What Is Endometriosis?

Publisher’s Note: Chelsea Hardesty is a Lancaster, Ohio resident who has turned her personal experiences with endometriosis into a public fight for better diagnosis and treatment through her non-profit, Getting the Better of Endometriosis. We asked Chelsea to share her story, what she’s learned, and to provide some resources that could be helpful to others navigating the endometriosis path. We provided her a series of questions and have only edited her responses for clarity and length.

What is endometriosis?

Endometriosis is a chronic estrogen dependent / creating disease that can cause abnormal, displaced tissue to grow within the body. Those afflicted with endometriosis can face a lifetime of severe disability with symptoms occurring throughout the entire body, including incapacitating pain, organ failure, several repeat surgeries, infertility, increased risk for cardiovascular disease, increased risk for certain cancers, immune & endocrinological dysfunction, kidney failure, and damage to multiple organs and tissues, including the bowel, bladder, ureters, diaphragm, muscles, musculoskeletal structures, nerves, ligaments, lungs, and liver.

Due to the potential for such widespread, severe chronic symptoms, endometriosis is also one of the leading causes of school absences in teens and pre-teens. An individual with endometriosis can lose an average of 10 hours a week of productivity, in regard to holding a job, that makes it almost impossible for many.

Chelsea’s Endometriosis journey…

Chelsea Hardesty, founder of Getting the Better of Endometriosis, a non-profit advocating for better diagnosis and treatment.

Chelsea Hardesty, founder of Getting the Better of Endometriosis, a non-profit advocating for better diagnosis and treatment.

My symptoms began, now looking back, when I was 8 years old. I began passing out randomly, having stomach pain and GI scopes beginning as a child. Only showing inflammation I was basically told nothing was wrong.

As the years went by my symptoms increased. By high school I was still passing out, but more. The pain sent me to the emergency room for possible appendicitis often, to the point they turned me right back around or held me in waiting forever, until cysts began to form on my ovaries. Although something was showing in tests, I was told it was apart of becoming a woman and they would pop and go away on their own.

I began getting sick, vomiting, losing weight, and doctors began passing me back and forth like a lab rat to gastroenterology, then to neurology, can’t forget the allergist. All showing “nothing of concern,” yet I was experiencing great concern. I was entered into therapy, told it was all in my head. Tossed on many meds that only increased symptoms and added others.

Finally, they had me on a clear liquid diet, for three months. Then they tested my gall bladder. They discovered it wasn’t working properly and removed it. The symptoms did not get better, and I continued to get worse.

Basically, I lost hope in healthcare and myself. My mental health really took a turn. I almost gave up on life but kept going thanks to those who believed me and saw me and the pain for what it really was, debilitating.  Over the years I just lived like that, which caused strain on everyday life from waking up, relationships, jobs, simply living.

After not being able to take it much longer I began my own research journey, which led me to endometriosis. It led me to an entire community and information I had no idea existed. I realized how misunderstood this disease was, and thought, “Wow, this might be it!” I reached out to my gynecologist here in Lancaster. I should have researched a little more because I found the hard way that most professionals do not know how to find it! I was told I was clear as a whistle after he performed my first laparoscopy in the beginning of October 2018.

Gut feelings told me to get back into the community and dig, which led me to finding one of the limited specialists in Ohio, located in Columbus. Dr. Mini Somasundaram with Ohio Health heard my story and got me in for an emergency surgery that same month. She ended up finding and removing endometriosis on my colon, rectum, and bladder at the end of October 2018.

It took over 15 years of my then 24 years of life to find out what was truly wrong with me. Dr. Somasundaram has always been honest about not being the best, but she is skilled and trained, willing to learn and advance. She saved my life!

After that surgery, it released the strangulated organs, but sadly created another complication of my undiagnosed disease: rectal bleeding. I had developed hemorrhoids from being strangulated inside and they started bleeding in December of 2018. For a year I worked with a colorectal surgeon in treatments and upkeep, until finally it was time to have them removed.

As we began surgery talk, I discovered I was pregnant. With the rectal bleeding, mine was a high risk pregnancy. I was very sick the first trimester and into the second. Discomfort in my rear end constantly, and cramping. It was still beautiful to experience, but I was miserable. I ended up giving birth naturally. Contractions lasted 30 to 45 minutes with 3 to 5 minute breaks. This has been determined to be caused by distraught pelvic floor muscles from years of undiagnosed disease. I am just thankful that we got through that one.

Three months later I had the hemorrhoidectomy. A month after that I was right back in for another removal of endometriosis on my large intestine, a hysterectomy because of adenomysis (inflammation and abnormal growth of the uterine lining inside the uterine walls), and was diagnosed with interstitial cystitis (painful bladder syndrome). This happened in April 2022. I had never felt better after those two surgeries. I ended up with relief and resumed normal activity again for a few months.

Six months later symptoms slowly increased again. Hard to go to the bathroom, pain lower abdominal areas, nausea and vomiting, then the rear end pressure like I’ve never felt before. I knew something must be off again, so I was scheduled back in to get looked over.

How many people are affected?

Thanks to the efforts of those leading the EndoMarch movement, endometriosis is now being recognized as one of the most potentially excruciating and destructive medical conditions on record, affecting an estimated 1 in 9 people around the world. Almost as prevalent as diabetes in women, the total works out to roughly 8 – 9 million sufferers in the U.S. and approximately 200 million worldwide. When we look at Ohio alone, it breaks down to an estimated 400,000 individuals.

In regard to research, $3.22 per person is spent in research funds, breaking a mere $29 million, only a $14 million increase since 2008, and a significant one finally around 2021, after even having funds taken away for research avenues. Learn more:

Government Spending on Research by Category
EndoMarch Information about Endometriosis
About Endometriosis – Dr. Camran Nezhat – Endometriosis Surgery Specialist

What are the symptoms of endometriosis?

The most common symptoms are:
·        issues with periods: extremely painful, heavy, more frequent, irregular bleeding (can be one or all of these)
·        pain just before or after your period
·        pain during ovulation
·        pelvic pain at any time during the month
·        pain during or after sexual intercourse
·        difficulty getting pregnant (infertility)
·        nausea and vomiting
·        severe abdominal bloating
·        pain or bleeding with bowel movements
·        other bowel symptoms (ie, pain with bowel movements/ constipation/ diarrhea intestinal pain/upset stomach)
·        other bowel/gastrointestinal symptoms (acid reflux, loss of appetite, nausea with eating)
·        pain or bleeding with urination
·        other bladder symptoms (difficulty voiding/urgency/frequent urination/ incontinence)
·        pain in the lower back
·        pain in the groin area
·        fainting / falling unconscious due to pain
·        pain that mimics Appendicitis
·        pain that mimics Celiac Disease
·        pain that mimics Crohn’s Disease and/or Irritable Bowel Syndrome
·        pain that mimics Interstitial Cystitis
·        fatigue

Source: The Camran Nezhat Institute (specializing in Endometriosis Treatment)

A few atypical or less well-known symptoms include:
·        no pain symptoms at all
·        acyclic chronic pelvic pain i.e., pain all the time or anytime, independent of menstrual cycles
·        hip pain
·        leg pain
·        back pain
·        vaginal pain
·        groin area pain
·        nerve pain (sciatic, pudendal, etc)
·        musculoskeletal pain
·        pain in the shoulders usually coinciding with menstruation
·        pain on or near the kidneys usually coinciding with menstruation
·        pain in the upper abdomen usually coinciding with menstruation
·        pain in the chest area usually coinciding with menstruation
·        pain on or near the lungs or breathing problems usually coinciding with menstruation
·        pain on or near the diaphragm or breathing problems usually coinciding with menstruation
·        pain on or near the liver usually coinciding with menstruation
·        acid reflux symptoms (GERD) usually coinciding with menstruation

Source: The Camran Nezhat Institute (specializing in Endometriosis Treatment)

What are the challenges to receiving proper endometriosis diagnosis and treatment?

Research has revealed that the theories used to conceptualize women’s illnesses throughout the ages were highly susceptible to the influences of culturally determined notions of illness. This is a timely reminder that medical beliefs are never just the products of objective science but are equally likely to be reflections of the shifting whims of social norms. We also can see that, on some level, pelvic pain has been believed for centuries to be the deserved consequence of presumed depravity on the woman’s part—their imagined madness, weakness, or promiscuity manifesting as otherwise inexplicable cases of chronic pelvic pain; their ability to conceive children making them able to withstand pain; mothers telling their daughters the pain is normal and part of becoming a women.

These all have aided in the diagnostic delays of 15, 20, even 30 or more years.

When we seek help for endometriosis symptoms that emerge when we are children, we may be told we are “coming of age.” When we seek help as teens, if tests return ‘clear’ results, we may be told it’s mental health issues, we must be imagining things. When we seek help as adults we may be misidentified as drug seekers. These are just some of the challenges. They stem from the lack of proper education and guidance surrounding this misunderstood disease.

We often get misdiagnosed with IBS, anxiety, ovarian cysts; told to change our diets and even told nothing is wrong. 75.2% of patients reported being misdiagnosed with another physical (95.1%) and / or mental health problem (49.5%), most frequently by gynecologists (53.2%) followed by general practitioners (34.4%).

Gynecologists and General Practitioners may not have the time required to treat a complex, misunderstood disease. Currently less than 300 specialists worldwide know how to properly locate endometriosis in all of its appearances and treat it.

Looking at the 200 million estimated individuals suffering worldwide, you can imagine how many are being failed today. Not to mention within those 300 specalists, at least 20 reported cases of men born male have been found to have endometriosis, including unknown numbers of cases happening also involving trans and intersex individuals. This indicates endometriosis is not a reproductive or gynecologic disease but one of the whole body.

How to find an expert endometriosis diagnosis and treatment

Currently there are only a few online lists available to seek out a limited number of specialists worldwide:

The End of Endo Project features U.S.-based providers and includes pelvic floor therapists who are skilled in endometriosis care.
I Care Better allows you to find care providers worldwide.
The Yellow Hub features a combination of specialists and gynecologists with whom patients have had good endometriosis diagnosis and care experiences.

Visit each website to understand their criteria for adding doctors and care providers to the list. Keep in mind, many patients must travel to seek the care they deserve. The only way to properly diagnose endometriosis is through exploratory surgery called a laparoscopy. Once lesions are seen, samples are properly removed and tested for confirmation.

Six Questions to Ask When Choosing an Endometriosis Care Provider

What is your understanding of Endometriosis?

Everyone has a belief system. But persistent myths and outdated misinformation cause a lack of effective care. Many still think endometriosis is the uterine lining, shed through “retrograde menstruation,” while newer cellular analysis shows it is tissue not solely relegated to the uterus. Getting pregnant does not cure the disease, birth control doesn’t treat or suppress lesions – these simply contribute to “symptom control.” A hysterectomy is also not a cure but may provide temporary relief. Care providers who reference these beliefs may not be current on their understanding of the disease, its diagnosis and treatment.

What are your preferred endometriosis treatment protocols?

An effective endometriosis care provider should have around three years of proper disease treatment. Treating this disease takes skill. Find out this professional’s preferred treatment protocols and do additional research about their method and how it applies to your situation. Some brief insights: Medications only treat symptoms. Practictioners using ablation (a process using heat to burn of the top of the disease during a laparoscopy) may create some negative consequences including inability to recover a biopsy sample and creating a layer of scar tissue which may hid deeply rooted endometriosis lesions in need of treatment. “Excision removal” is accepted as a strong first step in treating this disease. Excision gets into the layers of tissue to remove visual disease.

Are you Board Certified in FMIGS?

FMIGS stands for Fellowship in Minimally Invasive Gynecologic Surgery. This is a relatively newer certification offered at just over 50 medical sites in the United States. According to the AAGL (a medical association promoting minimally invasive gynecological surgery), “A minimally invasive gynecologic surgeon is a physician who has obtained additional training and/or experience to manage complex gynecologic disorders, and can serve as a consultant for the community.”  Follow-up questions for an FMIGS-accredited professional would be how much of their training was focused on endometriosis, and, are they able to remove endometriosis anywhere in the body, not just in gynecological sites.

What kind of complex cases have you seen & treated?

Thoracic endo is one of the most top complex cases specialists work on. Sciatic endo & many other extra pelvic areas are also not as rare as you’d think.

What post-operative treatment is recommended?

Pain meds are given for a small amount of time after surgery. Some patients may receive a “Lidocaine Pain Ball” that has a direct line of meds going to the surgical area. Physical therapy and /or nutritional treatments may be recommended. The goal is to enhance the “big picture” approach to effectively treating the disease and any related gynecological pathologies. This is done through excision removal and pathology testing.

How much time does treatment require pre- and post-surgery?

This is a case-by-case answer due to the wide nature of endometriosis situations and treatment. If you are receiving laparoscopy, a minimally-invasive surgery does not mean minimal recovery. You’ll simply have a smaller incision for quicker healing on the outside. Healing inside will be longer than surface healing. Be sure to ask your physician about treatment-specific protocols for your healing and recovery.

How can people diagnosed with endometriosis find emotional support?

There are many support groups on Facebook and on the internet. Instagram has an entire community as well as others sharing their story, becoming advocates, and wanting to help others find help. It can be very hard to find support in a world that is just now correcting its understanding of endometriosis.

YOU ARE NOT ALONE. I began a non-profit organization in 2023, after blogging my journey since 2018. I realized the next step was to help others. I have teamed up with Worldwide EndoMarch as an Ohio Representative and Research Assistant. My non-profit is called Getting the Better of Endometriosis. Both organizations offer support and can be found on social media, providing references, studies, articles and updates:

Worldwide EndoMarch Facebook
Worldwide EndoMarch Instagram
Worldwide EndoMarch YouTube

Getting the Better of Endometriosis Facebook
Getting the Better of Endometriosis Instagram
Getting the Better of Endometriosis YouTube

What is your current situation and on-going treatment?

I am scheduled for my seventh surgery on August 8th, 2023. My first endo-related surgery took place July 19, 2017. The upcoming surgery is a rectal prolapse repair – my tail bone will be sutured to my rectom to mobilize it and prevent further issues. To relieve my chronic constipation we are also removing the left side of my colon with a bowel resection. This will be the most in-depth surgery I’ve had yet, and I am very nervous.

The issues my surgeries address all stem from years of undiagnosed disease, and, complications once my true diagnosis was found. If I’d not been properly diagnosed in 2018, I have no idea where I would be today. It scares me to think, and it worries me for the disproportionate number of individuals who wonder what is wrong with them.

I will be in the hospital for about 5 to 7 days and must remain very cautious during the two months of post-surgery healing. As a small business owner (I’m a dog groomer) my income will be coming to a halt and I’ll be relying solely on my husband, yet again. He has been an absolute rock, a steady foundation to this entire journey right next to my mother. I will be forever honored to have them in my life.

If you are interested in podcasts, I was just recently featured in the following discussing how Endometriosis Advocacy can be lifesaving. We have plans for more episodes in the future! Listen to Chelsea’s appearance on The Best Worst Club podcast.

We recently went with Worldwide EndoMarch and American End of Endo Project to Capitol Hill to meet with elected officials. We were able to share why were there with many people. If you’d like to hear us talk about our mission, check it out! View the panel discussion on YouTube.

By the end of October 2023 I hope to be feeling well enough to host an awareness event with a showing of the new endometriosis documentary called “Below the Belt,” and I’ll be celebrating my five-year diagnosis anniversary. I will be 30 years old this December 2023 and plan to host a Christmas Event. More information will be shared and posted as the avenues fall into line during recovery.

Filed under: Health, Life, Meet Your Neighbors, News, People
Chelsea BreeAnn Hardesty, founder of non-profit Getting the Better of Endometriosis

By Chelsea BreeAnn Hardesty

Chelsea BreeAnn Hardesty is Founder and President of the non-profit Getting the Better of Endometriosis. She is a research assistant and Ohio representative for Worldwide EndoMarch, and has hosted meetings with multiple elected officials in Washington, D.C. on the topic of endometriosis diagnosis and treatment.