Endometriosis is one of the most common, and most misunderstood, causes of pelvic pain in women. The World Health Organization estimates that 25 to 50% of women struggling with infertility have the condition, yet it often goes undiagnosed for years because painful periods get written off as normal. This article breaks down what endometriosis actually is, how it shows up in daily life, how doctors diagnose it now, and what treatment can look like, including some of what one pelvic floor physical therapist learned through her own diagnosis.
Endometriosis happens when tissue similar to the tissue inside the uterus grows outside of it. This tissue can turn up almost anywhere in the body: on the bowels, the bladder, the pelvic walls, and there have even been reports of it on the lungs and in the brain.
That tissue causes inflammation, which is where most of the symptoms come from. While painful periods are the symptom most people associate with endometriosis, it can also cause bowel dysfunction, bladder dysfunction, and sexual dysfunction. There's growing conversation in the field about treating endometriosis less as a purely gynecological issue and more as an inflammatory condition, though this is still an evolving area of research.
Symptoms vary a lot from person to person. Some of what's discussed includes:
A recurring theme is how often women downplay their own pain. It's common to hear something like needing two days a month in bed with a heating pad, avoiding plans, and just "muscling through." Added up over a year, that's close to a full month spent in pain.
Cramps that require medicine like Advil or Tylenol around the clock, or that make you change your plans, are described as a possible warning sign of endometriosis, not just "bad luck" with periods. The larger point raised is that women's pain has been normalized for too long, and that it's worth advocating for yourself rather than assuming severe pain is simply something to push through.
Diagnosis used to require surgery, specifically exploratory or excision surgery, where a surgeon looks for the tissue directly and takes biopsies to confirm it. That's changed: current guidelines allow diagnosis based on symptoms (the bowel, bladder, period, and sexual dysfunction symptoms described above), without needing surgery first. Surgery can still be used afterward to confirm a suspected diagnosis.
The diagnostic path typically discussed includes:
Because endometriosis isn't covered extensively in medical school, patients may need to bring information to their doctor and ask directly for imaging or referrals.
It's also worth noting that how much is visible on imaging doesn't necessarily predict how much disease is found in surgery. Some patients with clean imaging still have significant disease when a surgeon looks directly.
Treatment options generally range from less invasive to more invasive:
Newer areas of research mentioned, but still in early stages, include looking at GLP-1 levels and a drug called metformin for their potential role in reducing inflammation or lesion size. Neither is an established treatment yet.
Surgery length and extent depend on how widespread the lesions are. Some cases are quicker if lesions are more superficial, while others can take several hours if the disease is more extensive. Surgeons go in through small incisions using laparoscopic or robotic tools, look for lesions throughout the pelvis (and sometimes beyond), and remove them along with anything suspicious, sending samples to a lab for confirmation.
Recovery can mean anything from going home the same day to staying in the hospital a few days, depending on severity. Scars from the small incisions are generally described as fading significantly over time, though sunscreen and dermatologist guidance can help with the healing process in the sun.
Many people feel some relief after excision surgery, but that relief isn't guaranteed to be immediate or permanent, and that doesn't necessarily mean the lesions have grown back. Ongoing pelvic floor dysfunction or general inflammation can still cause symptoms afterward, since endometriosis is increasingly viewed as an inflammatory condition rather than something a single procedure fully resolves.
Because of that, continuing pelvic floor PT after surgery, along with an anti-inflammatory diet (which may mean reducing gluten, dairy, soy, or red meat depending on individual sensitivity), adequate sleep, and a lower-stress lifestyle, is described as part of ongoing management rather than optional extras. Experiences here vary a lot. Some people feel great after surgery and move on, while others continue working through lingering symptoms with additional support.
Work. Accommodations are often available, especially at larger companies through HR, things like a standing desk, a cushion, or a flexible or work-from-home schedule during flare-ups. At the same time, research does show endometriosis can limit career opportunities when symptoms interfere with attendance and performance, which remains an area needing more support.
Exercise. Lower-impact exercise is generally recommended, since high-impact activity can be more inflammatory for some people. If you want to do something higher-impact like HIIT or running, pairing it with recovery steps (like an Epsom salt bath and anti-inflammatory food choices) is suggested. After surgery, starting with gentle yoga or Pilates and building up gradually is a common recommendation.
Dating. Being open with a partner about having endometriosis, even if not on the first date, is generally worthwhile, since a supportive partner's reaction can be a useful signal about the relationship.
Mental health. Speaking with a therapist, or at least with trusted friends and family, is recommended. People are often more receptive and supportive than expected.
Consider seeking evaluation if you experience persistent pelvic, bladder, or bowel pain that doesn't fit typical explanations, period pain severe enough to require regular medication or change your plans, or symptoms that haven't improved with standard treatments for conditions like IBS. If bowel, bladder, or sexual dysfunction symptoms don't make sense or aren't responding to usual treatment, that's also mentioned as a reason to consider a referral to an endometriosis specialist.
What is endometriosis, in simple terms?
It's tissue similar to the lining of the uterus growing outside the uterus, on the bowels, bladder, pelvic walls, or elsewhere, which causes inflammation and a range of symptoms.
Is it normal to have severe period pain?
Pain severe enough to need regular medication or to change your plans is described as a possible warning sign, not something to consider "normal" or just push through.
Do you need surgery to be diagnosed with endometriosis?
No. Current guidelines allow diagnosis based on symptoms alone. Surgery can be used afterward to confirm a suspected diagnosis.
Does the amount of lesions found in surgery match how much pain someone feels?
Not necessarily. Some people with very few lesions have significant pain, while others with more extensive disease have less pain.
Will surgery cure endometriosis?
Surgery removes existing lesions, but it isn't described as a guaranteed permanent fix. Lesions can potentially return, and ongoing management (like PT and anti-inflammatory habits) is often recommended alongside it.
What treatment options exist besides surgery?
Hormonal birth control, pelvic floor physical therapy, trigger point or Botox injections, nerve pain medications, and acupuncture are all mentioned as options that can help manage symptoms, though they don't stop lesion growth the way surgery can.
This article draws on insights from a conversation on Unlock Your Body. Listen to the full episode below for the complete discussion and additional context.
Endometriosis is often dismissed or normalized for far too long, but the path to answers has gotten shorter: diagnosis no longer requires surgery, and there's a real range of treatment options depending on where someone is in their life and how ready they feel. The most important message may be this: painful periods that disrupt your life aren't something to just push through, and trusting that instinct enough to advocate for yourself is often the first real step forward.