Why It Took 15 Years to Be Diagnosed With Endometriosis

Dysmenorrhea.
Menorrhagia.
Anemia.
Ovarian cysts.
Transformed migraine.
IBS.
Cystic breasts.
Tilted uterus.
Kidney cysts.
Endometriosis.

[Note: This is my story for March/Endometriosis Awareness Month, and forewarning it is unpleasant and may be triggering.]

This list is the order of diagnoses starting with the beginning of my symptomatology at age 14. There are 15 years between the first and the last.
My anxiety at being able to bleed through two pads, plus two to three layers of clothing in just under an hour when my period started, was treated as an annoyance. My mother complained at the cost of pads I went through, but simultaneously insisted I was fine. After a few months of passing out, I finally convinced her to take me to the doctor. Despite having bleeding heavy enough to cause my hemoglobin to drop to a six, doctors at the time assured me this was simply the experience of “being a woman.” I went home with an agitated parent and a bottle of giant iron pills.

The iron did little to help, probably in part due to the nausea it caused, and the doctor took the next step to control my endless bleeding (by endless, I mean sometimes it went for a month or more without a single “light” day). They put me on the daily birth control pill. The headaches were brutal and the cramps stayed extreme, but at least with the pill I could get my period down to 7-10 days of bleeding instead of 30 or more. Still, the stabbing pains even when not on my period were exhausting.

I experienced years of infection symptoms, UTI, yeast, kidney, whatever they decided the inflammation and white cell count being off was attributed to on that particular day. Nothing ever changed. They’d say it took time, but so far this had been a constant. In addition, starting with my very first check-up after they prescribed the birth control pill, they started to harass me about my sex life. They’d make my mother leave the room and insist I tell them “the truth.” This was the same doctor who decided it was the best way to stop the bleeding. I didn’t understand why they acted like they forgot. It didn’t matter what I said or reminded them, I was still treated like a liar. I was not sexually active, nor could I even insert a tampon because it hurt too much. This was made even worse by the fact that my military dependent medical status had on my file that I was a child sexual abuse survivor. They knew this, they knew I was prescribed the pill for uncontrollable bleeding, and yet they gaslit me constantly. I was being dramatic; the pain couldn’t be that bad; I just needed to stop thinking about it because everyone dealt with this.

At 19, in trade school one day, I got a call about my recent pelvic scan results. I had a 4-inch mass on my right ovary. I burst into tears and my classmate comforted me. Trying to get the scan had been an ordeal. Even though I was currently studying anatomy and physiology, the doctor had demanded “how do you know the pain is your right ovary?” and I had gestured at my thin frame. What else would it be? I could pinpoint the exact spot that hurt constantly, with a stab each time I took a step on that leg. Although she protested it was probably gas, a bad cramp, or just another infection, she ultimately scheduled the scan and dismissed me.

The first opening to get explorative surgery to remove and check the mass for cancer was about four weeks out. At 19, I got to consider that this might be cancer. I had just gotten married. I was doing well in my school program. It felt like too much. About a week before the surgery, I had an excruciating day where the pain was so intense I had to crouch down. If I tried to stretch to stand up, the pain was too much. A couple of days later, they did another scan to confirm the location of the mass prior to surgery. It was gone, but the fluid proof remained. And so they diagnosed me with ovarian cysts of undetermined origin. Better than cancer, definitely, but unpleasant to consider this would be a regular part of my monthly cycle.

They also told me it was 99% likely I couldn’t have children. So what can I do about it all? I had asked. She had said hysterectomy was the only solution. “OK,” I had said. “I would prefer to adopt anyway.” She looked startled and immediately said no, that I was too young. How do you tell a patient there is only one treatment, and in the next breath tell them they can’t have it? Of course, we know why. There is a weighted expectation to not say you cannot have children unless you try multiple methods first. I was married, but this decision was still left to some possibility the doctor felt may arise if I changed my mind and wished to try the thing she just said I could not do. To her, I’m sure it seemed like she wanted what was best for me in the eyes of society. Maybe she didn’t want to be liable for giving a 19-year-old a hysterectomy in case I did flip and want children later. Regardless of her reasons, it felt like being damned to a lifetime of pain.

Around 24, the cramps and nausea added another layer: rectal bleeding. Being 24, the cancer concern came up yet again, and I was scheduled for a colonoscopy. The doctor said I had inflammation all the way to my duodenum, and internal hemorrhoids, but otherwise I’d be OK and just needed to alter my diet probably. I didn’t drink alcohol, smoke, or even eat meat, so the only culprit they could pinpoint was dairy. I was diagnosed with severe IBS and sent on my way. Cutting out dairy while living in the Midwest had been a challenge, but it was such a strange process to learn that digestion wasn’t supposed to hurt. I’d grown up loving milk and cheese, never realizing I’d probably been intolerant all along. It actually lessened my migraines as well, which was a bonus. In part, I can’t help but blame this on being constantly told pain was a part of my life because I’d been born female. This sort of internalized messaging keeps us in patterns of “we’re fine” long after we are not.

It should be different. Our system should be different. In grad school, I wanted to indirectly dig into all of this. I focused multiple research papers on the concept of healthcare disparities as well as issues of autonomy, and the results were disheartening. A 2019 study examining women with children found, “fewer than half of women obtained desired postpartum permanent contraception after vaginal delivery … fulfillment was unaffected by patient age, race, marital status, education, insurance type, high-risk status, adequacy of prenatal care, or parity.” The data I found blew up my preconceived notion that perhaps if I had children already, my care would have been at least a little bit better. Equally disturbing was the notion that this data was recent, as opposed to compiled by studies from decades back.

When I expanded my research to attempt to include the increase of these disparities when examining ethnicity and identity, I received pushback that my focus was expanding too far; the items were too vast and would lose the point. But to me, that seemed like part of the issue. It isn’t a small focus. It IS systemic. Sexism, racism, and a prevailing attitude of “I know best” remains. Although the research was depressing and felt overwhelming at times due to my personal connection to it, it did enable me to better empower myself and speak up to advocate for my own care better. This is hard for anyone, but I think part of my struggle is also due to a history of trauma and abuse in my youth.

I typed up a list of my current confirmed medical issues, my history, my unexplained symptoms, and my questions about care options and took it to my local planned parenthood doctor. He actually listened, took the time to address each item on the list, and apologized for the way I had been treated by the medical community. He did his best to be the person who finally listened and could help those unable to afford better, and it made me appreciate my community health center option that much more. I had to rule out that my kidney pain wasn’t something else first, but otherwise he had a list of doctors in mind who could perform laparoscopic surgery and finally determine if I had endometriosis or not. The fact that I had almost made it to 30 without the diagnosis was horrifying and shocking to him, considering how severe my symptoms were at the start. He explained that once I did have the diagnosis, doctors would now be able to treat me without needing justification first and I’d be able to pursue some of the items on my list. This is just how it needed to be for insurance purposes in America. To get me started, he at least switched me to a birth control I could take continuously and essentially never have a period again. Why it took until 29 for someone to tell me this was an option, I’ll never know or understand.

The kidney testing took some time, and they determined I had multiple cysts present, but they weren’t a source of pain in their opinion. I was cleared to get surgery. Being limited by insurance options, I chose the doctor that seemed best and was only 30 minutes away. I expressed my fears that if I did have it, it probably was spreading and causing the pain to my kidneys as well as my gastrointestinal issues. She comforted me by saying, “Whatever I see, I will scrape/burn/get rid of!” I felt hope for the first time in probably a decade. Because of the unknown kidney pain, I had slowly lost the ability to do some of the daily workouts I enjoyed, so the prospect of being pain-free enough to resume my past level of activity brightened my mood.

At 29, I was officially diagnosed with endometriosis. I had images of the areas she burned out, cut out, and of a strange mass she removed and had never seen the likes of before. It would be a couple weeks before my check-up/stitches check to discuss any of this. At first, I felt relief at only having surgery pain present and not anything else that I could tell. But by the time of my appointment, I was already feeling some of the other pains. I asked her if she had seen any endometriosis tissue on my diaphragm or around my kidneys. Her features sharpened and she gave me a sharp, “I can only cut out what I can see. That isn’t in the scope of a basic laparoscopy.”

My hope died yet again, and in the next weeks I’d feel a sense of betrayal. I thought I had prepared enough, but ultimately, I hadn’t realized there was a need to specifically find an “endometriosis specialist.” Any gynecologist can claim experience via laparoscopy, but as with my surgery they often weren’t forthcoming that this was limited until afterwards. Whereas a specialist will already have a full surgical team on standby. If they see it and diagnose it, each specialty surgeon can check their respective area for the endo tissue. For a successful endometriosis extraction, it has been compared to the surgical teams prepared for cancer surgeries. More challenges arise when considering that the burning method can actually cause more scar tissue to flare up in response.

So, what is the pain of endometriosis from, exactly? When someone with endometriosis has a period, there’s bleeding from both the cells and tissue inside the uterus, and also from the cells and tissue outside the uterus. When blood touches these other organs inside the abdomen, it can cause inflammation and irritation, creating pain. Scar tissue can also develop from the endometriosis and contribute to the pain, as well as cause adhesion between organs. It has been discovered that these lesions produce their own hormones and develop nerves, which may be why stopping periods does not stop the pain of these separate fluctuations. Additionally, this distinction of the tissue being outside of the uterus is also why hysterectomy does not cure it. The tissue will still grow.

Besides constant pelvic or lower abdominal pain, other symptoms include infertility, bowel and bladder symptoms (bloating, constipation, blood in the urine or stool, or pain with urination), and abnormal vaginal bleeding. Depending on the spread of endometriosis lesions (historically could be as far as the nose and brain or even knees), pain can be present anywhere. If you, like me, have a history of experiencing any of these, it isn’t normal and you don’t “deserve it.”

In my case, I am now 31. I still don’t know if the endometriosis has spread to my bowels, ribs, or kidneys. I get regular diaphragm and kidney pain in addition to crippling cramps, so it is hard to know. With the pandemic situation of the last year, I haven’t been able to see a new specialist. But I am better prepared this time and hopeful about the endometriosis specialty department at Stanford. I’m able to workout most days although many of my past workout routines have been modified, and I have shifted to working 100% remotely to avoid the tenseness of traffic and resulting pain I used to experience. As mentioned at the beginning, this wasn’t a pleasant story and my only hope is this information makes someone else feel less alone in their struggle and/or years of being gaslit by the medical community.

More funding has been allocated towards endometriosis research, so as a researcher myself I have to hold out hope we will have better options soon. If you’re at the beginning of your concerns that you or someone you love might have endometriosis, I recommend looking up Nancy’s Nook to get started. There are free resources as well as a comprehensive list of where to find specialists near you.