12/16/2025
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Why does your endometriosis pain spread from pelvis to back, ribs, and thighs over time? 🧠🩺🎗️
GENTLE REMINDER: I’m a husband learning behind my wife, who lives with stage IV endo and fibro. This is not medical advice but my own research and a wish to understand. Please share your real-life experiences so I can write more accurately for the next woman. Your lived truth matters more than anything. Tell me what I get right or wrong so I can keep learning and spread better awareness. THANK YOU.
One of the things that still shocks me is how endometriosis pain does not always stay where it started. For many women, it begins as “bad period pain” low in the pelvis.
But over the years it creeps outward, into the lower back, the hips, the ribs, the thighs, even down the legs and up into the chest or shoulders.
From the outside, people might think you are just “noticing pain more” or “getting more sensitive with age”. From the inside, it can feel like your whole body is slowly being taken over by something that nobody around you understands.
You are left wondering, is my disease getting worse, or is my nervous system simply overwhelmed?
Often, it is a mixture of both.
Physically, endometriosis can spread or deepen. Lesions that were once small spots on the peritoneum can grow into deeper nodules that reach ligaments, bowel, bladder, and the walls of the pelvis.
Adhesions can glue organs together so that when one moves, it drags others with it, pulling on nerves and muscles you did not even realise were connected.
The pelvis is also the crossroads for a lot of important nerves and muscles.
When lesions or scar tissue irritate those nerves, they can send pain signals along the routes they serve.
That is why pain can show up in the sacrum, tailbone, buttocks, inner thighs, or down one leg, even though the original problem is around the uterus or ovaries.
Then there are the muscles...
If you live with constant pelvic pain, your body naturally tenses to protect you.
The pelvic floor, abdominal muscles, lower back, and hip muscles all brace themselves, day after day, month after month.
Tight muscles pull on joints and on each other, so a spasm in the pelvic floor can create an ache in the hips, ribs, or lower back.
Over time, this creates a pattern.
Your posture changes without you even noticing. Maybe you hunch forward to guard your abdomen, or tilt to one side to avoid pressure on a painful o***y or scar.
Those small adjustments can eventually cause pain higher up in the spine, around the shoulder blades, or along the ribs. On top of all this, there is the nervous system itself. When pain is intense and repeated, the brain and spinal cord adapt.
They become more sensitive, quicker to react, easier to trigger.
This is sometimes called central sensitisation. It does not mean the pain is “in your head”; it means your whole pain system has been trained by years of alarm bells.
In that sensitised state, the brain can start to “over-interpret” signals from nearby areas.
A small twinge in the back becomes a big flare. Gentle pressure on the abdomen feels like an attack. Pain that began in one place may be “referred” or echoed in other places that share nerve pathways, so you feel it in your ribs, thighs, or even your arms.
Emotionally, this spreading pain can be devastating.
You might look back at old versions of yourself who could dance, hike, sit in a chair for hours, sleep in any position, and you grieve that freedom.
You might feel guilty for saying no to plans, or ashamed that things which seem “small” to others feel impossible to you now.
And every time you try to explain it, someone says, “But your last scan looked fine,” or, “Surely it can’t all be from endometriosis?”
Yet you are the one living inside a body that has been pulled, cut, inflamed, and doubted for years. Of course the pain has spread. Of course your nervous system is tired.
Gentle solutions are rarely one single treatment.
Sometimes further surgery helps if there is clear, deep disease causing mechanical pain. But even the best surgery cannot erase years of muscle guarding and nervous system overload.
That is why many women find they need a combination:
• pelvic floor physiotherapy
• nervous-system-aware pain care
• pacing, heat, gentle stretching
• trauma-informed therapy
• honest rest
• people who believe what they cannot see
As a partner, learning this helps me respond differently when my wife says, “It’s not just my pelvis today, it’s my whole back and legs.”
Instead of thinking, “But I thought they removed the lesions,” I can remember that pain behaves like ink in water – once it has been swirling for long enough, it touches everything. My role is not to question whether it “makes sense”, but to accept that her body is telling the truth, and adjust the day around that truth.
Because I am still learning, I would really love to hear from you. Always:
• Has your pain changed location over the years – starting as period pain and then spreading to your back, ribs, hips, or thighs?
• Do you notice certain triggers that make the whole-body pain worse, such as stress, overdoing activity, specific movements, or medical appointments?
• Did anyone ever explain central sensitisation or muscle guarding to you, or did you have to figure out on your own why your pain kept expanding?
If you feel safe to share, your experiences will help me describe this more honestly for the next woman who feels like her pain is “taking over” her body and is scared that nobody will believe her.
Your story might be the mirror that makes her feel less alone.
And if all of this hits close to home and you need deeper emotional validation, I poured everything I have learned so far into a completely free 130+ page eBook called “You Did Nothing To Deserve This!” on endometriosis validation.
It is my way of telling you, in one place, that your spreading pain, your exhaustion, and your feelings around it are real – and none of this is your fault.
The link is in my Facebook profile bio.
Lucjan 🎗
