A movement inspired by the book “All Tied Up”
Turning pain into purpose. Transforming awareness into action.
Millions of people live with abdominal adhesions after surgery — chronic pain, repeated procedures, and years of being told “everything looks normal.” The National Adhesion Alliance exists so no one navigates this disease alone.
We're dedicated to improving the lives of people affected by abdominal adhesions through education, advocacy, research, and compassionate support — and to building specialized Adhesion Centers of Excellence where no one is dismissed or misdiagnosed.
All Tied Up
The book that started this movement — one patient's account of chronic pain, misdiagnosis, and the long search for answers. Now becoming a documentary of the same name.
Get the book →A portion of every sale goes directly toward building and growing the Alliance and our marketing and awareness initiatives — including this documentary.
Our story, and yours
One book. One documentary. A community that refuses to stay unseen.
All Tied Up began as one story of living with abdominal adhesions. It's becoming a documentary of the same name — built from the voices of patients, surgeons, pain specialists, researchers, and the families who've lived alongside this disease.
Abdominal adhesions affect millions of people after surgery, yet they remain one of the least understood, least publicly discussed chronic conditions in medicine. We believe the people who've lived it are the ones best equipped to change that — through their stories, their data, and their voices in front of the camera.
Want to be part of the film? Patients, caregivers, surgeons, and researchers can all sign up below to be considered for interviews, footage, or an on-camera role in All Tied Up, the documentary.
Heaven Gilmore
Founder, National Adhesion Alliance
Licensed Financial Professional & Certified Long Term Care Specialist & Author
- Media & financial executive, 25+ years across both industries
- Publisher and distributor, partnered with major media companies
- Owner, HeritageBridge Financial Solutions — an insurance brokerage agency
- Author, All Tied Up
Why this movement exists
Heaven Gilmore built two careers — one in media, one in finance — before abdominal adhesions gave her a third: advocate.
For 25 years, Heaven has worked as a media and financial executive, publishing and distributing content in partnership with major media companies while also owning and running HeritageBridge Financial Solutions, an insurance brokerage agency. Her mission with the National Adhesion Alliance is twofold: first, to help people understand, cope with, and find real resources for both their health and financial questions — the two systems patients are so often left to navigate alone.
The second part of that mission is personal. Heaven lives with abdominal adhesions herself.
"We can no longer accept 'scar tissue is normal and doesn't hurt.' We must demand research, respect, resolve."
— Heaven Gilmore, FounderThe line we're done accepting
"Scar tissue is normal. It doesn't hurt." Not anymore. We will
We reject that statement outright. It causes unimaginable grief. For many people living with abdominal adhesions, this isn't just pain — it's dislocated organs. Nothing capable of that kind of force should ever be waved away as normal.
The facts behind the fight
Frequently asked questions
Every answer below is sourced — from medical organizations, patient education services, and adhesion treatment specialists — so you and your doctor can go straight to the original.
What exactly is an abdominal adhesion?
An adhesion is a band of internal scar tissue that joins two surfaces inside the body that are normally separate — for example, a loop of bowel sticking to the abdominal wall. Adhesions can be thin, film-like layers or thick, rope-like bands.
Source: Better Health Channel, Victoria Department of Health
What causes adhesions to form?
Adhesions form as the body's normal repair response to tissue disturbance — most often triggered by surgery, but also by infection, physical trauma, or radiation therapy.
Source: Better Health Channel, Victoria Department of Health
How common are surgical adhesions, really?
Far more common than most people realize. Up to 93% of people who have abdominal surgery go on to develop adhesions. Data compiled by the American College of Surgeons breaks it down further: roughly 90% after open abdominal surgery, 66% after gastrointestinal surgery, 51% after gynecologic or obstetric surgery, and 22% after urologic surgery.
Sources: Better Health Channel and American College of Surgeons
Can you get adhesions without ever having surgery?
Yes. About 1 in 10 people with abdominal adhesions never had abdominal surgery at all — infection or inflammation alone can trigger them.
Source: Better Health Channel, Victoria Department of Health
What parts of the body do adhesions affect?
Adhesions tend to attach the digestive, reproductive, and endocrine organs throughout the abdomen and pelvis. Beyond that region, adhesions can also involve the female reproductive organs specifically, the bowel, the area around the heart, the spine, and the hand.
Sources: Clear Passage and Better Health Channel
If it's "just scar tissue," why does it hurt so much?
Because of the physical force involved. Clear Passage describes adhesions as acting like glue, binding organs and structures into straitjacket-like bonds with a strength estimated at nearly 2,000 pounds per square inch. When an adhesion wraps around a nerve, or restricts an organ's normal movement, it can cause serious pain and a real loss of mobility — a very different picture than being told scar tissue simply "doesn't hurt."
Source: Clear Passage, "Large Bowel Adhesions: Causes and Treatments"
What health problems can adhesions actually cause?
Depending on where they form, adhesions can contribute to infertility, painful intercourse, chronic pelvic pain, and bowel obstruction — and in more complex cases, a broader condition known as adhesion-related disorder (ARD).
Source: Better Health Channel, Victoria Department of Health
Does surgery to remove adhesions fix the problem for good?
Not usually. Surgery to remove adhesions (called adhesiolysis) causes new adhesions to form again in an estimated 70% of cases — part of why so many patients cycle through repeat procedures instead of finding lasting relief.
Source: Better Health Channel, Victoria Department of Health
Why do adhesions get missed or misdiagnosed so often?
Adhesions typically don't show up on standard imaging like ultrasound or CT scans, so they're often only confirmed during surgery itself. In the meantime, patients frequently get passed from specialist to specialist while their pain goes unexplained — or dismissed.
Source: Clear Passage
Is the medical field actually doing anything about this?
It's starting to. The American College of Surgeons launched a Surgical Adhesions Improvement Project, convening international experts to study adhesion prevention and treatment after decades of the issue being overlooked. By the College's estimate, adhesions drive nearly 300,000 additional surgeries and $2.3 billion in costs every year in the U.S. alone — the scale of evidence we're building on with our own patient registry.
Source: American College of Surgeons
This information is provided for education and awareness, not as medical advice. Always talk with your doctor about your own symptoms, diagnosis, and treatment options.
Our four pillars
Real change requires more than support alone. Everything we build — our website, our nonprofit, the documentary, and every future program — stands on these four foundations.
A voice in every room that decides your care
Raising public awareness, engaging legislators, and pushing for specialized Adhesion Centers of Excellence so every patient is seen and treated with dignity.
Trusted information, for patients and physicians alike
Evidence-based education that leads to earlier diagnosis and more informed, confident healthcare decisions.
Data that moves medicine forward
A patient registry, physician collaboration, and advocacy for research funding that improves prevention, diagnosis, and treatment.
A community built on shared experience
A compassionate space where patients, caregivers, clinicians, and researchers unite to share, support, and create change together.
Working alongside, not instead of
A different angle on the same fight
Important work on abdominal adhesions is already happening — in surgical research, in clinical guidelines, in general digestive-health resources. We're not here to duplicate that work, and we're not here to compete with it. We're here because of what's still missing.
Nobody is systematically collecting the patient's own data, in the patient's own words — and that gap is exactly where we start.
- Patient-reported evidence. Every story we collect becomes real data — surgery counts, diagnosis delays, financial cost, and how often patients are told their pain isn't real. That's evidence researchers and clinicians want, and rarely have access to at scale.
- A story, not just a statistic. A founder who lives this, a book, and a documentary in production — built to make this disease impossible to look away from, not just cite in a journal.
- Health and money, together. Adhesions cost patients financially as much as physically — lost work, disability claims, insurance battles. Few resources address both sides of that at once.
If you're a researcher, clinician, or organization already doing work in this space, we want to build with you, not around you. Our registry, our story, and our audience are here to support that work — not replace it.
Partner with usHow this movement gets built
We're starting in Florida, building a model worth replicating, then taking it national — formalizing into a nonprofit once we have people behind us, not before.
Build the movement — first 90 days
- Name the organization and publish our mission
- Recruit a founding team from patients, healthcare, marketing, and law
- Collect the first patient stories through this page
- Start speaking publicly — podcast, book, local press, community groups
Make it official
- File Florida Articles of Incorporation with the Division of Corporations
- Obtain a federal EIN and apply for 501(c)(3) tax-exempt status
- Register for charitable solicitation before public fundraising
- Recruit a physician advisory board for credibility and clinical guidance
Grow the model
- Launch an annual Abdominal Adhesion Awareness Week
- Produce the All Tied Up documentary
- Open a national patient registry
- Advocate in Florida for a regional Adhesion Center of Excellence
Take it national
- Expand the ambassador program state by state
- Partner with existing digestive-disease and adhesion organizations
- Bring patient data to Congress and state legislatures
- Push for NIH research funding and clinical guidelines
Building toward 501(c)(3)
Want to help fund this fight?
We're not yet a registered nonprofit, so we're not accepting donations on this page — but we're getting there, and your support will matter most the moment we can put it to work.
Leave your email below and we'll reach out the day we're able to accept tax-deductible donations. In the meantime, buying All Tied Up is the most direct way to help — a portion of every sale already funds the Alliance and the documentary.
National Adhesion Alliance is currently in development. See our roadmap above for where things stand.
Get involved
Tell us who you are, and how you'd like to help. Every field marked required helps us follow up — everything else helps us build a fuller picture of this disease.
Join our treating doctor directory
If you treat patients with abdominal adhesions, this is how we connect you to them. Surgeons, gastroenterologists, gynecologists, colorectal surgeons, pain specialists, and researchers all add credibility to this work and help bridge the gap between patients and medicine.
- This directory is private. Your listing is never published publicly — we match you to patients directly, by location or by their ability to travel to you.
- Your answers below become a short bio we hand to matched patients, in your own words.
- You can also join our physician advisory board and help shape the patient registry.
Become an Adhesion Warrior
Our ambassador and volunteer program needs people in every state — and every skill set. Tell us where you can help.
- Meet with legislators or speak at hospitals and health fairs
- Marketing, fundraising, event planning, or legal support
- Founding-team roles as we build toward becoming a nonprofit