Hi Bruna, I started having painful periods around the age of 17. My entire life, multiple OBGYNs would just give me birth control to stop my period and the pain that comes along with it. No one even recommended to be seen for it. What I didnt know was that endo can continue to progress while on birth control. I was first diagnosed with adenomyosis through an IVF center by doing a contrast ultrasound on my Uterus, which my SO paid for. I went through the IVF process, and was given lupron from the center. This was about 5 years ago. My body could not tolerate Lupron so I was on it a short time. I also did an MRI that confirmed Adeno with "possible endometriosis" around that time. There is currently no way to diagnose endo except for a laparoscopy or a contrast MRI (endo only shows if your organs are effected). I started having constant pelvic pain outside my period after my birth control implant stopped working over this past summer. I got a new one reinserted as soon as I could but constant pelvic pain already developed. I was just diagnosed with Stage IV DIE in march, two nodules, and some of my organs stuck together. I now need to go through pelvic pain therapy and serious surgery. The problem is their are no ways of diagnoses except a lap. If you do a lap in earlier stages, OBGYNS do ablation, not excision. Ablation has been SHOWN to make endometriosis grow back worse. I basically had no way of knowing I would be here today or that my endo was growing, until pain progressed to effect my daily life. Every woman should get a specialist, we need more of them, and we need regular OBGYNs to be more informed of this disease. I suspected endo but when I found out I had it and how bad it was, I was told my organs are stuck together and the doctor asked me about a colonoscopy bag with surgery! (Which scared the crap out of me). Colostomy bags are more rare generally. Ive spent months informing myself on this disease.

The truth is there is not enough research into this disease. Many supplements have been shown to be effective in studies, by either stopping growth or helping your body heal from endo tissue, yet no one is doing the studies! There have also been known markers of the disease to be shown in blood, so Im not sure why this isnt a way to be tested. I decided to try certain supplements myself based on the research of it prohibiting endo growth and getting rid of current growth and scar tissue while waiting for surgery. I guess you can say I will be my own guinea pig. I will be taking them before and after surgery. Women who see specialists have a much higher chance of endo not coming back. I am hoping that I can get this resolved completely now, as its ruined many parts of my life, especially now. Thank you for speaking on this disease, and I hope you can mention the statistics in your speech and help push for more and better care and research for this disease. ❤️

Congrats on your TEDtalk!! Thank you for talking about endo!❤️Since first experiencing endo symptoms at age 12, it took me 10 years to get officially diagnosed in April 2026. Before I found my endo specialist (my favorite doctor ever), one gynecologist had said to me “you can have painful periods without having endometriosis.” She said this in response to me saying I was concerned I had endo because I was often unable to move from pelvic pain and had been in the ER twice. It felt like she was dismissing the disease entirely as even a possibility. That was the last time I saw that doctor. I was later diagnosed with severe, deep infiltrating endometriosis that was causing organ disfunction.

I was diagnosed with endometriosis, adenomyosis and interstitial cystitis “officially “ when I was 21. I am now 30. I knew something was wrong for years before. The fact that surgery is the only way to diagnose it is crazy. I went to countless appointments searching for answers. A male doctor dismissed me saying that “being a woman is hard.” I did my own research and finally went to an appointment prepared to talk about my suspicion of Endo. I had a RN pull me aside and basically told me to just drop the whole subject because no doctor will touch the subject or take it seriously. I was appalled. I didn’t even know what to say to something like that from someone whose job is to literally help me. A doctor FINALLY took me seriously and gave me a referral to an endometrial specialist. The problem is that it’s a long drive and it’s hard for my to keep appointments. There is nobody closer to me and that’s an extreme issue for me.
Congratulations on your TED talk! Do us all proud! 🤗

Hi Bruna, I had an 18 year delay in diagnosis. I was finally diagnosed by MRI in 2023, confirmed by my first lap a month later. I was 33 at diagnosis. I read the MRI result but when I went to review it with the prescribing doctor she said to me "so let me know when you want to schedule your hysterectomy" which was really shocking because I was basically going from 0 diagnosis and lots of gaslighting to a 100% confirmation of advanced disease requiring hysterectomy. It was a shock for sure. I was able to have a baby before I did get a hysterectomy in Oct of 2025. My first symptoms were before my period- I had bladder pain. Today I know I have bladder endometriosis. I also had adenomyosis and endometriosis on my hypogastric nerve which made me chronically constipated.

Hi Bruna,

Thank you for taking the time to speak out about this horrible condition!
-It took about 3 years to be diagnosed
- At 22 after having my second surgery being diagnosed with stage 4 endometriosis my doctor told me I should have frozen my eggs yesterday and that I will not be a mother… verbatim

Thank you again for your time and efforts,

~Victoria R.