I’ve learned so much from others who have been willing to share their stories with me. Stories have helped me identify symptoms, find the right providers, and ask the right questions. They’ve also helped me to feel seen. That means so much when you suffer from a chronic illness that is invisible in so many ways - the ultrasound techs who weren’t trained to scan for endo, the ob/gyns who dismissed my pain and concerns for decades, the lack of information available to the general public, the way so many of us push silently through fatigue, brain fog and pain. I’ve also learned that sharing my story helps others, especially as I’ve spent more time in the endo community here in San Diego. The community care in the endo world is saving lives and offering support that can’t be found elsewhere. So, here it goes..

Two years ago, I was diagnosed with endometriosis. If you don’t know much about endo, this might not seem like a big deal. For me, it has completely changed my life. My health had been severely declining before my diagnosis, but I had no idea why. My physicians should have been able to connect the dots, but they didn’t. They often won’t. Hence, my sharing.

While my worst years with endometriosis were the few before my diagnosis, I can track symptoms all the way back to puberty. While I had no idea I could have endometriosis, I tried many times, for decades, to speak up about those symptoms to countless doctors. It took 24 years for a doctor to finally validate everything I’d been through - and for me to receive life-changing excision surgery from a specialist.

It started earlier than I knew

My first symptom was unrelenting tailbone pain that started in middle school after I started my period. I thought it was due to an injury. A friend had pulled my chair out from under me as a joke. That pain persisted and worsened for 20+ years. I ended up having significant endo in the “pouch of douglas” and on multiple pelvic ligaments. Tail bone pain is often one of the earliest signs of endo.

Next came very heavy periods. Starting in my teens, I would often bleed through my clothes during the day and wake up in pools of blood at night. I also passed clots. My periods were painful but not the kind that kept me out of school. Sometimes cramps would take my breath away (especially in the 20’s and 30’s) but never caused me to double over or require me to lie down (until I was 38 years old). I had a friend who would miss school due to her periods so I figured mine were typical.

Throughout my teens and 20’s I was on and off birth control for about 10 years. I had a terrible time with side effects and mood instability. Looking back, the only pills I felt good on were low dose pills. I do think birth control was the reason I wasn’t familiar with my body’s cycle and why some symptoms were masked.

Around age 18, I started to experience sciatic pain. I thought it was because I was a dancer and a past gymnast. Perhaps it was but I now know it was also endo. These symptoms became progressively worse over the following 20 years causing significant mobility issues during and after pregnancies.

Around age 25, I started to notice that I had an increase in urinary urgency and felt I couldn’t fully empty my bladder. My physician ordered a bladder emptying study, findings were normal, and I was sent on my way. I’d later discover endo was on my bladder and ureters.

Through my three pregnancies between 2013 and 2021, I had significant nausea, hip and leg pain, and symphysis pubis dysfunction. After my second birth, I started having severe pain in my rectum with bowel movements. My OB at the time felt it was hemorrhoids. After my 3rd birth, once my period returned, I was using a menstrual cup. Inserting and removing that cup in the first 3 days of my period were absolutely excruciating. After my 2nd and 3rd births, I couldn’t wear anything with pressure on my belly without becoming nauseous. I couldn’t do basic core rehabilitation exercises on my back without the same reaction.

Over time, other symptoms showed up: hormone and mood instability, anxiety, depression, ovulation and period “flu,” migraines, and increasing fatigue. I managed. I just kept going. I assumed I was just someone who didn’t feel great sometimes. I figured it was all due to the stress of parenting, career, and lack of sleep. I had brought things up so many times only to be reassured it was nothing. Why would it think it was something?

The years before diagnosis

In 2020, we unknowingly moved into a house with mold. During this time, I was pregnant with my third son. It was a miserable pregnancy - nearly constant nausea, leg and back pain, migraines, and gestational diabetes - all in the thick of COVID - no support, a move during my first trimester, 2 young children, figuring out how to maintain my group practice and my husband in a career transition. I know we all have those stories! Postpartum I was sick constantly - for nearly three years, until we moved again. During that time, my symptoms escalated. Due to the stress we were in, it was easy to attribute everything to that. I started having random, intense vomiting episodes, especially while traveling. My brain fog was so thick, I couldn’t recall the names of people I knew well. I had worsening allergy symptoms and weird reactions to food and alcohol that didn’t show up on any blood tests. And my periods became something else entirely.

In July of 2023, I had the worst period of my life. I had uterine cramps and severe rectal cramps that were like having a 20/10 level charlie horse in your butt. The cramps were so severe I couldn’t move from the couch. I was screaming in pain while my husband and three boys stood around me, completely helpless. That was the moment I finally KNEW something was genuinely wrong. Ironically, I popped 800mg of ibuprofen, waited for it to subside, scheduled an OB visit and went on with my day.

The road to diagnosis

What followed was a gauntlet that will be familiar to many women with endo.

My OB, new to me, told me I had probably caused my own pain by taking Vitex, a widely used herb with loads of historical evidence and some scientific evidence for premenstrual issues (especially if you have low progesterone - which I did). He was visibly angry. He noted that I had not brought up period pain before (this was my 2nd visit with him). He told me to take Advil and to stop taking the herb. He said my generation knows too much and worries too much. His female nurse asked if I was in therapy (I was but also f-u). I left his office fighting back tears and rage.

A second OB was more willing to help. She offered an exploratory laparoscopy and Orlissa but didn’t bring up endo. I was the first to bring it up. For those who don’t know, Orlissa is a medication that will basically put you into chemical menopause. This puts you at risk for a myriad of serious side effects including osteoporosis. While I’ve learned it can have some use in certain short-term circumstances for endo, it was not appropriate for me. I politely declined the Orlissa. Eventually, after some pushback, she prescribed oral progesterone, which she initially said wouldn’t help my pain. It did. I do have to give this OB credit though. Once I became educated about excision surgery and inquired with her, she was honest about the fact that she wouldn’t be the right surgeon to perform endo excision surgery because she could only use ablation techniques. She canceled my exploratory lap and recommended a minimally invasive gynecologic surgeon (MIGS) in the same group. This MIGS OB sat across the room from me, never examined me, never collected a thorough history or asked me questions about my pain, and told me I wasn’t a candidate for surgery. This was actually a blessing because it turns out she also only performed ablation surgery (but even worse - she claims she does excision). Her recommendation: start birth control. When I said I wasn’t interested in birth control at this time due to past experiences she said, “I’m a doctor who wants my patients to make the choices that are right for their bodies but if you have endo and won’t take birth control then I really can’t help you because you won’t help yourself.”

Then I found Dr. Chandra Spring Robinson.

She took my full history. She asked good questions. She believed and affirmed every single symptom I shared. She expertly and thoroughly examined me and had her specialist ultrasound tech perform a thorough scan. She walked into my follow-up appointment and said, “Well my dear, you have endometriosis and probably quite a bit of it.”

I said, “Oh shit.”

After everything- every symptom, every dismissed complaint, every doctor’s visit, I could hardly believe it. I still thought maybe I was overreacting (I continue to grapple with that to this day). But my perseverance and trust in myself (and a lot of privilege) finally got me to the right person. She saved my life. Her words took decades of confusion, suffering and pain and turned them into affirmation.

Excision surgery and what came after

Even though I was reeling from this diagnosis, it didn’t take me long to decide on excision surgery. She also identified adenomyosis, so we discussed the pros and cons of a hysterectomy. I chose to have a total hysterectomy as well which means I kept my ovaries but everything else was removed - fallopian tubes, uterus, and cervix. I was fortunate to have had three children and was done. I wanted to give myself the best chance of relief.

I felt like I crawled to that operating table. Looking back, I genuinely believe that if I had waited much longer, I wouldn’t be fully mobile today.

Endometriosis lesions were found on my bowels, ovaries, bladder, ureters, peritoneum, uterosacral and broad ligaments, rectum, uterus, connective tissue attached to my cervix, and the rectovaginal septum (also known as the “pouch of douglas” which is the space between the rectum and vagina). My bowel and ovaries were adhered to my pelvic wall and pelvic brim. There were additional adhesions throughout my pelvic cavity - especially my ovaries. My left ovary could no longer move. Fibrosis and signs of inflammation were identified in several areas of my peritoneum (the lining that extends throughout your abdominal wall over your organs). My rectum and vagina were adhered to each other (now we understand the debilitating rectal pain).

There are 4 stages of endometriosis. I was stage 3. Even with all I’ve shared, my case isn’t even close to the worst out there. Crazy, right? A quick note on stages - they are based on how much endo is found, where the endo lesions are found, adhesions, fibrosis and whether there is deep infiltrating endometriosis (DIE). They do not reflect pain. There are people with stage 4 that have no or few symptoms and people with stage 1 that have significant pain.

Recovery has not been linear. I felt significantly better after surgery compared to before — but fatigue, brain fog, migraines and digestive issues continued. In January 2025, I was diagnosed with SIBO. It took three rounds of Xifaxan and additional support to clear it. Once it resolved, my MCAS improved although I believe it continues to impact me. Recently, things have shifted again — SIBO might be back. I’m learning this is an ongoing journey. You don’t recover from 24 years of unchecked endometriosis growth and adhesions overnight, even with excellent surgery. Healing has become a full-time job: acupuncture, chiropractic care, Pilates, pelvic floor PT, nutrition, and regular visits with my endo surgeon, urologist, gastroenterologist, and other specialists are all still part of my life.

What I want you to know

Endometriosis isn’t just a pelvic disease, and it isn’t just a cause of infertility- I had three uncomplicated pregnancies. It doesn’t resolve with childbirth or birth control - mine got worse. Even when symptoms are mild, lesions can continue to grow and spread. They generate their own blood supply and estrogen, similar to cancer — but it’s not cancer. Endo has been found in the pelvis, bladder, intestines, diaphragm, lungs, liver, and in rare cases, the brain, eyes, and shoulders. A normal ultrasound or pelvic exam does not rule it out. Most OBs and general ultrasound technicians are not trained to identify it. Even with a specialist, imaging has limits.

Dr. Spring Robinson is the only physician I know of in San Diego who performs many excision surgeries a week and has done over 1,000 of these procedures with consistently positive outcomes. In a city of nearly 700,000 women. I’ll just leave that there.

If I could go back and tell my younger self one thing, it would be this: you are not dramatic. You are not exaggerating. You know your body better than anyone in that exam room. If something feels wrong, it is worth pursuing - a second opinion, a third, a specialist who will actually listen. Good excision surgery is giving women and people with endo their lives back, but you have to get to the right person first. Keep going until you do.

I spent 24 years wondering if I was making it all up. I wasn’t. Neither are you.

This post wasn’t created for sympathy; it was created to inform. Please share it with anyone in your life who may need it.

Stay tuned for more on community care, finding a provider, and some special posts for dietitians…

— Lindsay Stenovec, MS, RD, CEDS-C

I kept stopping myself. I wasn’t sure I had enough distance from it yet. I wasn’t sure what I wanted to do with it professionally. I wasn’t sure anyone needed another person on the internet sharing their health story.

Then, during Endometriosis Awareness Month, I posted something publicly for the first time about my endometriosis diagnosis and, within minutes, colleagues and past friends reached out to tell me they have it too. I had no idea. One friend messaged me, wondering, for the first time, if her debilitating symptoms could be endo.

That’s when I felt it—the undeniable impact of visibility when endo sufferers can feel so very invisible. If sharing a tiny bit about my story to my tiny corner of the internet can make that kind of impact, I can’t stop there.

My name is Lindsay Stenovec. I’m a registered dietitian based in San Diego with 17 years of experience, most of it in eating disorders, feeding, and women’s health. I ran a nutrition practice for 15 years. I thought I understood women’s bodies and women’s health pretty well.

I did not understand endometriosis. Not even close.

In 2024, after four years of progressively worsening health and a lifetime of symptoms I had been told were normal, I was finally diagnosed with endometriosis and adenomyosis. No longer being able to keep myself afloat, I closed my group practice in eating disorders, the business and specialty I had poured everything into for 15 years. It was equal parts soul-crushing and utterly relieving. It was the first time in my life that I had no idea what I’d do next or when I’d feel ready to return to work.

Later that year, I would have excision surgery with a specialist (Dr. Spring-Robinson in San Diego) and a total hysterectomy for adenomyosis. I took time — two years — to grieve, to learn, to sit with the discomfort of losing my love for my career, and to slow my life down to the pace my body could handle.

I am still healing, and I’m still learning. I will be forever. Endometriosis, a chronic full-body disease, had been growing lesions and forming adhesions unchecked in my body for at least 24 years. The impact of that doesn’t resolve in a few months, even with the best surgery. It changed my body in ways I still don’t fully grasp because the science and medical community haven’t grasped it yet. You kind of have to thoroughly study it and train physicians for that to happen (wink, eye roll, scream into the void).

But something shifted for me in March of 2026. I realized that the last two years of living this — the misdiagnoses, the doctors who dismissed me, the surgery, the SIBO, the MCAS, the fatigue, the slow climb back — have given me something I didn’t have before. Not just as a patient, but as a clinician.

I know what it feels like to sit across from a doctor who never touches you but condescendingly tells you that birth control is your only option and you’re not a candidate for surgery (only to have a specialist find and excise stage 3 endometriosis 4 months later). I know what it feels like to wonder if you’re making it all up.

And, thankfully, I know what it feels like when a kind, skilled, and specialized physician finally says: you have endometriosis, and probably quite a bit of it.

I know there are still hundreds of thousands of women and people waiting for those words.

This space is where I’m going to talk about all of it. The personal story. The science. The nutrition. The gut health connection. The overlapping conditions like MCAS. The providers who made a difference in my journey - not just by their knowledge but with their humanity. The things I wish I had known as a patient, and the things I think every clinician (especially dietitians) seeing women needs to understand.

I’m not here to have all the answers. I’m here because the silence isn’t working.

If you’ve found your way here, whether you have endo, suspect you might, love someone who does, or treat patients who do — thank you for being here.

There’s a lot more to say. I’m just getting started.

Next up: My full endometriosis story — from the symptoms I dismissed for decades to the surgery that changed everything.

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