Meeting the Right Doctor, Getting Surgery, and My Diagnosis
After 22 years of chronic pain and exhaustion, 15 years of having “unexplained female infertility,” and being told by every doctor beforehand that my symptoms were normal and most women experience them, I finally have answers.
After advocating for myself time and time again, for decades, I finally found an incredible doctor this year who investigated my chronic pain, exhaustion, and infertility symptoms. From the moment she walked into the room with my ultrasound results and reported symptoms, she had ideas for what might be wrong and procedures we could do to find out what was wrong.
This February, she performed investigative and diagnostic laparoscopic surgery at my request, and within a month of meeting her for the first time, I had surgery and was diagnosed with Stage 4 Endometriosis.
This has been an insanely long, challenging journey. So many years of being ignored, written off, and being told by doctors there was nothing wrong with me. I suffered through years of my pain and exhaustion becoming increasingly worse. Last year my pain reached excruciating levels and I was hardly functioning for two-three weeks out of every month. All while being told by every doctor and specialist I saw, that I was fine.
Spoiler alert- I was not fine.
This year I discovered that I’ve been living with a progressive disease that is now in its most advanced stage and has caused permanent damage internally, resulting in 100% infertility and the plethora of symptoms I’ve been complaining about since age 12.
All of the Incorrect Diagnoses I Previously Received- IBS, Generalized Anxiety Disorder, Unknown Female Infertility, Sciatica
I want to discuss incorrect diagnoses because I have learned that it’s extremely common for women with endometriosis, like me, to take nearly a decade or more to get the correct diagnosis. Before a correct diagnosis, so many of us, including me, received incorrect diagnoses from various medical professionals.
Here are all the incorrect diagnoses I received that are actually related to endometriosis-
Unexplained female infertility- Read my original unexplained female infertility diagnosis story here.
Generalized anxiety disorder- diagnosed in my early 20’s. Later, at age twenty-eight, correctly attributed to PTSD, severe inflammation due to eating gluten with unknown gluten intolerance, and endometriosis. After finding out I had PTSD, I was able to seek proper healing. A year on medication to regulate my anxiety, EMDR therapy to heal my trauma, my own version of narrative therapy through creative arts, and I got a Master’s degree in mental health counseling to learn all of the mental health skills and techniques for wellness.
I also stopped eating gluten once I found out I was intolerant. Eating a food you are intolerant to causes severe inflammation, which flairs endometriosis symptoms and mental health symptoms. After receiving my endometriosis diagnosis this year, I learned that anxiety and depression can be symptoms of endometriosis and are often are incorrectly attributed to generalized anxiety disorder or major depressive disorder. After receiving the correct diagnoses and treatment, I am no longer anxious all the time.
When misdiagnosed, it can make a lot of women believe they will always be anxious/ depressed because they were told they had a mental health disorder. I wish more people knew that their mental health struggles could be a symptom of an underlying physical disease, rather than being caused by a mental health disorder. Also, many mental health “disorders” like anxiety and depression don’t have to be lifelong struggles if you receive excellent counseling and make mindset and lifestyle changes.
IBS- this is one of the most common misdiagnoses women when they see a doctor or specialist for gastrointestinal and digestive problems. Gastroenterology & hepatology doctors often don’t look beyond the scope of their specialty for answers, so if tests show no other obvious disease or cause for the issues, the patient is usually diagnosed with IBS. Gastrointestinal distress, including bloating, constipation, cramping, diarrhea, heartburn, nausea, reflux, stomach pain, and vomiting is a symptom of endometriosis.
Sciatica- without a known cause, I suffered extreme sciatic pain. It reached a pinnacle when I was unable to attend college for a couple of weeks because I was in too much pain to walk. Doctors, MRI’s, my chiropractor, physical therapist, and massage therapists couldn’t identify a cause for my pain. It was a symptom of endometriosis and not a single professional I saw was able to identify it.
I struggled with it for years with no answers or solutions. After being diagnosed with endometriosis this year, I read a book called Beating Endo, and learned that this is a common symptom for women with endometriosis, due to the inflammation and muscle dysfunction that the disease causes.
All of My Symptoms
Prior to receiving my diagnosis and reading books about the disease, I didn’t realize how many symptoms I had that were related to or caused by endometriosis. Here are all the symptoms I have or have had in the past-
Very painful periods
Infertility
Frequent urination
Underweight
Digestive pain
Nausea
Extreme bloating
Pain during sex
Cramps after orgasms
Vomiting
Sciatic pain
Spotting outside of menstruation
Constipation
Stomach pain
Light sleeper / waking up to urinate multiple times a night
Environmental and seasonal allergies
Depression
Chronic fatigue
Ovarian cysts
Nerve pain
Pelvic pain radiating from stomach and lower back
Anxiety
Overactive pelvic floor muscles
Nervous system sensitization
Headaches and Migraines
Irregular periods
Some symptoms I’ve had for decades, while others have developed more recently (like sciatic pain 8 years ago and irregular periods 2 years ago). As the disease has progressed over time, all of my pain symptoms have gotten worse and more regular. I used to have pain for a few days before and during my period. Now I have that pain, with the addition of my worst pain being the week after my period. For those doing math, the pain is 2-3 weeks out of every cycle with my irregular cycles being between 3-4 weeks long.
As the disease was silently growing, doctors told me I was fine and that most women experience painful periods and that my other symptoms were either attributed to incorrect diagnosis or unknown causes. In recent years the pain has become unbearable, requiring constant ibuprofen and tylenol, using a heating pad 24/7, being bedridden on the worst days, and often vomiting from the pain.
Post-surgery scars, surgical glue, bruising, and healing.
Months after surgery- buying new clothing to fit my changing body and accepting my little, dark purple scars.
If You Think You May have Endometriosis...
My priorities, my perspective about myself, the medical field, and my limited capacity has all shifted since finding out that I have stage four endometriosis. If you think you may endometriosis and are suffering with multiple symptoms, here are my biggest take-aways for you:
You need a great obgyn doctor who believes you– this is non-negotiable. I can’t count the number of obgyns and reproductive endocrinologists who didn’t listen to me or investigate my symptoms. I experienced gaslighting for years from doctors who told me that my reported symptoms were normal for most women and their only recommendation for me was to try hormonal birth control pills. I was 34 years old, with 22 years of suffering and the disease growing, when I finally met a doctor who listened, believed me, and immediately created an action plan to find out what was wrong with me.
She changed my life. Since my diagnosis, I have cried numerous times out of gratitude for her. Gratitude because I finally have validation that I am, in fact, not crazy. Gratitude because I finally know what is going on in my body, why I am in so much pain, and all of my symptoms are perfectly explained by this disease. Gratitude that knowing what is going on has allowed me to learn about the disease and create an action plan towards treatment options and a better quality of life in the future. Gratitude that someone finally listened. Gratitude because having a diagnosis means insurance will cover more of the things I need- like fertility procedures and surgery.
And in case anyone is curious- I live in the Charlotte, North Carolina region and the doctor who finally believed me and diagnosed me is Dr. Bianca Falcone with Atrium Health. Seriously, I can’t recommend her enough. She’s the best doctor I’ve ever had, obviously. And I’ve had a lot of them. I’ve literally cried because I’m so grateful for her. I trust her with my life.
It can be so hard, trying to find a great ob-gyn who listens to you, believes you, and is proactive in investigating. It took me decades to find one. But you do need one. Which leads me to my next takeaway.
You need to self-advocate– I don’t care how many doctors tell you that your symptoms are normal, you know your body better than they do. I firmly believe in intuition. If you have several symptoms and feel like something is wrong, you have to advocate for yourself.
The only way to diagnose endometriosis is through surgery to see if you have endometrial implants outside of your uterus. So if a doctor tells you that you are fine but they have not done laparoscopic surgery to rule out endometriosis, they haven’t done their job well enough.
Self-advocating requires grit- being able to stand firm when a doctor gaslights you and says your fine. And above all, it requires perseverance. Don’t do what I did and listen to every doctor or new doctor when they say your fine. Keep looking for new doctors until you get answers. It took me until the past year to learn that if one doctor doesn’t listen, find another.
As recently as January of this year, I sobbed leaving a doctor’s appointment because I felt so defeated, that I would never find anyone who listened. I sought out a new obgyn dr and asked for investigative surgery, and she told me that most women experience pain with their periods and they don’t just give surgeries without a reason. She scheduled me an ultrasound and a follow-up with a different doctor’s office “to assuage my anxiety that there was anything wrong.” She implied that she was booking the ultrasound to prove that my anxiety was incorrect.
I sobbed as soon as I got to my car. A few weeks later, I got the ultrasound (not my first of those, either), at yet another new office, and followed-up with a new doctor. And she was the one who listened. Within one month of meeting me, she did surgery and diagnosed me. One month after having yet another doctor tell me I was fine and my pain was normal, I was diagnosed with a progressive disease in its most advanced stage.
All it takes is one doctor who listens and believes you. And it can be hell to find that doctor, but you must keep trying until you do.
Read the book- Beating Endo. This has been the single most informative resource about endometriosis I have found. It has been invaluable since my diagnosis in explaining my symptoms, providing hope for lifestyle changes that can improve quality of life and the science behind the disease and the science explaining how their treatment recommendations can be helpful.
As a mental health counselor, google is one of the worst sources of information for medical questions and concerns. Go straight to a reputable source created by professionals who specialize in this disease. Beating Endo is the best resource I’ve found so far. I have an affiliate link for it on amazon, or you can try to find it at your local library!
Video discussion about my diagnosis, symptoms, and surgery.
All Other Details and Your Questions
If anybody is curious about what surgery was like, my tips on recovery from surgery, lifestyle changes I’m making for endometriosis, my treatment plan moving forward, or any questions you may have, let me know! I’m happy to answer and share.
The more people who share their stories and experiences, the less isolated and more aware others will be about the disease. Community with others is so helpful in providing support and encouragement.
After 22 years of chronic pain and fatigue, and 15 years of infertility, at 34-years-old, I finally got answers.
If you’re struggling, I hope you find answers, too. Sending well wishes your way.
Love, Laura
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