Nine Years of Being Told It's Normal: What the Endo Diagnosis Delay Does to Your Mental Health
Hey Friend!!
New numbers came out of the UK this week, and if you live with endometriosis, they will not surprise you. They might still make you want to throw something.
The average wait from first doctor's visit to an endometriosis diagnosis has climbed to more than nine years. Not shortened. Climbed. Almost half of the people surveyed saw their doctor ten or more times before anyone named what was happening. And 83 percent, more than eight out of ten, said a healthcare practitioner told them they were making a fuss about nothing.
If you are reading this in Michigan with a heating pad on your abdomen, you probably did not need a report to tell you any of that. You have lived it. The appointments where you rehearsed your symptoms in the car so you would sound credible. The specialist who suggested stress. The years of wondering whether you were actually sick or just bad at coping.
Here is what I want you to know, as a therapist who works specifically with the mental health side of endometriosis: the damage from those years is real, it has names, and it is treatable. Even if your medical journey is still a mess.
The wound underneath the pain
Endometriosis is a whole-body disease. But there is a second injury that almost nobody treats, and it is not caused by lesions or inflammation. It is caused by being disbelieved.
When you tell the truth about your body over and over, and the people with authority keep telling you it is normal, your brain does something very logical. It starts to distrust the messenger. And the messenger is you.
So you learn to minimize. You say "it's not that bad" while canceling plans for the third time this month. You apologize before describing your pain. You keep working, keep caretaking, keep performing fine, because somewhere along the way you absorbed the idea that your suffering was a personality flaw instead of a symptom.
Clinicians have a term for the pattern that follows people out of those exam rooms: medical trauma. Your nervous system logged those dismissals as threats. That is why your heart pounds in waiting rooms. That is why a new symptom sets off a spiral of "is this real or am I overreacting." That is why hope, like this month's headlines about faster tests, can feel strangely unsafe. Your body learned not to get its hopes up, because hope kept getting punished.
None of that means something is wrong with you. It means your mind adapted to an environment that kept telling you not to trust yourself. It adapted exactly the way minds do.
The grief nobody brings casseroles for
There is also loss in those nine years, and it deserves to be named as loss.
The career decisions made around flares. The relationships strained by pain you could not explain. The fertility questions that arrived before you were ready. The version of yourself, energetic, spontaneous, unafraid of her own body, who quietly slipped away while you were busy surviving appointments.
Therapists call this ambiguous loss: grief for something that did not die, so no one gathers around you, no one sends flowers, and you end up mourning alone and feeling melodramatic about it. You are not melodramatic. Losing years to a disease the system failed to find is a real loss, and grief is the sane response to it.
What therapy actually does here
Not the generic version. Here is what working with a therapist who understands endometriosis actually looks like.
We treat the medical trauma directly. That rehearsed, braced, apologetic feeling before appointments can change. You can walk into a doctor's office regulated and clear instead of activated and shrinking. That alone changes the care you receive.
We work with your nervous system, not just your thoughts. Chronic pain and chronic dismissal keep your body in a threat state, which amplifies pain and anxiety in a loop. Somatic work helps your system find enough safety that the loop loosens. This is not "the pain is in your head." It is the opposite: your pain is real, and your nervous system deserves support for carrying it.
We name and move through the grief. The lost years, the changed body, the shifted plans. Grief that gets witnessed becomes carryable. Grief that stays hidden becomes depression.
And we rebuild self-trust. The quiet, radical work of becoming someone who believes her own body again. For clients who want it, faith can be part of that rebuilding. It is always optional and never assumed.
You do not have to wait to be believed
Maybe you are still fighting for a diagnosis. Maybe you have one and thought it would fix more than it did. Either way, you do not have to wait for the medical system to catch up before you get support for what all of this has done to your mind.
I am Kymberly, a licensed therapist in Michigan, and this intersection, endometriosis and mental health, is the heart of my practice. I offer telehealth across the state, so you can meet with me from your couch, heating pad included.
If any of this felt like reading your own story, let's talk. Book a free 15-minute consult. No pressure, no performance, no need to prove your pain. Just a conversation about whether this work is right for you.
You were never making a fuss. And you do not have to carry this alone.
All the best,
Kymberly Kremnitzer, LMSW
The Rooted Therapist MI, PLLC
Sources
Hertility Health: The 2026 Endometriosis Report: Why Are We Moving Backward? (approx. July 23, 2026)
Endometriosis UK: diagnosis report page (underlying data, earlier 2026)
Deseret News op-ed by Rep. Mike Kennedy and Mary Alice Marriott Hatch (July 22, 2026)
Contemporary OB/GYN: New research aims to transform endometriosis diagnosis (UCSF interview) (July 21, 2026)
Contemporary OB/GYN: Remnant cholesterol linked to endometriosis risk (approx. July 24, 2026)
International Journal of Women's Health: remnant cholesterol study
NICE: New technologies for endometriosis diagnosis in primary care (July 7, 2026; consultation closes July 27, 2026)
Michigan context: WLNS on MSU's NIH grant (May 2026), WZZM13 on Corewell/BAMF imaging (June 2026)