11/29/2025
This is beautiful that a husband is learning about his wife’s condition. It describes easily this complex diagnosis.
It’s frustrating as a Practitioner to see women suffer. Even worse when they are brushed off or do an ultrasound and not offered a laparoscopic look for endo.
What deep infiltrating endometriosis really does inside her body 🧬🩺💛
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.
Since my wife has deep infiltrating endo, I decided to explore this topic, well, deeper...
When doctors say “deep infiltrating endometriosis”, it can sound cold and technical. But what it really means is that endo hasn’t just sprinkled on the surface – it has burrowed deeper into the tissues inside her pelvis and sometimes into organs themselves.
Deep endometriosis is usually defined as lesions that go more than 5 mm under the thin lining of the pelvis (the peritoneum).
Instead of sitting on top like a sticker, these spots behave more like roots, pushing into ligaments, bowel, bladder, and even nerves.
Inside her body, that tissue still responds to hormones.
Each cycle, it can bleed, swell, and trigger inflammation in places that were never designed to handle it.
Over time, the body tries to “repair” this constant irritation. It lays down scar tissue (fibrosis) and can even turn surrounding cells into smooth-muscle-like cells that contract and pull, which is one reason the pain can feel deep, gripping, or stabbing.
In deep lesions, scientists find:
• Lots of fibrous scar tissue.
• Smooth muscle metaplasia (tissue behaving more like muscle).
• Dense nerve fibres growing into the lesion.
All of that together makes these spots not only inflamed, but also “wired for pain”.
Where can this happen?
Common places are the uterosacral ligaments (the strong bands behind the uterus), the space between va**na and re**um, the bowel wall, the bladder wall, and sometimes the ureters (the tubes that drain the kidneys).
So when my wife says it hurts to poo, to wee, or to sit, it’s not in her head. There may literally be deep endo nodules tugging on or invading those structures.
In the bowel, deep endo can narrow the passage, cause crampy pain, bloating, diarrhoea or constipation, and painful bowel movements, especially around periods.
In the bladder, it can cause frequency, burning, or pain when it fills or empties (sometimes mislabelled as “recurrent infections” even when tests are clear).
When the ureter is involved, the scariest part is that it can be silent. Deep endo can slowly squeeze this tiny tube, backing up urine and quietly damaging the kidney over months or years if nobody looks for it.
On top of all this, the nerves in and around these lesions can become extra sensitive.
Signals that would normally feel like mild discomfort can be turned up to “electric shock” or “knife” level, especially during periods, s*x, or bowel movements.
This is why deep endometriosis is often linked with severe pelvic pain, painful s*x, pain on opening bowels, and sometimes difficulty getting pregnant.
But it’s also why some scans that only look quickly, or some doctors who only think of “bad periods”, can miss just how complex the disease really is. Even MRI did not show my wife's endo, at all!
This is what confuses me, because international guidelines now place high-quality ultrasound and MRI at the centre of diagnosing deep disease, rather than relying only on “open you up and see”.
Really?
They say that expert imagers can sometimes see nodules in the bowel, bladder, or ligaments before surgery, when in reality these bowel endo always hides and is rarely detected, if at all, by scans...
I stand by the gold standard of laparoscopic diagnosis and biopsy to confirm it. This is how my wife was diagnosed, as her ultrasound and MRI showed nothing. And yet, they missed stage IV deep infiltrating endo???
When it comes to treatment, there is no single magic fix, but there are tools...
Hormonal treatments can lower estrogen and calm some bleeding and inflammation, though they may not fully stop pain from big fibrotic nodules.
For some women, especially with bowel, bladder, or ureter involvement, carefully planned surgery by a truly experienced multidisciplinary team can remove or shave off deep lesions and protect organs.
For others, the focus is on pain management, pelvic floor physiotherapy, gut care, and mental health support to help the nervous system and muscles settle.
If you’re reading this and recognising yourself, none of this means your body is ruined or hopeless. It means your pain has a physical, mechanical, and neurological story behind it and you deserve doctors who take that story seriously.
If you’re a partner reading this, you’re not crazy for feeling helpless.
But now you have a clearer picture of the battle happening inside her body, and that understanding alone can soften the way you respond when she says, “I can’t today.”
Deep infiltrating endometriosis is not “just bad periods”. It is deep, invasive, nerve-rich, scar-forming disease, and still, she gets up each day and tries again!
Lucjan 🎗
*xterna
