My periods were always painful and heavy. I recall in high school having to wear super tampons plus a night pad to prevent leakage. I recall waking up in small pools of blood sometimes where a nightpad wasn’t enough. What pointed to endometriosis was a specific day: I was 18 years old and awoke in extreme pain and a pool of blood. I fainted that day at work in front of my peers from blood loss and fatigue. My primary care doctor suspected endometriosis right away (luckily), and put me on birth control pills while I waited to see a specialist.
Yes, in retrospect I can definitely say all the signs were there. The “endobelly” being the main one. I remember that it was sort of a running joke with me and my buddies that I looked pregnant during my period. But now, I remember that other girls did not swell like that. The fatigue with the period too. I always fought through it and carried on with my life, but some days were quite difficult.
My primary care doctor sent me to a gynecologist as soon as she suspected endo and I waited months for the appointment—with the first of seven gynecologists. I was a virgin, yet, the first 6 gynecologists were insistent that I was lying about my sexual status, and that my pelvic pain was due to STDs. Each doctor simply tested me for STDs (which came up negative), put me on a new birth control and pain killers and shooed me away.
Even though my PCP referred me with suspicion of endometriosis, the gynecologists often said I was too young for an endometriosis diagnosis. My appointments with the first gynecologists were very impersonal and short. Even at such a young age I could tell that I was not receiving their full attention. I remember being mortified that the first time a man would touch me would be in the gynecologist’s office, but I was so desperate that I went along with it.
I even recall a time my endobelly and pain was so severe, I went to the ER. I told the ER doctor my history. I recall him laughing at me when I said I had never had sex. I remember feeling so uncomfortable that these old, white men were telling me that my pain was “part of being a woman” and that I needed to learn to deal. In retrospect, it took a lot of courage for me to be honest with these men and trust them to help me get better, but I was dismissed.
My gynecologist journey was a little over a year. I think my major bleeding/fainting moment happened when I was 18, and my first surgery was when I was 20. The symptoms definitely progressed during that time.
You can imagine at 20 when I had my first surgery and had the official diagnosis of endometriosis— what a relief it was—validation that my pain was real, my struggles were real and I was not crazy. I already had built up a fair amount of scar tissue in there from my body healing previous endo adhesions.
My angel gynecologist had a private practice specializing in minimally invasive surgeries for obstetrics and gynecology. She worked with me for a few months switching up birth controls to see if I improved until I could not take it anymore. I remember her palpating my belly during a flare up and I started to cry. She was taken aback and pointed out this was not normal. Then I had my first surgery. She took the time to explain my condition to me on the molecular level which is what I needed to feel comfortable. She took me seriously. She knew I needed to get the condition under control in order to continue my education.
I was diagnosed at stage 2 endo.
I had repeat surgeries because “endo is the gift that keeps giving,” even though it’s not a gift you want. Even a thorough cleanup job may leave behind new adhesions that cannot be seen and will proliferate after a surgery. My doctor told me that cleaning up adhesions may encourage new endometriosis growth too. It is a life-long disease, and my journey is severe.
Again, I am blessed to have my angel gynecologist who warned me about this. After my first surgery she explained that with stage 2, I would be back in surgery within a couple of years and that the process would be the same. Try to manage with an IUD and oral medications until I simply could not take it anymore. I've had 3 more surgeries since the first one, one every 2-3 years.
I used to be scared of surgery, but now that I have experienced it and the relief that comes, I know how to listen to my body and hear when it has had enough. Snip snip that endo!
I shared some of what I was going through with my mom. I think after the first 3 or 4 gynecologists, I shared things with my dad. He suspected that maybe I had similar gastrointestinal issues that he had. It was frustrating trying to prove that there was a difference between menstrual and gastrointestinal pain.
After my first endometriosis surgery, my doctor discussed freezing my eggs. I am a biologist, and I thought, “Why would I fight nature and force reproduction?” I did not want to pass on my disease to a daughter. However, my parents and brothers strongly disagreed with me and tried to convince me otherwise. That was a very uncomfortable time for me—having my reproductive issues be a family discussion, almost turned fight. Ultimately, I did not get the procedure done. Despite the hard times, I am so thankful that we struggled through it together because I can talk openly about my endometriosis status without it being confusing or awkward.
I have undergone many additional treatments to manage endo. Psychotherapy, physical therapy, and acupuncture. I would recommend this to all my endo warriors too. Acupuncture is great for relaxing and managing the musculoskeletal symptoms that arise with endo. I will say it is not a cure-all for endo, but for skeletal pain with flare ups it is wonderful. Also for skin breakouts! When I get flare ups, my pelvic floor muscles spasm. This has been difficult to combat because they are involuntary muscles that you cannot simply command to relax. I have also gone to several years of pelvic floor physical therapy.
I am a proud advocate for psychotherapy. This disease sucks. When you are young and women around you are having babies, having casual sex or just existing without pain, it is easy to get jealous. I still work on this to be honest! Endo is a life-long disease and it causes so much fatigue, especially mental fatigue. If my mind is in the right place, I can more easily accept my pain and my disease, and on some days, even love my endo.
I would be remiss if I did not mention my family and my partner here. We have a thing now, where if I am in a big flare up (we call it “the big ouch”) that they all respond with pictures of our animals. It is a quick way to bring a smile to my face and to bring hope. My partner’s way to help me manage endo is with food. I generally eat a non-inflammatory diet as much as I can. But if I have a big ouch, I can always count on some ramen or some sushi magically appearing when I need it most.
It should not have taken 6 doctors to believe me in the first place. An earlier diagnosis would have meant managing my symptoms and understanding my disease earlier. This is a no brainer. Not just for endo, but any disease.
A test like DotEndo would have meant saved time, saved tears, saved fight or flight hormones in my body, saved sleepless nights wondering what's wrong with me. A direct line to treatment and not floating around life praying for a diagnosis and praying for help.
When I first started dealing with the endo symptoms, I was trying to figure out living away from home in college. Making new friends, figuring out classes and trying to stay healthy. I remember being invited to dances and parties and always leaving early because of pain and fatigue. I remember having to tell my microbiology teacher that I needed to leave class and go to the emergency room for unexplained pain. I remember leaving ecology class early to throw up from pain.
All of these little embarrassments and inconveniences may have still been there, but been so much easier to handle. Just KNOWING that I had endo made my life feel easier and more secure. I could have pain and think there is a reason for this pain. You are not making it up. You are not crazy. Just the validation and knowing that there is a diagnosis provides a mental relief.
Endometriosis is common. Endometriosis is not-well understood, understudied and underfunded. I am currently receiving my PhD in biophysics from a medical school, and it is infuriating to me how much we know about obscure diseases, and we know almost nothing about this common disease.
I wish people knew that endometriosis is not just your womb. It is a systemic disease. It affects your entire body’s ability to function. If you have adhesions on your colon, it affects your digestion and bowel movements. If you have adhesions on your diaphragm, it makes it hurt to breathe. Not to mention the mental exhaustion of being in pain all the time, and the physical exhaustion of chronic pain. It takes a lot of energy and resources to grow the extra endometriosis tissue! It is like a parasite! Endometriosis is a whole body disease.
I wish people knew that women with endometriosis are fighters and so much stronger than one could even imagine.
Having endo and struggling with it has made me blossom into a better woman. I respect myself a lot more. I have learned to be a lot more patient with myself on pain days. I have learned to trust myself and my body—if I am in pain it is real and I am not making it up. I have learned to be more patient with other people. If a woman was rude to me in the grocery store, hey, she may have endo and may be in pain! You have no idea what everyone is silently struggling with.
Being forthcoming and open about endo has made it easier to deal with. I am not ashamed of this disease. And being able to tell my boss, my friends or my partner: hey. I am drained today and need a couple of hours to reset, makes all the difference. Endometriosis is part of me. Learning to embrace this part has taken years of therapy and patience. But ultimately, I would not change any part of my endo story.
If you're interested in sharing your endometriosis story with the DotLab community, please reach out to firstname.lastname@example.org
Photo submitted by patient