Her Surgeon Thinks Her Endometriosis Was Mild Until Cycle Two Made It Stage IV. Could Yours Be Hiding Too?

mygiftedegg ยท September 29, 2026

Your first period after the retrieval was the worst pain of your life.

The next ones weren't much better.

Your GP said PMS. Maybe stress.

One donor heard the same thing, then woke up from surgery with a stage IV finding.

The Worst Pain of My Life

One donor had 18 eggs retrieved from one ovary and 21 from the other.

Her first period afterward brought "the worst pain of my life."

Maybe you know that sentence from the inside.

Donation pain gets lumped in with ordinary period pain, so nobody can say where normal ends.

Then her periods disappeared.

Then the Periods Stopped

For months, nothing came.

When her period finally returned, she was vomiting, feverish and unable to walk from the pain.

If you waited for things to settle, you did what most people do.

For her, waiting settled nothing.

The answer came from an operating room.

Months After Cycle Two, Stage IV

Surgery came just months after her second donation.

It revealed stage IV endometriosis.

Read that timeline again. Second donation. Months. Stage IV.

Her surgeon had a theory about how it moved so fast.

What Her Surgeon Believes

Her doctor said she likely had mild disease.

The hormones, the doctor said, made it extreme.

Another doctor described stimulation in someone with endometriosis as "pouring gasoline on your endometriosis status and symptoms."

Mild disease is quiet, and that's the whole problem.

Nobody checked before the hormones started.

Nobody Checked First

Some donors have severely painful periods before donating and are never evaluated for endometriosis.

The consent form covered OHSS and surgical infection.

Endometriosis, cysts and fertility loss were never on it.

So a donor can sign in good faith with a condition nobody has named.

Ask about the long term, and you'll hear a phrase worth reading slowly.

"No Known Long-Term Effects"

Donors are told there are no known long-term effects.

Most hear "none." What it means is that nobody has looked.

As one donor put it, "They never studied the long term effect of egg donation."

Clinics say severe OHSS is rare, and that's a population number.

The donor in the hospital lives it as a 100% event.

"Young and Healthy" Was a Guess

Donors are told they're young and healthy, with nothing to worry about.

One said, "I was young, and the concept of health as a fragile thing didn't register with me, I felt invincible."

Then severe complications came anyway.

The reassurance was a guess.

Helping a family is a real good, and that doesn't change.

What needs to change is what donors hear before they sign.

Some Donors Feel Nothing at All

One donor, delayed a month for cysts found at screening, later noticed "absolutely no long-term change."

A donor with endometriosis said her retrievals didn't worsen it.

Another was hospitalized with extreme OHSS in her first cycle, then had zero OHSS symptoms in her second after a medication adjustment.

Those stories are true, and so is yours.

A story can't tell you which body you have.

One doctor told a donor mid-process that a second donation "should be her last." She brushed it off.

Which brings you back to the question you ask at 2 a.m.

When to Call and When to Go Now

Nobody hands donors a line between annoying and urgent.

Severe OHSS can strike after a retrieval that "went fine."

Donors have described bloating, fluid pressing on the lungs and trouble breathing.

One felt "bubbles around my collarbone."

My rule is simple. Trouble breathing means go now.

So does pain that stops you walking, especially with vomiting and fever.

A period that's worse than it used to be, while you can still function, means a call and a booked appointment.

Either way, someone will ask you to explain, and that's where records matter.

Write It All Down

One donor's advice was short: "Really document everything."

Egg counts. Medications. The date of each retrieval. Which cycle was which.

Then the periods that vanished, when they came back, and how bad the pain got.

Nobody may ever prove the donation caused any of it.

A dated record still gives the next doctor a timeline to look at.

There's no registry or aftercare contact for donors, so yours may be the only timeline there is.

"They'll Think I'm Dramatic"

Going back a third time feels risky.

You worry it sounds like drama, or worse.

Look at what you'd actually be saying: dates, egg counts, months without a period, pain that stops you walking.

That's a history, and a history is what a doctor needs.

You're asking for a look, not a favor.

Ask whether stimulation could have made worse a condition you didn't know you had.

Ask to be checked for endometriosis.

Some people will call you a fearmonger, or say "but you chose to do it." Your record stays true anyway.

Your Next Appointment

Her timeline was a second cycle, a few months, then surgery.

Yours has a first period, a stretch of nothing, and pain that stops you walking.

Those are the details her surgeon worked from.

Bring them in order.

Book the appointment, and take your record with you.