I have a disease that affects 10% of women and almost no one talks about it

It takes 7 to 10 years to get diagnosed, and there's still no cure

Contrary to popular belief, painful periods are not normal. Common, yes, normal, no.

This post is for everyone who has a woman in their life with bad periods. If you’re that woman, this post is especially for you.

If you know someone who is suffering, send this to her. It might just help.

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A few weeks before my endometriosis surgery, I emailed my surgeon. “I have to cancel. I’m pregnant.”

His response was, more or less, “How is that possible?”

I was 36. I had deep infiltrating endometriosis in my pelvis and rectum, bad enough that I had a surgery date with multiple specialists involved. A few weeks before that surgery, I got pregnant.

People with endometriosis often struggle to get pregnant, and two years earlier, I was told I’d likely never be able to get pregnant naturally.

I wasn’t sure how it was possible, but I had an idea.

For years, I had been trying to manage endometriosis and avoid surgery. A few months prior, I put myself on a course of herbal antibacterials to treat SIBO (small intestinal bacterial overgrowth). It was Step 1 in a new protocol I was trying. I got pregnant soon after.

What is Endometriosis?

Endometriosis is when tissue similar to the uterine lining grows outside the uterus — on the ovaries, bowel, bladder, and pelvic wall. In rare cases, it grows as far as the diaphragm, and in extremely rare cases, the brain.

Every month, that tissue responds to hormonal signals the same way the uterine lining does. It swells, it bleeds, but unlike the uterine lining, it has nowhere to go.

The pain is often described as a knife twisting and stabbing your insides. Or labor contractions. I had an unmedicated homebirth. For me, endo attacks are worse. Yes… my once-a-month endo attacks are worse than giving birth.

Different women have different symptoms. Heavy bleeding, vomiting, diarrhea, shitting blood, passing out, pain during sex, infertility, fevers…. The list goes on.

Since 1/2 this newsletter is men:

It affects roughly 10% of women, takes an average of 7 to 10 years to receive a diagnosis, and there is no cure.

When I found out I was pregnant, I was terrified that we’d have a girl. Endometriosis runs in families — daughters are 5x to 7x more likely to have endo if their mom has it (men, it can be passed through your bloodline too). I didn’t want her to experience pain like this. As the universe would have it, we now have a beautiful, healthy baby girl.

Below is the research I’ve done for myself, my daughter, and everyone else who might be suffering.

Wait… How do 10% of women have this disease, and almost no one is talking about it?

For decades, diagnosis required laparoscopic surgery — general anesthesia, a surgeon, and a willingness to be cut open. Most women wait until the pain is unbearable.

Since it’s hard to diagnose, it’s hard to study, and hard to understand.

The disease also doesn’t show up on standard MRIs or ultrasounds. A woman can walk out of a normal scan with endometriosis on her bowel, bladder, and pelvic wall, and be told everything looks fine.

There’s also a training problem. Lesions are classically taught as black spots, but they can also be clear, pink, red, or white. A surgeon who doesn’t know exactly what they’re looking for won’t find it.

Thankfully, the diagnosis problem is starting to improve. In February 2026, ACOG ended the requirement for surgery to confirm a diagnosis. For the first time, treatment can begin based on symptoms and an exam.

There are also new blood tests, for example, EndomTest and HerResolve. They’re not FDA-cleared yet, and won’t catch every case, but it’s progress. There are a handful of other diagnostic startups working on the problem.

Better diagnostics unlock better studies. Regularly cutting women open to measure and monitor disease progression (or regression) is not a viable option, and a huge reason why research has been so slow.

How do you treat it? Spoiler alert: you don’t.

Women are given two primary options:

1. Birth Control

2. Surgery

Neither treats the root cause of the disease.

Birth control suppresses your cycle. It doesn’t eliminate lesions or address the underlying inflammation. It treats symptoms for some women.

By the time a woman stops birth control, the disease is often more advanced than when she started. This is one of the reasons why women are often shocked by super-painful periods when they come off the pill. The disease didn’t pause. It progressed. The lesions deepened, and adhesions formed. They just couldn’t see it.

Surgery is the closest thing to a real intervention, but recurrence rates range up to 67%.* Surgery removes the lesions without changing the biological environment that allowed them to grow. This is why I want to understand the disease and change my environment. I’m terrified it will just grow back.

*Most patients also don’t know that ablation (burning the surface of lesions) and excision (removing them at the root) are fundamentally different procedures with dramatically different outcomes. If you or someone you love is considering surgery, make sure it’s excision surgery with a trained specialist.

So what’s actually causing it?

These are the 4 root causes that I’m most focused on:

1. Immune dysfunction and inflammation

2. Poor gut health

3. Hormonal imbalances

4. Nervous system disruption

Notably, even if you don’t have endometriosis, it’s helpful to understand how these 4 systems impact your body.

Immune dysfunction fuels lesion growth

The immune system uses messenger chemicals called cytokines to tell your body what to do. Think of them like an alarm system. In a healthy body, if endometrial tissue ends up somewhere it shouldn’t, the immune system spots it, sounds the alarm bell, and clears it.

In endometriosis, those alarms don’t shut off. Instead of triggering a quick cleanup, they trigger blood vessel growth — the same process behind healing a cut. That blood supply runs straight to the lesion, drip-feeds it, and drives more growth.

To make matters worse, the alarms don’t stay contained. They flood the bloodstream and cause chronic inflammation. The whole body responds to alerts meant for one small patch of tissue. That’s likely why women with endo have higher rates of autoimmune diseases, IBS, chronic fatigue, migraines, brain fog, and other conditions.

Fighting the inflammation

Nothing below makes lesions disappear. Surgery remains the only thing that physically removes tissue. But several of these have shown real impact on inflammation and pain. NAC has shown measurable reductions in lesion size in human studies. Omega-3s and Vitamin C have shown similar reductions in small animal studies.

• Sleep is one of the few inflammatory levers you actually control. Poor sleep raises the same inflammatory chemicals already flooding your system, and chronic inflammation disrupts the sleep your body needs to regulate. It’s a loop.

• NAC (N-acetyl cysteine, 600mg 3x daily) reduces cellular damage from chronic inflammation. Small trials show a measurable reduction in endometrioma size (an ovarian cyst from endometrial tissue). This may actually impact lesion size, not just symptoms.

• Omega-3s (EPA-dominant, 1500–2000mg daily) directly modulate the inflammatory chemicals that cause cramping and lesion activity. The dosing matters here. Most commercial fish oil falls well short.

• Vitamin C (1000mg) + Vitamin E (800 IU) has RCT evidence for reducing pelvic pain and severe menstrual cramps.

• Vitamin D deficiency is common in endo and linked to worse inflammatory markers. Test and correct.

• Low-dose naltrexone (LDN): modulates immune function through an opioid receptor rebound mechanism. The evidence is mostly extrapolated from other conditions like PCOS and chronic pelvic pain — endo-specific trials are still in progress.

• Melatonin (10mg nightly) reduced pain scores and analgesic use in trials. It also improves sleep, which has its own anti-inflammatory effect.

• GLP-1/GIP agonists (semaglutide, tirzepatide) are on this list for their anti-inflammatory effects, independent of weight loss. There are no endo-specific trials yet, but the rationale is strong, and clinicians (and patients) are reporting anecdotal symptom improvement.

• There are a handful of clinical trials anywhere between phase 1 and phase 3, other studies, and endo startups.

The gut can’t detox properly and is recirculating estrogen

In addition to the supplements above (everything sleep - vitamin D), after I stop breastfeeding, this is where I’m focusing my energy.

“Endo belly” is one of the most common symptoms of endometriosis. Post-pregnancy, I can confirm: my stomach looks the same after most dinners as it did at four months pregnant.

If you have frequent bloating, constipation, “period poops,” or GI symptoms that worsen around your cycle, your gut isn’t a separate problem. It’s one of the most significant drivers of it.

Here’s how the gut fits in:

Your gut hosts a community of bacteria called the estrobolome. Their job is to escort used estrogen out of your body. Estrogen feeds lesion growth. When your gut is inflamed or constipated, that estrogen doesn’t leave. It gets reabsorbed, recirculates, and fuels endo. Your body continues to make new estrogen while reabsorbing the estrogen it tried to eliminate.

This broken estrogen-detox loop shows up in fibroids, PCOS, and bad PMS, too.

I first learned about the gut-endo connection from Dr. Iris Kerin Orbuch, one of the country’s leading excision specialists and author of Beating Endo.

Before she operates, she requires every patient to get a SIBO test. She won’t operate until it’s fixed. An unhealthy gut makes endo far more likely to come back after surgery. A 2025 peer-reviewed paper found that 91.9% of women with endo have SIBO. In addition to disrupting estrogen clearance, broader gut dysbiosis drives systemic inflammation.

What you eat drives all of this. Fiber feeds the estrobolome bacteria that properly clear estrogen. Ultra-processed food and excess sugar feed the bacteria that cause problems.

There’s no specific endo diet. A 2026 review of the full literature found no dietary strategy currently supported as treatment, and warned that restrictive elimination diets carry a real risk of nutritional deficiency without proven benefit.

That said, in a 2025 survey of nearly 2,400 women with endo, 53% who cut alcohol reported less pain, 45% for gluten-free or dairy-free, and 43% for caffeine. There isn’t peer-reviewed research to support cutting things, but if cutting something makes you feel better, it might be worth doing.

Personally, I’ve cut alcohol, gluten, dairy, most sugar, and caffeine (other than matcha). Any time I accidentally eat any of these things, I feel the inflammation. I hope that one day my gut will be stronger and I can tolerate more foods.

Breaking the loop

• Resistant starches and soluble fiber: feed the bacteria that clear estrogen. If you have SIBO, make sure these are SIBO safe since many resistant starches and fibers can aggravate SIBO. A well-studied option is Sunfiber. Other common fibers include flaxseed and chia seed, although both have mixed reported SIBO results.

• Magnesium at night (400–500mg): may support gut motility and help ease the constipation-reabsorption loop. A large NHANES study of nearly 9,500 adults found that higher dietary magnesium intake was linked to significantly lower rates of chronic constipation.

• Lactobacillus gasseri: a specific probiotic strain with endo-specific research behind it. Strain matters more than category here — some common probiotic strains, including certain other Lactobacillus species, can worsen SIBO rather than help. Do a stool test before starting probiotics.

And at a minimum, ask your doctor for three things:

1. a SIBO breath test

2. a comprehensive stool test

3. a liver panel (the other half of the gut equation is the liver and bile, more on this in a future detox post)

Each catches a different place where the process breaks down. If you want to see how your body is metabolizing estrogen, ask about the DUTCH test. It’s a more specialized urine panel that maps your hormones over time and flags where you’re struggling.

The hormonal environment is feeding lesion growth

This is the section where I’ve gotten the most conflicting advice. I’ve spoken to a dozen-plus doctors: western, functional, surgical, and naturopathic. Everyone has a slightly different answer. Partly because everybody is different, and partly because the research is limited.

Here’s what I’ve pieced together from doctor interviews, books, research, and my own experience.

In a healthy cycle, estrogen and progesterone balance each other out. In endometriosis, estrogen often stays elevated, feeding the lesions. Progesterone counters that dominance. It calms inflammation, and for most women, reduces pain and bleeding. Progesterone supplementation is an accessible starting point since every gynecologist can prescribe some form of it.

Three hormonal prescription options

They all have real side effects. I’ve learned the hard way. Discuss them with a doctor you trust first.

• Bioidentical and synthetic progestins are similar but not the same. Bioidentical progesterone tends to be better tolerated, with fewer breast tissue and lipid side effects. Synthetic progestins are cheaper, more widely available, backed by more clinical data, and proven to be more effective. I’m slightly skeptical that they’re actually more effective, but because bioidentical progesterone isn’t patentable, there’s no incentive to fund large trials.

• Dienogest (Visanne) gets its own callout. It’s a synthetic progestin that almost no American has heard of. It’s the standard of care in Europe, Australia, and Japan. Unlike most hormonal treatments that just change your hormonal environment, dienogest acts directly on the lesion, stopping it from spreading and cutting off its blood supply. It’s the only progestin option here with clinical evidence of actually shrinking lesions, not just slowing them.

• GnRH antagonists (elagolix, relugolix) block estrogen production from the start. These are especially useful for the 1/4 to 1/3 of women with progesterone resistance. These can shrink endometriomas somewhat, similar to menopause. They also carry the most severe mental health risks of anything on this list, including documented suicidal ideation.

Do your own research here. Find a doctor who actually knows this disease.

The nervous system is stuck in fight-or-flight

I’ve only kicked my endo attacks into remission twice since 2020. The most recent was after some big personal life shifts. I noticed that the safer, happier, and calmer I felt in my body, the less bad my flares were. Same lesions, same disease, totally different pain levels. That led me down the nervous system rabbit hole.

If you’re in pain month after month, your nervous system gets better and better at sending pain signals. Neurons that fire together wire together. This is called central sensitization, and it makes you more sensitive over time.

Your pelvic floor compounds the pain. Pain makes your muscles clench. Clenched muscles start to hurt on their own. Now you have another pain source feeding the same loop.

Your autonomic nervous system sits underneath both. You may have heard this described as your sympathetic and parasympathetic systems. The sympathetic triggers fight-or-flight. The parasympathetic shifts you into rest-and-digest (largely the vagus nerve).

A healthy body spends most of its time in rest-and-digest and only switches into fight-or-flight when there’s a real threat. After years of pain, the body starts to default to fight-or-flight. A body stuck in fight-or-flight never lets the sensitized pain system downshift. It just keeps sounding the alarm. Women with endo tend to run lower vagal tone as a result. The vagus nerve weakens from underuse.

This is partially why surgery doesn’t always fix the pain: the sensitized nerves, clenched muscles, and low vagal tone keep sending the same signals even after surgery.

What the research backs specifically for endo

• Pelvic floor PT is the strongest option here. Trials combining trigger point work, nerve release injections, and PT reduced pain, even in women who’d already had excision surgery. It treats the loop, not just the lesions.

• Sleep is incredibly important (sleep is always good!). Poor sleep raises inflammation and worsens central sensitization, and pain wrecks sleep right back. Fix the loop.

• TENS (an over-the-counter nerve stimulation device) has real-world trial support for reducing pelvic pain. Cheap and low-risk enough to try before anything bigger.

Other things that help nervous system regulation

I’ve benefited from all of these.

• Breathwork: women with endo have measurably lower vagal tone, confirmed via HRV data. Deep breaths with longer exhales are one of the only ways to directly recruit the vagus nerve.

• Stretching is mechanically doing PT’s job. Most pelvic PTs recommend stretching homework to release chronically clenched muscles.

• Shaking, singing, and humming are rooted in vagus nerve physiology, vibration, and vocalization near the vocal cords and diaphragm. Low-risk, and it feels good.

What to do with this

Send this to anyone you think it might help. If that person is you, bring this post to your next appointment.

A few starting points:

• Track your cycle, pain, and symptoms for a full cycle (or more) before your next appointment. Ask your doctor about finding an expert in your network.

• If surgery comes up, ask how many excision cases your surgeon does a year. Make sure it’s excision, and not ablation. Ask about recurrence rates and the plan post-surgery. If the only plan is “birth control,” I’d be very skeptical.

• Get a SIBO breath test, gut test, and a full lab workup to understand liver function, inflammatory markers, metabolic function, iron levels, and more.

• Ask about supplements, progesterone, pelvic PT, and other things on this list to manage symptoms.

I started writing this because I spent close to a decade managing a disease nobody ever explained properly to me. I wanted a plan for myself. I’ve spent too many months of my life throwing up, passing out, and shitting blood — fake smiling through board meetings, hikes, and family brunches. If my daughter ends up with it too, I want her experience to be better.

I’m optimistic. Our understanding of the disease, the diagnostics, and the drug pipeline are improving rapidly. And if you or someone you love is in the 10% of women who have endometriosis, I hope this helps you, too.

Thinking of you,
Julia Lipton

currently investing, researching, and helping friends build things

Big thank you to Evan Fisher, Alana Podrx, and Justin Mares for giving feedback and edits. And to Azure Grant and PeopleScience for helping people run studies on the disease.

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