Hello! If you are here then you know that I have been struggling with endometriosis (AKA endo) for the majority of my life as a menstruating person. I was only diagnosed with endo at 32 years old, and I am soon to be 35! Read on to find out more about endo, what I experience with it, and what my plans are for this disease.
BACKGROUND:
Endometriosis is defined as a systemic, inflammatory disease where cells similar to the lining of the uterus (endometrium) grow in lesions outside of the uterus where it doesn’t belong. Endo lesions can and have been found on the ovaries, fallopian tubes, sciatic nerve, bladder, ureter, intestines, appendix, bowel, muscles in and around the pelvis and abdomen, diaphragm, lungs, the calf muscles, and even in the brain. Even though endo lesions are found outside the uterus, it still acts like it normally would during a menstrual cycle—it builds up, breaks down, and bleeds. But unlike the normal period blood that leaves the body, this blood and tissue has nowhere to go, causing inflammation, pain, scar tissue, and even infertility in 50% of patients. Other effects of endo include endometriomas, a specific type of cyst that indicates deep, infiltrating endo and can contribute to ovarian cancer.
Because of the vast array of locations that endo lesions can be found, the main symptoms are extensive pain during all phases of the menstrual cycle, even when a person is not actively menstruating. Importantly, endo is a disease that also affects people without uteruses. Research shows that endo lesions have been found in people assigned male at birth and even fetuses. Since endo is an inflammatory disease, stress can make pain and symptoms associated with endo worse. Obtaining an endo diagnosis takes an average to 7-10 YEARS, mostly due to misinformation about the disease and medical misogyny, leading to inadequate care and treatment by medical professionals. Most symptoms get worse as time progresses, because endo can create its own estrogen that feeds and spreads the lesions throughout the body. Endo also has a high correlation with other auto-inflammatory diseases. Once a person is diagnosed with endo they are often diagnosed soon after with another auto-inflammatory disease.
THERE IS NO CURE FOR ENDO. Hysterectomy is NOT a cure because the lesions grow outside of the uterus. The best option for patients is excision of the endo lesions with a doctor that specializes in the study and surgical removal of endometriosis. Excision with a GREAT doctor lowers the chances that the endo lesions will come back. Further, the only way to determine how bad the endo lesions are is to do an exploratory surgery, and during that exploration to also excise the endo lesions.
MY STORY:
Throughout the process of trying to get a diagnosis, I have been invalidated by medical professionals who I thought would help me. I have been misled, ignored, told to go on birth control, that my pain was “normal”, or even to take pain relievers to make the pain go away. It has been a frustrating experience. Every time I go to the gynecologist I cry. I’m not joking. I cry every time because I know that I will not be listened to or heard.
I had my first period at about age eleven, and I remember it well because I had startling cramping that lasted numerous hours. At age 16 my period pain and cramping were so severe that I was taken to the emergency room where they prescribed me Vicodin but did not mention anything about endometriosis. Another time in my 20s I was again experiencing extreme cramping during my period. I had to drive 45 minutes for an errand that I couldn’t get out of, and during the drive I was pulled over by a cop for speeding. I didn’t know that I was speeding because all I could think about was getting to my location so that I didn’t pass out during the drive due to the intense pain I was in. When I explained to the cop that I was experiencing extreme cramping from my period, he made me get out of the car and wait on the side of the highway while he wrote me a speeding ticket (the invalidation doesn’t only come from doctors!).
In addition to the severe cramping I also get a multitude of other symptoms that have progressively gotten worse as I’ve gotten older. Every three cycles or so, like clockwork, my pain gets so severe that I pass out. My vision goes blurry, I sweat all over my body and get chills, my hands cramp up, I can’t talk, my ears ring, my thighs and back hurt, and I can’t stand up. Other times I vomit uncontrollably. Over the counter pain relievers do not help in these severe instances, because by the time I’m this sick its usually too late to take over the counter medication. It feels like someone is stabbing the inside of my body with a sharp stick and twisting it around.
I also develop extreme bloating in my abdomen that is so painful that I can’t wear jeans or pants. This is called endo belly and it makes you look like you’re three months pregnant. As I’ve gotten older I’ve developed what I now know are lesions of endometriosis on my bowel, making bowel movements painful. Now that my disease has progressed, I am almost sure that these lesions are adhering to other organs, or adhering my uterus to other organs inside my abdomen. I get painful sciatica, thigh pain, and back pain, all right before and during my period. I call the worsening of my symptoms flare ups, because that it what it feels like. I also experience extreme fatigue. When I am under extreme amounts of stress (hello, graduate school!) my symptoms and flare ups during my period are worse.
No one should ever have to live this way. Pain this severe during menstruation is NOT normal. And frankly, I am tired of people telling me that it is. Living with a dynamic disability is very frustrating.
WHAT I AM GOING TO DO:
After a long fight in trying to figure out why my periods were so painful, I was finally diagnosed with endometriosis at 32 years old. At first I considered a hysterectomy and talked with my gynecologist in State College about this. However, after doing my own research, I realized that a hysterectomy would NOT solve the issues with my pain, because endo is not confined to the uterus! My doctor didn’t tell me that a hysterectomy was not a cure for endo!
My next course of action is to have the endometriosis excised from inside my body. I now have a doctor that specializes in endometriosis excision, however, they are located in Atlanta, GA. This group is called the Center for Endometriosis Care, and they are the best excision specialists in the world. However, this surgery comes at a hefty price.
My specialist is an insurance friendly out of network provider, meaning that they will file a claim on my behalf to appeal for coverage/reimbursement after the initial claim has been filed and/or denied. Still, I have to cover the up front costs of the surgery, and if I am reimbursed by my insurance, will not receive that money until much later after the surgery has already happened. I might not be able to get surgery this summer if the doctors have a long wait list, and I will no longer have insurance by August 2025 because I am graduating with my PhD. After my insurance runs out I will have to cover the cost of the surgery completely out of pocket and on my own.
My estimated out of pocket cost for the surgery and hospital stay in Atlanta is about $18,000 (prior to any coverage by insurance if available). I will have to pay this fee up front, in addition to flights and accommodation before and after the surgery. My specialist requires that I stay in the hospital for three days after the surgery, and another three days in Atlanta after that in case there are complications. I am hoping to schedule the surgery in the coming months.
To be frank, I simply cannot keep living my life in constant pain. I live in pain for half the month, every month, so even though it is a lot of money, the cost of this surgery is worth every penny. I will find a way to fund it, even if it means taking out loans or putting it on credit cards. However, (though I was hesitant to do so) my friends have also encouraged me to ask for help. I am starting this go-fund me page to help fund this surgery. If you are willing and able, I would appreciate any donation, no matter how small, or even appreciate you sharing this message and fundraiser link on social media.
Thank you for reading this and donating. Let’s make period pain a thing of the past. If you know someone who has extensive pain with their period, please give them a hug and tell them that their pain is valid! No one should have to live this way.
I love you all!
<3 Megan
