Getting diagnosed with endometriosis can take years, even when the symptoms are severe and start young. Endometriosis advocate Zoe Armstrong spent nearly two decades moving through pain that was dismissed as "being dramatic" before she finally got answers, and she has since built a care team that includes pelvic floor physical therapy.
In this conversation, Zoe talks through what it was like to live with undiagnosed symptoms, how pelvic floor therapy has supported her both before and after endometriosis excision surgery, and the everyday tools that have helped her manage pain along the way.
An endometriosis advocate is anyone who takes time to help spread awareness and help others understand the disease better. It doesn't have to mean a big public title. It can be as simple as advocating for yourself in a doctor's appointment, or helping family, friends, or coworkers understand what you and other patients experience day to day.
Zoe's own advocacy takes many forms. She visits public middle and high schools in New York City to teach students about endometriosis symptoms and how to speak up for themselves in medical appointments. She also talks with strangers on her daily commute, sharing information and materials. She estimates she's spoken with over 750 New Yorkers in four months, and says the vast majority have been receptive, either recognizing the disease themselves, knowing someone affected by it, or wanting to learn more.
She sees this kind of everyday advocacy as especially important given how often the disease is dismissed or misunderstood, both by patients and the people around them.
Zoe says she started showing clear endometriosis symptoms with her first period at age 11, including pain severe enough that a school nurse asked whether her appendix had been removed. Over the years she also experienced monthly loss of sensation in one leg (something she later connected to her cycle), frequent nausea severe enough that she carried a bag on her commute, and two ruptured ovarian cysts, one at age 15 and another in her mid-20s. Each time, she says she was told she was being dramatic and was sent home without a referral back to her OBGYN.
It wasn't until an ultrasound about two years before this recording, at age 29, that she was diagnosed with an endometrioma, which she was told is indicative of stage III or IV endometriosis. She says the diagnostic delay for endometriosis in the United States is commonly cited as seven to ten years; hers took about 18 years. She also points out that access is a major factor, since many women don't live within two hours of an OBGYN.
For Zoe, pelvic floor therapy has helped physically and mentally. She says it helped her understand her own body, moving from feeling disconnected from unexplained internal pain to being able to pinpoint where pain is coming from, get internal work done to release it, and feel real relief, sometimes lasting up to six days after a session.
Her physical therapist notes that breathing exercises are often a favorite starting point because they're low effort: a deep inhale into the belly and ribcage can send air down toward the pelvic floor and help it release. Core work matters too, but it's described as a more advanced step, since activating the core can sometimes cause the pelvic floor to over-activate along with it. Learning to engage the core without over-engaging the pelvic floor is described as an important part of recovery.
Zoe describes her first internal exam as something she was mentally and physically unprepared for, even having had a prior internal exam elsewhere. What made a difference for her was a provider who explained what was happening at every step and who, let Zoe proceed at her own pace.
Internal exams are optional, not required, and sessions can focus entirely on external work instead, such as releasing tension in the stomach, hips, or lower back. Zoe's therapist emphasizes that not offering internal work as an option can be a disservice to patients, since the pelvic floor muscles often refer pain into the same areas associated with endometriosis. She recommends choosing a pelvic floor therapist the way you'd choose a mental health therapist: having a conversation first and finding someone who feels like a safe fit.
Zoe didn't fully appreciate the value of seeing a pelvic floor PT before surgery until after the fact. Having a baseline understanding of her body pre-op meant that post-op, her therapist could help validate the physical changes she was feeling, like having more internal movement and room after her organs were untethered during surgery.
In the early weeks after surgery, around four weeks post-op in Zoe's case, sessions focused on checking how scars were healing rather than internal work, including light touch massage around (not directly on) the scar area. Her therapist notes that excision surgery recovery is generally described as about six months internally and externally, and that a full cycle can take six months to a few years to regulate. Scar tissue mobilization, light massage, and specific at-home tools were part of that longer recovery process.
Her therapist also points out that pain that continues after surgery doesn't necessarily mean the surgery failed. The pelvic floor muscles themselves can become tight from the surgery, since excision involves operating around nearly every pelvic organ, and that tightness can be a separate, treatable source of pain.
About eight or nine months after her excision surgery, Zoe was still having a hard pulling pain she couldn't quite describe. Her physical therapist referred her to a pelvic pain specialist, who eventually asked whether it felt like a bubble pushing against her, which matched what Zoe was feeling. She was diagnosed with a hernia and had repair surgery within about two months.
A hernia happens when there's an infiltration from the inner abdominal wall pushing out through the abdominal wall, and it can be very painful, especially when it involves nerves. Zoe's symptoms included pain during Pilates and core work, and pain when her bladder was full that eased right after urinating. Her therapist notes hernias can be small but very painful, or the reverse, and that pain tied to bladder filling, bowel movements, or any abdominal pressure is worth mentioning to a doctor, since it can be a sign of a hernia rather than endometriosis returning.
Zoe mentions a few tools she keeps on hand:
These tools are described as ways to support, not replace, work done with a pelvic floor physical therapist.
Based on this conversation, it's worth talking to a doctor if you experience:
How long does it typically take to get diagnosed with endometriosis?
It's commonly cited as seven to ten years in the United States, though it can be much longer. Zoe Armstrong's own diagnosis took about 18 years from her first symptoms.
Can pelvic floor therapy help before endometriosis excision surgery, not just after?
Yes. Seeing a pelvic floor therapist before surgery can help establish a baseline for how your body feels, which can make it easier to track and understand changes during recovery afterward.
Why might pain continue after excision surgery?
It doesn't necessarily mean the surgery failed. Possible contributors mentioned include scar tissue, a pelvic floor that's become tight from the surgery itself, or an unrelated issue like a hernia.
What at-home tools are mentioned for symptom relief?
Silicone cupping, castor oil packs, and a pelvic wand are each discussed as tools used alongside, not instead of, professional care.
Is an internal exam required for pelvic floor therapy?
No. Internal exams are optional and should always involve the provider asking for consent, every session. Sessions can focus on external work instead.
This article draws on insights from a conversation on Unlock Your Body with Dr. Emma Codman. Listen to the full episode below for the complete discussion and additional context.
No amount of urinary leakage, pelvic pain, or endometriosis symptoms should be written off as normal, no matter your age or what's causing them. Zoe Armstrong's 18-year path to diagnosis shows how much time is lost when symptoms are dismissed, but it also points to a way forward: an integrated care team, including pelvic floor physical therapy before and after surgery, honest conversations about consent and comfort, and the willingness to keep asking questions, whether of your doctor or of a stranger on the subway, until you get real answers.