CT Endo Warriors

10/16/2026

Endometriosis lesions, age and colour: colour is not a clock! 🔬🩺🎨

GENTLE REMINDER: I’m a husband learning alongside my wife, who lives with stage IV endo, adeno, and fibro. This is not medical advice but my own research and a wish to understand. THANK YOU! 💛

If you imagine endometriosis lesions as always being dark brown or black spots, you may be surprised to learn how many different appearances the disease can have. Endometriosis can be red, clear, pale pink, brown, blue-black, white, fibrotic, puckered or mixed in appearance.

That matters because subtle disease can be easier to miss.

But there is another idea I want to correct carefully: lesion colour is NOT a reliable clock that tells you exactly how old the endometriosis is.

Historically, researchers observed patterns suggesting that lesion appearance may change over time. Red or vascular lesions were sometimes described as earlier or more active, darker lesions as representing blood breakdown and pigment, and white fibrotic lesions as older scarred disease.

There is some biological reasoning behind those observations.

But real endometriosis is much messier than a neat colour timeline.

Studies examining lesions of different colours have found substantial overlap in biological activity and hormone receptor expression. Colour appears to reflect several things, including gland contents, bleeding products, blood vessels, fibrosis and the surrounding stromal response.

So you cannot reliably look at one lesion and say:

“That is red, therefore it is exactly six months old.”

Or:

“That lesion is white, therefore it is inactive.”

Or:

“Black lesions must hurt the most.”

The evidence does not support that level of certainty.

Endometriosis can appear as:

• clear or subtle vesicles
• pale pink lesions
• bright red or highly vascular areas
• deep red lesions
• brown lesions
• blue-black or dark lesions
• white or opaque lesions
• fibrotic or puckered tissue
• mixed-colour lesions within the same pelvis

Each appearance can represent different combinations of tissue, pigment, bleeding, vascularity and fibrosis.

Red or vascular lesions may contain a rich capillary network and active endometrial-type glands, but their colour alone does not tell you exactly how painful or clinically important they are.

Dark brown or black lesions may contain old blood breakdown products and haemosiderin pigment.

White lesions can be collagen-rich and fibrotic, sometimes causing puckering and tethering of the peritoneal surface.

Clear lesions can be subtle enough to blend into otherwise normal-looking peritoneum.

That last point is important because disease does not have to look dramatic to exist.

A tiny clear lesion can be easy to overlook.

A pale fibrotic area may not look like the classic black “powder burn” lesion many people associate with endometriosis.

Experience and careful inspection matter.

One fascinating study looking at pain responses during patient-assisted laparoscopy found that pain had little consistent relationship with lesion colour. Pain could even extend beyond the visibly abnormal lesion into surrounding normal-looking peritoneum.

That does not mean appearance is useless.

It means appearance cannot tell the whole pain story.

Pain depends on much more than colour.

Nerves.

Inflammation.

Location.

Fibrosis.

Adhesions.

Muscle guarding.

Sensitisation.

Nearby organs.

Your individual nervous system.

This helps explain something women are constantly forced to defend: visible disease burden and lived pain are not the same measurement.

A pelvis with only subtle-looking lesions can still hurt.

A dramatic-looking lesion may not necessarily be the most painful structure.

Colour is therefore useful for recognising different manifestations of disease, but it should not become another tool for ranking whose endometriosis is “real enough.”

Fibrosis deserves particular attention.

When tissue repeatedly responds to inflammation and injury, collagen-rich scar-like tissue can develop. Fibrotic disease may tether structures together, reduce normal movement and contribute to mechanical pulling pain.

A pale or white lesion can therefore matter even though it lacks the dark pigment many people expect endometriosis to have.

Imagine two pelvic surfaces that should glide over one another becoming connected by stiff fibrotic tissue. Now imagine the bowel filling, the bladder expanding or your body bending.

Movement in one structure can tug on another.

That can hurt regardless of what colour the fibrosis looks under a laparoscope.

Here is what can help when you read a surgical report or see photographs from laparoscopy.

Do not focus only on lesion colour.

Ask:

• Where was disease found?
• Was it superficial or deep?
• Was fibrosis present?
• Were adhesions found?
• Were organs stuck together?
• Was pathology taken?
• Which lesions were confirmed as endometriosis?
• Were any suspicious areas left because removal was unsafe?
• Were bowel, bladder, ureters or nerves involved?

Those questions tell you much more about the anatomical picture.

Histology can also matter because visual appearance alone is not perfect. Surgeons identify lesions based on experience and anatomy, while pathology examines removed tissue microscopically.

Even then, diagnosis and treatment decisions involve the whole clinical context.

I also want to mention something subtle that can happen emotionally after surgery.

You are shown photographs.

Maybe the disease looks tiny.

Maybe it is pale.

Maybe there are only a few visible spots.

And immediately you think, “Is THAT all? How could something so small cause this much pain?”

Please remember that a photograph captures appearance.

It does not capture nerves firing.

It does not show your muscle guarding.

It does not show how many nights you could not sleep.

It does not measure bowel pain.

It does not show the way fibrosis pulls when you move.

It does not measure what chronic pain has done to your nervous system.

Your suffering does not have to look dramatic in a photograph to count.

As my wife’s husband, I think one of the cruellest parts of chronic illness is how often women end up searching for visual proof impressive enough to justify what they feel.

You should not have to.

Medical images are useful.

Pathology is useful.

Surgical findings matter.

But none of them turns your lived experience into a competition.

This does not mean every subtle patch is endometriosis. Many normal tissues and other conditions can look unusual, which is why surgical expertise and pathology matter.

It simply means the disease has more appearances than the classic pictures most of us were first shown.

You deserve to understand what is happening in your body without being told that lesion colour can precisely tell somebody how old, active or painful your disease is.

Save this if you have ever looked at surgical photographs and wondered why your lesions did not resemble the pictures you found online. Share this with a woman who needs to know that endometriosis can be clear, red, brown, black, white, fibrotic or mixed, and that appearance alone does not measure her pain.

If medical images have ever made you question whether your disease looks “serious enough” to explain your life, my FREE 130+ page eBook “You Did Nothing To Deserve This!” was written to remind you that validation does not depend on having the most dramatic surgical photograph. Tap the link in my profile or bio for your free copy. The physical paperback is also available on Amazon; type “endometriosis validation” into Amazon’s search tab.

Lucjan 🎗

10/14/2026

10/14/2026

It is so hard living a double life. I quite literally have two different lives one that is on the exterior, right, we all have that and then I have another life that you can’t see and I guess that there are other people out there that live this way I don’t know how because it is quite exhausting honestly a bit of a mind f**k. **k

10/09/2026

I had really hoped that the stent placement would have eradicated the neuropathy symptoms. I am trying to not give up hope on finding relief but this journey has been so long.

10/07/2026

Scientists are increasingly investigating mast cells as an important contributor to endometriosis pain. Mast cells are immune cells best known for their role in allergies, but they also regulate inflammation and interact closely with the nervous system.

Studies examining endometriosis tissue have found increased numbers of activated mast cells within lesions, particularly in painful deep infiltrating endometriosis.

One human tissue study reported that roughly 89% of mast cells within endometriotic lesions showed signs of degranulation, meaning they were actively releasing stored inflammatory compounds. Researchers have also observed activated mast cells located extremely close—within about 25 micrometers—of nerve fibers in endometriosis lesions.

This close relationship between mast cells and nerves could help explain how inflammation contributes to persistent pain. When mast cells become activated, they can release histamine, tryptase, cytokines and other signaling molecules that can stimulate or sensitize nearby pain-sensing nerves, making them respond more strongly to normally tolerable signals. Estrogen may further influence mast-cell activity and the inflammatory environment surrounding endometriosis lesions.

Researchers therefore propose a neuroimmune feedback loop, where mast-cell inflammation increases nerve sensitivity and nerve signaling can further influence local immune activity.

10/07/2026

Pelvic nerves and endometriosis... ⚡〽️🔱

GENTLE REMINDER: I’m a husband learning alongside my wife, who lives with stage IV endo, adeno, and fibro. This is not medical advice but my own research and a wish to understand. THANK YOU! 💛

Your pelvis is not simply a collection of reproductive organs sitting inside an empty bowl. It contains an incredibly complicated network of nerves responsible for sensation, movement and automatic functions such as bladder, bowel and s*xual function. Once you begin understanding that nervous system, some of the stranger experiences associated with endometriosis start making much more sense.

But there is an important distinction I want to make from the beginning. Endometriosis pain involving nervous-system mechanisms is not the same thing as endometriosis physically growing into a nerve. Direct involvement of major pelvic nerves can happen, particularly with some forms of deep endometriosis, but it is uncommon. Much more often, nerves may be affected indirectly by nearby inflammation, fibrosis, muscle tension, altered movement or persistent painful input.

That matters because social media sometimes jumps from “I have nerve-type pain” to “I must have endometriosis on my nerve.”

Those are not the same conclusion.

Your pelvis contains both autonomic and somatic nerves. Autonomic nerves help regulate things your body largely controls without you consciously thinking about them, including aspects of bladder, bowel and reproductive function. Somatic nerves are more involved in sensation and voluntary muscle function.

Important pelvic nerve structures include the hypogastric nerves and plexuses, pelvic splanchnic nerves, sacral nerve roots and branches that communicate with structures throughout the pelvis. Other nerves such as the pudendal, obturator and sciatic nerves may become relevant depending on where symptoms occur.

You absolutely do not need to memorise those names.

The useful part is understanding WHY protecting pelvic nerves matters so much, especially during surgery for deep endometriosis. These nerves help control functions you depend on every day.

A symptom can therefore be more informative than the name of a nerve.

You may notice:

• burning or electric pain
• pain that shoots rather than aches
• pins and needles
• numb patches
• pain following a repeated route
• pain into the buttock or leg
• altered sensation around the pelvis or perineum
• symptoms influenced by sitting or certain hip positions

Again, those symptoms do not prove nerve endometriosis. Spinal problems, disc irritation, muscular conditions, pelvic-floor dysfunction, previous surgery and other neurological problems can produce similar experiences.

Here is what can help you distinguish the story more clearly.

First, separate pain from sensation.

Pain might be burning, stabbing, shooting or aching.

Altered sensation might be numbness, tingling, pins and needles, unusual temperature sensation or feeling that an area is “different.”

Then separate both of those from weakness.

If your leg hurts, that is one thing. If you genuinely cannot lift your foot normally, your leg gives way, or a muscle no longer works as it usually does, that is another and should be clearly reported.

That simple separation can make your symptom description much more useful.

You might write:

• pain: burning through right buttock
• sensation: tingling down outer thigh
• strength: normal

Or:

• pain: shooting down back of leg
• sensation: numbness near foot
• strength: foot feels difficult to lift

Do not wait for social media to tell you which nerve that “must” be. Take the description to a qualified health professional.

New or progressive weakness, foot drop, saddle numbness, loss of bladder or bowel control, or other significant neurological changes need prompt medical assessment. Having endometriosis should never persuade you to quietly watch a serious neurological symptom because you assume you already know the cause.

Another reason pelvic nerves matter is that endometriosis lesions themselves and the tissues around them can interact with pain pathways. Research shows that endometriosis-associated pain may include nociceptive, neuropathic and nociplastic mechanisms. Chronic inflammation can sensitise peripheral nerve endings, while repeated pain signals over time may change the responsiveness of the central nervous system.

This is where language can accidentally hurt women.

If someone tells you your nervous system has become sensitised, that should never be translated into, “The pain is just in your head.”

Your spinal cord and brain are organs.

Your nervous system is biological tissue.

Changes in pain processing are physical processes.

Understanding sensitisation should broaden treatment, not remove legitimacy from your pain.

You may also notice that pain continues even after surgery or despite treatment that reduced some visible disease. There are many possible reasons for that, including residual disease, recurrent disease, adenomyosis, scar tissue, pelvic-floor dysfunction, nerve injury, another pain condition or sensitised pain pathways. Persistent pain deserves proper reassessment rather than the lazy conclusion that surgery “fixed everything” and therefore you should no longer hurt.

Here is something you can try today if your symptoms feel neurological.

Take a body outline and trace the exact route.

Do not just shade the whole leg because the leg hurts. Start where you first notice the symptom. Draw where it travels. Mark numbness differently from pain. Note whether sitting, standing, walking, bowel movements, s*x or menstruation changes it.

Then ask yourself one additional question: does it follow the SAME route repeatedly?

That information may be useful to whichever clinician evaluates you.

As my wife’s husband, learning about pelvic nerves gave me a completely different respect for how crowded and interconnected this part of the body is. The bladder, bowel, reproductive organs, muscles, blood vessels and nerves are not operating in separate little compartments. Deep disease in one small pelvic area can be sitting very close to structures responsible for functions that seem unrelated when you read them as a list.

That is why symptoms deserve curiosity rather than dismissal.

But curiosity is different from fear.

Please do not finish this post convinced that every tingling sensation means a nerve is being invaded by endometriosis. Direct major nerve involvement remains unusual. The purpose of understanding it is to know when symptoms deserve deeper investigation, especially when they are persistent, cyclical, progressive or accompanied by neurological changes.

This does not mean you have failed because your pain has become complicated. You deserve to understand what is happening in your body without being expected to solve neuroanatomy yourself.

Save this for the next time you hear somebody use the phrase “nerve pain” as though it automatically explains everything. Share it with a woman who experiences burning, shooting or travelling pelvic pain and needs better language for her next appointment.

If years of difficult symptoms have left you wondering whether you are simply “too sensitive,” my FREE 130+ page eBook “You Did Nothing To Deserve This!” is a reminder that validation belongs alongside education. You can get the free version through the link in my profile or bio. If you prefer the physical paperback, type “endometriosis validation” into Amazon’s search tab and you can find it there.

Lucjan 🎗

10/07/2026

What is the healthcare industry asking of me? To choose between insurmountable debt or medical diagnostics for a body that’s been neglected by medicine for eternity! My health insurance doesn’t cover MRIs or CT scans. A large percentage of my medical care is out of pocket. I have already delayed tests and am not receiving the care that I deserve for living with . I know how privileged I am to be able to access what I do have in place. However, my quality of life matters and the healthcare system is telling me that I don’t matter!

10/05/2026

Fighting to be medically understood when the entire female population has been under researched.

10/04/2026

Hip pain and groin pain together with endometriosis. 🩸🦴🩺💥

GENTLE REMINDER: I’m a husband learning alongside my wife, who lives with stage IV endo, adeno, and fibro. This is not medical advice but my own research and a wish to understand. THANK YOU! 💛

If you have endometriosis and keep rubbing the same hip or groin, especially around your period, you may have wondered whether two completely different parts of your body can somehow be connected.

Sometimes they can.

But the connection is more complicated than simply saying, “Endometriosis causes hip pain.”

Hip and groin pain have many possible causes, including ordinary musculoskeletal problems that have nothing to do with endometriosis. Tendons, joints, muscles, the lower back, pelvic floor, hernias and nerves can all produce pain in these areas.

The useful question is not whether every painful hip is secretly endometriosis.

The useful question is how pelvic disease might sometimes contribute to pain that you feel around the hip or groin.

One pathway is altered movement.

When your pelvis hurts, your body automatically tries to protect it.

You may shorten your stride.

Lean slightly to one side.

Avoid extending your hip fully.

Tighten your abdomen.

Clench your pelvic floor.

Sit differently.

Stand with more weight on one leg.

You may do these things for months without consciously deciding to do any of them.

They are protective adaptations.

But muscles do not know why they have been asked to work differently.

They simply respond to the new workload.

Over time, hip flexors, adductors, gluteal muscles, deep rotators and pelvic floor muscles can become tight, overworked or sensitive.

So the original pain may have started in the pelvis while a secondary mechanical pain develops around the hip.

That does not mean your endometriosis was “actually muscular.”

It means one problem can create another.

The hip and pelvis share anatomy closely enough that separating them perfectly is not always realistic.

Another mechanism is referred pain.

Your nervous system does not always give you a perfect map showing exactly where an internal pain signal originated.

Pelvic organs, muscles and deeper structures send information through overlapping spinal and nerve pathways. Sometimes the place where you perceive pain is not identical to the structure creating the original signal.

That is why pelvic disease can sometimes be felt in areas such as the lower back, buttock, groin, hip or upper thigh.

Then there are adhesions.

If previous surgery or endometriosis has contributed to scar tissue that restricts normal movement of pelvic structures, certain positions may create pulling or tension.

You might notice discomfort when taking a long stride, extending your leg behind you, twisting, climbing stairs, standing from a low chair or getting out of a car.

Again, that pattern does not prove adhesions are responsible.

But describing movement-related symptoms can give a clinician or pelvic physiotherapist far more useful information than simply saying, “My hip hurts.”

Groin pain deserves particular attention because several structures meet in a relatively small area.

Pelvic muscles.

Hip muscles.

Ligaments.

Nerves.

The inguinal canal.

And, in rare cases, endometriosis itself can occur in the inguinal or round-ligament region.

If you have cyclical groin pain or swelling, particularly a lump that becomes more painful around menstruation, that pattern is worth mentioning specifically.

Then there are the nerves.

This is where I want to be careful because nerve endometriosis sounds dramatic and it is easy to assume any tingling or leg pain must mean a nerve is being invaded.

Direct involvement of major pelvic nerves is uncommon.

But it can happen.

One example is the obturator nerve, which travels through the pelvis and contributes to sensation along the inner thigh and movement of the muscles that bring the thighs towards each other.

Rare cases of obturator-nerve endometriosis have been described.

Possible symptoms can include cyclical inner-thigh or groin pain, altered sensation, difficulty walking or weakness when bringing the leg inward.

Those symptoms deserve specialist assessment because weakness and neurological changes are different from ordinary aching.

The sciatic nerve and other parts of the lumbosacral nerve network can also rarely be affected by endometriosis, but pain down the leg has many much more common explanations.

This is why nerve symptoms should be examined rather than diagnosed from an infographic.

One clue worth recording is geography.

Where exactly does your pain travel?

Inner thigh?

Front of the thigh?

Buttock?

Back of the leg?

Straight into the groin?

Does it stop at the knee?

Does numbness accompany it?

Is there weakness?

These details matter because different nerves and muscles occupy different territories.

Another clue is timing.

Pain that predictably intensifies around menstruation or ovulation may make a pelvic contribution more worth considering.

Pain that appears exclusively after running five kilometres may point the investigation in another direction.

But neither pattern is absolute.

You can have endometriosis and an ordinary hip injury at exactly the same time.

That sounds obvious, yet once you have a major chronic diagnosis there is a temptation for everybody, including you, to put every symptom underneath that one label.

Please do not let endometriosis become a diagnostic blindfold.

A normal hip X-ray also does not necessarily settle the question because muscles, nerves and pelvic structures are not all assessed by a simple X-ray.

Likewise, finding endometriosis does not prove it is causing every groin symptom.

The job is to investigate both sides of the equation.

Here is what can help: create a small movement map.

For a few weeks note whether pain changes with:

• walking quickly
• climbing stairs
• long strides
• standing on one leg
• getting out of a car
• sitting cross-legged
• prolonged sitting
• bowel movements
• bladder filling
• s*x
• menstruation
• ovulation

Also write down whether the pain feels aching, pulling, burning, electrical, numb or weak.

Those words are not interchangeable.

An aching muscle after activity is a different clinical story from burning pain with numbness down the inner thigh.

A pelvic health physiotherapist can sometimes be particularly useful when pelvic pain has changed the way you move. They can examine hip strength, pelvic floor behaviour, muscle guarding and movement patterns rather than simply telling you to stretch whatever hurts.

Physiotherapy does not remove endometriosis lesions.

But if chronic pelvic pain has created a second layer of muscular protection, working on that layer may still improve function.

Sometimes treatment does not have to eliminate every cause before it is worthwhile.

Reducing one contributor still matters.

And please do not push through neurological symptoms because somebody told you movement is always good.

New weakness, persistent numbness, loss of coordination, significant difficulty walking or other neurological changes deserve medical assessment.

Likewise, sudden severe hip pain, inability to bear weight, fever, significant swelling or symptoms following an injury require appropriate evaluation.

Your body might be trying to tell you something useful through the pattern.

Not “never move again.”

Not “every pain means your endometriosis is spreading.”

Perhaps simply: “This movement consistently makes something hurt, and it deserves to be understood.”

There is a mindset shift I wish more women were given permission to make.

You do not need to choose between believing your endometriosis pain and investigating your hip properly.

You can do both.

You can see an endometriosis specialist and a musculoskeletal professional.

You can treat pelvic floor guarding while investigating deep disease.

You can strengthen your hip while respecting a flare.

Medicine works better when your body is treated as one body rather than several departments refusing to speak to each other.

Save this if your groin or hip seems to join your pelvic flares and you have struggled to explain the connection. Share it with the woman who keeps being told, “Endometriosis is in your pelvis, so it cannot possibly have anything to do with how you move,” because anatomy is rarely that simple.

And if living with strange, shifting symptoms has left you questioning whether you can trust what your own body is telling you, my FREE 130+ page eBook “You Did Nothing To Deserve This!” was written around rebuilding that sense of validation. You can grab it through the link in my profile/bio, while the physical paperback is available on Amazon if you type “endometriosis validation” into Amazon’s search tab.

Lucjan 🎗

10/01/2026

Loss of bone density happens in .