me getting out of bed for anything, and if I do need to, like to eat or use the bathroom, he helps me.
Do you feel supported in your journey? Who or what has helped you most?
Yes, I feel very supported by all my friends and my boyfriend. My boyfriend has probably been the biggest help. He is always there to remind me to advocate for myself and helps me prepare to ask my doctor for things like scans.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I haven’t contacted anyone online but one of my coworkers, someone a few years younger than me, has endo as well. We have bonded over this as we shared our own experiences finding out we went to some of the same doctors and had the same experiences. She had her endo surgery before me and told me all about how hers went and what kind of scans I should ask for and gave me advice. She actually just had her second surgery a week before I had my first one.
How has your relationship with endometriosis changed over time?
Over time I think I have gotten to know myself and the condition better. I know what works to help with the symptoms and what doesn’t. I know what my limits are physically and mentally, when I need to take a step back. Most importantly having endo has made me be able to stand up for myself more, and not just in a medical setting. I’m usually a pretty shy and reserved person, but learning to advocate for myself in health settings has transferred over to work and family and friendships, etc.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I feel like there needs to be more money put into research. More research needs to be done, more clinical studies that involve women with the disorder. There needs to be more education about it. I think as researchers are now discovering more about the condition, every doctor who treats female patients or just any doctor in general, including pharmacists, should be taught about the condition. It should be taught in medical schools, in health classes in school. It should be basic knowledge for everyone since it affects so many women and so many go undiagnosed for years. I was lucky and got a clinical diagnosis in the span of a few months and doctors who decided to treat me as if I had it instead of telling me I was dramatic.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I would like it to be represented more. I think everyone should be educated on it because you never know who might be dealing with it. In today’s day and age, most people get their information on social media so if more doctors and specialists post about it on social media, I think it could make a big difference.
What would you like more people to understand about endometriosis?
It is NOT “just a bad period”. That is a common misconception. It’s a condition that can affect the whole body. I’m not sure of the correct number, but I know that endo is associated with many other health conditions.
When you think about the future, what fears, concerns, or hopes do you have?
I hope that one day there will be better treatments, maybe even a cure for Endometriosis. I hope that getting diagnosed doesn’t take years and multiple scans or surgeries, that it can be diagnosed younger. I hope more people become educated and understand what this condition really is, how it takes a toll on someone’s body, on their mental state.