“Painful periods are not normal.” That one sentence is the anchor we keep coming back to when we talk about endometriosis. Not because pain is rare, and not because it should be tolerated. But because the pattern of pain, the way it spreads through the body, and the way it gets dismissed for years can be dangerously common.
Dr. Thais Aliabadi and Mary Alice Haney want to help you connect the dots. If you have ever been told your symptoms are “normal,” if you have bounced between urgent care and multiple specialists with no answers, or if your pain touches your bladder, bowels, or sex life, this is for you. We are also going to go deeper into how endometriosis actually works, why it is hard to diagnose with routine imaging, and how treatment choices differ depending on your symptoms, age, and fertility goals.
Table of Contents
- What is endometriosis, beyond “painful periods”?
- Key symptoms you should not ignore
- Stages of endometriosis: why stage does not equal pain
- What causes endometriosis?
- How endometriosis can affect fertility and other organs
- Pain, nerves, and why even a small disease can feel extreme
- Why endometriosis can mimic GI problems and “leaky gut” patterns
- How endometriosis impacts mental health, not just physical pain
- How do we treat endometriosis?
- Hormonal treatment and suppression: why progesterone matters
- Endometriosis and fertility: egg reserve, AMH, and timing conversations
- Why removing endometriosis can help pregnancy
- A sister condition: adenomyosis
- What happens in perimenopause and menopause?
- Tamoxifen and estrogen signaling: a special warning
- How to choose a surgeon who can actually help
- Rapid answers to common endometriosis questions
- FAQ
- Takeaway: advocate for pain that changes your life
What is endometriosis, beyond “painful periods”?
What exactly is endometriosis?
Endometriosis is a systemic inflammatory neuroendocrine disorder. That means it is not only a “period problem.” It is a whole-body condition that can affect organs and systems from the pelvic area outward. Pain is a major feature, but it is not the only way endometriosis shows up.
One of the most important ideas we want you to carry is that you cannot reduce endometriosis to one symptom, like painful periods, and stop there. We have to address the person as a whole.
How common is it?
Endometriosis affects about 10 percent of women based on the literature, but Dr. A believes it is likely higher, often above 20 percent, because many people are never diagnosed. In this country, it takes roughly 9 to 11 years for most patients to receive a diagnosis. Many people are undiagnosed for the majority of their reproductive lives.
That delay often has an age pattern, too. A lot of patients are average around 32, when pregnancy is a goal, or when symptoms have been bouncing from doctor to doctor for years, until someone finally validates them.
Can it be diagnosed with a blood test or an ultrasound?
Endometriosis does not currently have a reliable blood test. And while clinicians may use ultrasound, an ultrasound cannot diagnose endometriosis in most cases unless there is a specific ovarian finding.
Dr. A explains that accurate diagnosis is often rooted in listening carefully to a patient. When a clinician knows what patterns to look for, that approach can reach high accuracy, often quoted at around 85 to 90 percent.

So if you are getting appointments where your pain is minimized, dismissed, or treated like it is “just anxiety,” that is not just frustrating. It directly contributes to the long diagnostic delays that affect quality of life and fertility planning.
Key symptoms you should not ignore.
What are the most common symptoms of endometriosis?
When you think about endometriosis, think pain. But pain can appear in many places and in many forms. The most common symptoms include:
- Painful periods
- Painful urination and bladder-like symptoms (often described as “recurrent bladder infections”)
- Painful sex, especially with deep penetration
- Painful bowel movements
- Back pain and chronic pelvic pain
- Bloating
- Recurrent pelvic pain that can become chronic
Dr. A also points out a specific clinical mismatch that many people experience. Some patients are labeled as having bladder infections, but urine cultures come back negative. The symptoms still feel real and intense, but the diagnosis is often wrong.
Why do so many people get told they have IBS, SIBO, or other GI conditions?
Because bloating and GI symptoms can happen even when it is not your period. Many endometriosis patients are diagnosed with:
- IBS (irritable bowel syndrome)
- SIBO (small intestinal bacterial overgrowth)
And some end up undergoing endoscopies or colonoscopies when a GI pattern seems dominant. Dr. A describes this common pathway: the pelvic inflammation is not addressed, so the patient bounces between gastroenterology and gynecology without the “main driver” being treated.
One key red flag pattern Dr. A emphasizes is when symptoms lead you to change your life around your cycle. If you plan trips around your period because pain is predictable and disruptive, that is not “just a bad month.” It may be endometriosis until proven otherwise.

Is painful sex with deep penetration a real endometriosis symptom?
Yes. Dr. A explains that endometriosis implants can be positioned in places that make certain movements painful. One of the most common areas is behind the cervix, often related to the uterosacral ligaments. When the tissue is compressed or stretched, nerve fibers attached to or involved with the implants can trigger sharp pain.
Different implant locations can create different symptom “signatures.” Some people experience painful sex, others experience bladder pain, and others feel bowel-movement pain or even stabbing pain that can travel down the legs.
Stages of endometriosis: why stage does not equal pain
How do stages of endometriosis work?
There are four surgical stages: minimum, mild, moderate, and severe. But here is the part that surprises people again and again:
Stage does not reliably predict pain severity.
Dr. A says you cannot conclude, for example, that someone with stage one must have minimal symptoms or that someone with stage four must have extreme pain. Pain perception is influenced by more than visible lesions. Central sensitization can amplify how the nervous system perceives pain over time.
Also, surgical staging depends on who is doing the procedure. Dr. A highlights the importance of an experienced endometriosis surgeon who can identify and assess the disease accurately, since staging requires careful excision and visualization.
What causes endometriosis?
Why does endometriosis happen in the first place?
We still do not fully understand every mechanism. But Dr. A offers a framework that makes the condition easier to conceptualize.
Endometriosis involves tissue similar to the lining of the uterus found outside the uterus. Those ectopic implants can be located in the pelvis, on organs like the bladder or bowel, and sometimes even higher in the abdomen, such as near the diaphragm.
When implants behave like endometrial tissue, they respond to hormones and drive inflammation. Dr. A references the hypothesis of retrograde menstruation, meaning some cells move backward through the fallopian tubes during menstrual flow and implant in areas where they should not be.
In people with a normal immune response, the immune system often clears these cells. In endometriosis, Dr. A explains, the immune system behaves differently, allowing implants to persist and establish inflammation.
What hormones and inflammation do to endometriosis implants
Endometriosis is described as estrogen-dominant, progesterone-resistant, and highly inflammatory. Dr. A explains that implants can express aromatase, an enzyme that contributes to estrogen production. Implants can therefore become less dependent on the normal estrogen cycle and grow while resisting progesterone’s suppressive effects.
Over time, implants can recruit blood vessels and nerves, invade adjacent tissue, and drive scarring.
How endometriosis can affect fertility and other organs
Can endometriosis “spread”?
In the way people often mean “spread” for cancer, no. Endometriosis is not cancer. But it does progress over time, adding more implant activity month after month.
Dr. A describes how unchecked inflammation and implants can lead to:
- Scarring in the pelvis
- Blockage of fallopian tubes
- Endometriomas (ovarian “chocolate cysts”)
- Damage to ovarian reserve and possibly egg quality
- Ureter involvement, if advanced, which can block urine drainage and cause flank pain
- Bowel adhesions and even bowel obstruction in severe cases
Those “years of dismissal” can matter because implants do not stop. They can keep recruiting inflammation and scarring pathways.
Pain, nerves, and why even a small disease can feel extreme
How can someone with “mild” endometriosis have intense pain?
This is where central sensitization enters the picture. Dr. A describes a process where chronic inflammation causes nerve fibers to grow within implants. These implants can then hijack the pain system.
Over time, the brain and spine can “rewire” so that what would normally be mild pain becomes magnified. Dr. A gives a simple analogy: if a signal might be a two out of ten pain, central sensitization can make it feel like a ten out of ten.
That helps explain why stage does not equal symptom severity and why some patients with only a few visible nodules still experience emergency-level pain.
Why endometriosis can mimic GI problems and “leaky gut” patterns
Is there a connection between endometriosis and IBS-like symptoms?
Dr. A says yes, and she frames it as a common overlap. In her opinion, about 90 percent of patients with endometriosis have some form of “leaky gut” or IBS-like pattern.
The pathway is described like this: intestinal lining changes, increased permeability, and shifts in bacteria can let substances that should not cross the gut barrier absorb into the body. That triggers inflammation.
Symptoms that show up with this overlap may include:
- Bloating even when not on your period
- Fatigue
- Weight gain tied to insulin resistance
- Brain fog
- Anxiety and depression feelings
- Feeling “not well” consistently
Dr. A ties this back to the nervous system, too. Chronic pelvic pain plus inflammatory GI symptoms can impact the limbic system and prefrontal brain pathways that regulate emotional experience and stress response.
We are not saying everyone will have every symptom, and we are not saying the GI symptoms automatically mean endometriosis. But when endometriosis is the underlying cause, treating only the gut symptoms can leave the main driver untouched.
How endometriosis impacts mental health, not just physical pain
Why do so many people with endometriosis feel anxious, depressed, or foggy?
Because endometriosis is not “only” pelvic pain. Dr. A emphasizes that chronic inflammation plus pain cycling can influence brain health and emotional regulation.
She describes endometriosis as estrogen-dominant, progesterone-resistant, and inflammatory. That hormonal pattern and inflammatory load can contribute to mood changes, irritability, sadness, concentration problems, and memory challenges.
So yes, the mental health effects are real, and they are not the same as “it is all in your head.” Many patients get dismissed when their pain is present, but then their mental health symptoms are dismissed, too.
Dr. A’s core message is that if you are dealing with this, you deserve full evaluation and full treatment, not symptom-by-symptom shrinking.
How do we treat endometriosis?
What is the “gold standard” endometriosis treatment?
Dr. A’s gold standard approach is laparoscopic excision for endometriosis, when appropriate. Laparoscopy is minimally invasive and uses small instruments and camera visualization. The principle is to resect implants, meaning to remove them.
Dr. A specifically warns against relying on ablation or burning endometriosis tissue. Her reasoning is that ablation can kill only superficial layers, while endometriosis can infiltrate deeper tissue. If deeper tissue is not removed, symptoms may return.
Why do some surgeries fail even when endometriosis was “found”?
Because many gynecologists are not trained to manage advanced endometriosis, and because lesions can be tiny. Dr. A describes endometriosis lesions as small but “deadly,” and emphasizes that surgeons must search systematically and remove what they find.
She also notes that microscopic disease exists, so perfect removal is not always possible. But leaving visible disease behind reduces the chance of lasting relief.
What does a surgeon actually look for during laparoscopy?
Dr. A describes the lesion’s appearance and location. Easy-to-see lesions can look purplish. She also emphasizes the importance of using uterine manipulators so the surgeon can lift the uterus and inspect common implant sites.
Implants may be located behind the uterus and on uterosacral ligaments, on the bladder, on pelvic sidewalls where ureters run, and in other areas, depending on disease pattern.
In advanced cases, the surgeon may have to dissect the ureters carefully. Dr. A provides the practical definition: the ureter drains urine from the kidneys to the bladder. If blocked, patients can experience flank pain and kidney urine accumulation.
What is stromal endometriosis, and why do surgeons miss it?
Dr. A explains that a subtype called stromal endometriosis can be challenging to spot because it lacks glandular features and may not have the typical purplish appearance. It can appear more like clear superficial ulcers or white, delicate tissue.
It is tiny and subtle, so without close inspection, surgeons can miss it. Dr. A says most doctors will miss it unless they know exactly what it looks like and look for it intentionally.
Hormonal treatment and suppression: why progesterone matters
If implants are estrogen-dominant, why not just block estrogen?
Dr. A frames it as: you can either give progesterone or pull estrogen away. Implants grow with estrogen and can have their growth suppressed with progesterone, even though they can be progesterone-resistant.
Her practical approach is to consider progesterone-based strategies early, especially as first-line therapy for many patients.
What progesterone options are used?
Dr. A discusses progestin therapies, including:
- Progestin IUDs (examples mentioned include Mirena, Kyleena, Liletta)
- Low-dose birth control pills
- Progestin-only pills (Dr. A mentions a progestin she commonly uses)
Her “first line” in practice is often a progestin IUD, especially when a patient can use it. She particularly likes Kyleena for patients who have not had children and prefers Mirena for patients who have had children or for higher disease needs.
She also recommends giving it time, often about three to four months, to assess whether symptoms improve meaningfully.
What if symptoms do not improve after a progestin IUD or pills?
Then Dr. A suggests considering either laparoscopic excision and resection, or moving to medications that lower estrogen production. These are described as GnRH antagonists, with examples mentioned as Orilissa and Myfembry.
Possible side effects can include hot flashes, night sweats, nausea, and some mood changes. Dr. A highlights a safety frame: use can be up to two years, with bone loss reversibility considerations.
Endometriosis and fertility: egg reserve, AMH, and timing conversations
How does endometriosis affect ovarian reserve?
Endometriosis can affect ovarian reserve, especially in the presence of endometriomas (chocolate cysts). These cysts can gradually destroy egg count over time and may affect egg quality.
Dr. A also emphasizes that surgery itself can be a factor. She notes she avoids burning on the ovary to reduce further impact on reserve.
What should patients know about AMH testing?
Dr. A checks AMH, anti-malarial hormone. This is not a test of fertility itself. It is a predictor of ovarian reserve. A low AMH does not mean someone cannot have children, but it can be a signal that reserve may be low and action may be needed sooner.
If possible, she advises egg freezing when the reserve is low or when the disease is advanced, particularly to prevent waiting until later ages when the reserve may drop further.
When should fertility conversations happen?
She argues they should happen early, even when a couple is not planning pregnancy immediately. Dr. A describes the scenario she sees often: a wife diagnosed in her late 20s with endometriosis and a very low egg reserve, and then later reaching age 35 with shock.
She recommends having a proactive conversation about whether it makes sense to:
- Act sooner with fertility preservation
- Proceed with surgery and suppression strategies
- Try for pregnancy earlier than planned
This is also relevant for teenagers. Dr. A describes seeing very young patients with advanced disease and low reserve, even including cases as young as 16, where egg freezing becomes part of the stabilization plan.
Why removing endometriosis can help with pregnancy
How does excision improve fertility?
Dr. A explains that removing endometriosis can reduce inflammation. Inflammation is a “toxic environment” for implantation, and by excising implants and addressing scarring or blocked tubes, the reproductive environment can become more favorable.
She also mentions flushing and assessing tubes during surgery, and evaluating the uterine cavity for other contributing diagnoses.
A sister condition: adenomyosis
What is adenomyosis, and how does it relate to endometriosis?
Adenomyosis is described as a sister diagnosis often found with endometriosis. It involves endometrial-like cells within the uterine muscle wall, leading to inflammation and painful, heavy periods.
Dr. A notes that adenomyosis can increase miscarriage risk. That added risk ties back to inflammation and estrogen dominance, affecting implantation and the overall environment for pregnancy.
For adenomyosis, she often uses progestin IUD strategies as part of management.

What happens in perimenopause and menopause?
Does endometriosis get better after menopause?
After menopause, symptoms often diminish because the ovaries stop secreting estrogen. Many experience improved pain.
But Dr. A highlights a crucial nuance: if someone had years of dismissed symptoms, the scarring and leaky gut patterns may remain. So while estrogen drops, not all downstream effects disappear automatically.
Why can symptoms still feel intense during perimenopause?
Perimenopause is a time of hormonal fluctuation. Dr. A explains that patients may experience brain fog, hot flashes, night sweats, anxiety, depression, hair loss, skin thinning, and sleep disruption. Those changes overlap with symptoms that people with endometriosis already struggle with.
How does hormone replacement therapy affect endometriosis?
Dr. A stresses that hormone replacement therapy can potentially stimulate endometriosis tissues outside the uterus, even in people who do not have a uterus. In fact, she emphasizes that some doctors wrongly tell patients they do not need progesterone if the uterus has been removed.
Her view: progesterone may still be important to block unopposed estrogen effects on endometriosis implants.
Tamoxifen and estrogen signaling: a special warning
What does tamoxifen have to do with endometriosis?
Dr. A discusses an important overlooked connection. Tamoxifen is an estrogen blocker in breast tissue, but it can stimulate the endometrial lining in the uterus. Because endometriosis tissue resembles the uterine lining, tamoxifen may stimulate endometriosis implants too.
She shared the case of a patient with a history of breast cancer who had estrogen suppressed, yet later developed pelvic pain and endometriomas after years on tamoxifen. The key takeaway: patients with a history of endometriosis should inform their doctors if they need tamoxifen so appropriate monitoring can happen.
How to choose a surgeon who can actually help
Can endometriosis be treated if you do not have an OB-GYN nearby?
Access can be a real barrier. Dr. A notes that 50 percent of counties in the country do not have an OB-GYN. So the practical response is to travel if you need to.
When you suspect endometriosis, prioritize meeting an endometriosis specialist rather than settling for a surgeon who does not routinely manage endometriosis cases.
What criteria should patients look for?
Dr. A’s criteria are straightforward and experience-based:
- Find an endometriosis specialist who is minimally invasive surgery trained
- Ask how many endometriosis excision/resection surgeries they do
- Ask if they routinely operate on endometriosis specifically
- Do not accept “we found nothing” or “it was nothing” without re-evaluating if symptoms remain severe
She also encourages research. If you have to travel, travel. You are already going to go through surgery. The last thing you want is surgery with someone who has not done it enough to find and remove the subtle lesions.

Rapid answers to common endometriosis questions
What are the main symptoms?
The most common symptoms revolve around pain: painful periods, bladder symptoms like painful urination, painful sex with deep penetration, painful bowel movements, back pain, chronic pelvic pain, and bloating. Over time, pain can become chronic and show up outside the cycle.
Can you have endometriosis without heavy periods?
Absolutely. You can have endometriosis even if bleeding patterns are not heavy. Pain patterns can start days before a period and extend after. With inflammation progression and central sensitization, pain can persist throughout the month.
Why does it hurt when I pee or poop?
Often, it is related to where implants sit or how adhesions affect nearby organs. Dr. A describes endometriosis implants on the bladder, causing bladder-type symptoms. She also notes rectal or bowel involvement can cause pain during bowel movements.
Does endometriosis cause IBS-like symptoms?
Yes. Some patients are diagnosed with IBS or SIBO. But if the underlying driver is endometriosis, treating the gut symptoms alone may not fully help.
Why didn’t my ultrasound show anything?
Endometriosis implants can be very small, measured in millimeters. Some are deep infiltrating, some are tiny superficial ulcers, and some are subtle. Routine ultrasound may miss them unless certain patterns are present.
Dr. A also points to what can be seen on ultrasound in some cases:
- Adenomyosis signs in young patients
- Pelvic free fluid
- Endometriomas (chocolate cysts)
- “Kissing ovaries” in advanced cases with adhesions posterior to the uterus
Can endometriosis “spread”?
Endometriosis does not spread like cancer, but it progresses. Implants can continue adding more disease activity over time.
FAQs
Does painful period pain automatically indicate endometriosis?
No. Painful periods can come from many causes. But painful periods that disrupt life, come with bladder or bowel symptoms, and follow a menstrual-cycle pattern deserve evaluation for endometriosis.
How long does it usually take to get diagnosed?
Dr. A notes that in the US, it can take 9 to 11 years for many patients to get a diagnosis.
Why don’t ultrasounds show endometriosis?
Because many implants are only a few millimeters and can be deep or subtle. Ultrasound may only detect certain findings, like endometriomas, adenomyosis patterns, free fluid, or signs of advanced adhesions.
Does the surgical stage predict how much it will hurt?
Not reliably. Central sensitization can make pain severe even with a small number of implants, and the amount of visible disease does not always match symptom intensity.
What is the difference between excision and ablation?
Excision means removing implants. Ablation means burning or destroying tissue. Dr. A cautions that ablation may destroy superficial layers while leaving deeper infiltrating disease, which can lead to symptom recurrence.
What should I ask a surgeon during a consultation?
Ask whether they routinely operate on endometriosis, how many procedures they do, and whether they perform resections and carefully search for subtle lesions.
Should fertility preservation be discussed with endometriosis?
Often, yes. Dr. A recommends checking ovarian reserve with AMH and having early conversations about egg freezing or earlier pregnancy attempts when reserve is low, or disease is advanced.
Takeaway: advocate for pain that changes your life
We keep returning to the simplest red flag: if you sit on that exam table and you complain of pain, that pain should be taken seriously. If you end up in urgent care or the emergency room on your period, that is another major sign. And if your pain forces you to change your calendar, that pattern should be treated as a meaningful medical clue.
Endometriosis is misunderstood, underdiagnosed, and often complicated by overlap with IBS-like symptoms, bladder pain, and mental health challenges. But it is also treatable. Many patients improve when their care plan addresses the real biology: removing implants when appropriate, suppressing hormonal drivers, and, when needed, protecting fertility through early ovarian reserve assessment.
If we could give one instruction that protects your time and your life, keep seeking evaluation until you have answers that fit your symptoms. Painful periods are not normal, and you deserve care that does not dismiss you.
Concerned About Your Health? Talk to Dr. Aliabadi
Dr. Aliabadi is an expert OB/GYN who is knowledgeable in all aspects of women’s health and well-being. Dr. Aliabadi and her caring, supportive staff are available to support you through PCOS, endometriosis, menopause, childbirth, infertility, or routine gynecological care. We invite you to establish care with Dr. Aliabadi. Call us at (844) 863-6700 or

This article was created from the video Ask Dr. A: Painful Periods are Not Normal! Endometriosis Deep Dive | SHE MD for Dr. Thais Aliabadi’s website.