14 People On How They Were Diagnosed With Endometriosis
“I was on my first date with my now-husband and, because I’m an incredibly awkward human, I couldn’t think of anything to talk about except my bizarre menstrual cycle.”
We asked the BuzzFeed Community to tell us how they were diagnosed with endometriosis.
Endometriosis is a common condition in which endometrial tissue ends up outside of the uterus, leading to all sorts of symptoms and often debilitating pain.
Many people go through years or even decades of pain and hassle until they are finally diagnosed. Here are 14 of their stories.
1. A decade of emergency departments and specialists, and then an emergency appendectomy.
2. “Bad (and I mean bad) bowel movements throughout my period.”
I never got the typical symptoms they tell you to watch out for (insane bleeding, unable to move because of the pain, etc.). So I never thought much of it. I just kept going back to the doctor for the individual symptoms I was experiencing. I would be going about my day and suddenly be crippled by a sharp pain in my abdomen, or have a long sustained cramp all day because of tight jeans, which were fine the day before. Sex was almost impossible without getting some weird symptom like bleeding or pain. The timing never really matched up with my period, so it never crossed my mind as a possibility until I started getting bad (and I mean bad) bowel movements throughout my period.
I had been bouncing back and forth between doctors for endless possible diagnoses — potential STDs or a food intolerance were common — until a doctor booked me for a surgery to confirm whether it could be endo.
There ended up being tissue on both ovaries and my bowels, which explained my symptoms. After that I was told not to eat gluten, dairy, sugar, or caffeine, and I was told my chances of having kids past the age of 27 were low. I am frequently turned down for gynecology appointments at my local hospital due to short staffing and my case not being an emergency. I still have so many questions.
3. Three years of changing birth control.
I went to my OB-GYN for pain with sex (I had been with my partner for over a year at this point). He said it was probably just heavy period and changed my birth control.
This cycle of changing birth control with no symptom change continued for three years before I demanded surgery. After surgery they found I had severe stage 2 endometriosis.
4. “My mother-in-law.”
After I got married, my husband insisted that everything I was dealing with wasn’t a normal period, which led to my diagnosis. But my mother-in-law is the reason he knew. She had been to so many doctors. By the time she turned 50 she was done, and scheduled a hysterectomy. After so many years of misery, only then did she get a diagnosis. It had taken her ovary and fused it to the bottom of her uterus. She wanted more kids but only could have my husband because of this.
We have to be our own advocate to get this diagnosis. If we aren’t, even our hope for children can be taken away by this awful thing. Reading all the BuzzFeed articles have made me feel not as alone. #endostrong #endogirls
5. “When I wanted children, finally a doctor took me seriously.”
My very first period at age 13 lasted two weeks and was extremely painful. That’s how it went for a few months until my mom took me to the gyno. They gave me birth control, which helped. I still felt pretty shitty every month. At 15 I was having pelvic pain, and when I sneezed hard my ovaries hurt. It was brushed off. I asked about endo, but they said it was impossible at my age.
I started gaining weight at 16 and it went out of control until 18, when someone tested me for hypothyroidism (definitely had it, but gynecological concerns ignored, dismissed as obesity issues). At 19 I was diagnosed with PCOS. The pain was attributed to that. This whole time no treatment besides the pill was ever offered. Every year I asked about endo and was told I was “too young” to have endometriosis. For the next few years I begged doctors to diagnose me. I was in so much pain every month I had to take at least one day off of work. One time I couldn’t walk without vocalizing pain. At 25 I had a 7-cm cyst that everyone refused to remove, despite the pain. They also denied I could have endometriosis because I was “still so young.” They just kept changing my pill brand.
One asked me how I knew I had it, and I described how it felt like my colon and uterus were connected but were constantly being ripped apart. It was dismissed as constipation. The cyst has since shrunk a bit.
At age 27 when I wanted children, finally a doctor took me seriously. She listened to everything and did an exam with ultrasound. She said she had no doubt I had it. She recommended waiting on surgery until after kids. She also was appalled no one ever recommended an IUD. That was incredibly helpful. I’m no longer in constant pain or discomfort. With her help we got twins. Honestly, the birth of my twins was less painful than the ripping sensation of the endo.
6. “I had it for probably 20 years.”
I was diagnosed at 40 — 6 months ago — when I had a complete hysterectomy. The hysterectomy was for cervical cancer low grade. Since my teens I had excruciating pain, bloating, heavy bleeding, diarrhea. Doctors never even considered endometriosis. Turns out I had it for probably 20 years. I now have severe scarring and abdominal adhesions.
7. “After I started transitioning, my periods stopped but the cramping and pain did not.”
I’m transgender and before I started testosterone, I always had irregular and painful periods. As I got older they got to be so painful that I couldn’t get out of bed to walk to the bathroom on my own.
After I started transitioning, my periods stopped but the cramping and pain did not. In fact, the pain became even more intense and chronic. My general physician told me it was a probably a food allergy, but referred me to an OB-GYN to get me to stop nagging. My OB-GYN didn’t believe me when I described the chronic pain I was living with, but also referred me to a surgeon for a hysterectomy because I was trans and “didn’t need a uterus anyways.”
My surgeon was the first and only doctor to believe me about the pain I had been living with for over a decade. I had my surgery this past September and at my post-op she showed me pictures proving I had had endometriosis all along. We both cried in her office. She gave me my life back.
8. “I had my period nearly all the time for two years.”
I was diagnosed with stage 4 endometriosis when I was having surgery for uterine fibroids at age 32. I had always had horrible periods where I was in excruciating pain and frequently missed school or work. Sometimes I was even vomiting. I also had my period nearly all the time for two years (yes, two years). My doctor sent me for X-rays for my back pain and to physical therapy. She told me I would be dealing with this pain for the rest of my life because it was from a hip issue from when my hips were dislocated at birth.
At this point I was drinking liquid Tylenol from the bottle and going through several bottles a week. I was teaching high school biology at the time, and I would literally lose the ability to speak in the middle of class from the pain. I started googling my symptoms myself, and suggested one of the diagnoses I found to my doctor — fibroids. I went for an ultrasound, and that was what I had. Turned out not only did I have three different types of fibroids, but I also had two different kinds of ovarian cysts as well as stage 4 endometriosis. It was a seven-hour surgery. They removed eight pounds of fibroid tumors, one of which was the size of a grapefruit.
Ladies — I had been asking doctors for YEARS if there was something wrong with me and I was always dismissed. No one believed me. You need to keep looking for a doctor that will listen when your body is telling you something is wrong. You are not crazy, or dramatic, or exaggerating.
9. “I am not one for doing things without knowing the whole picture.”
10. A school field trip gone wrong.
I went on a field trip to a city two hours away from home as a teenager. On the way home, I suddenly had a stabbing pain in my gut. I felt on the verge of passing out — I was throwing up and could barely breathe.
My teacher called the ambulance, and I was rushed to the nearest ER, which was 30 minutes away. After being in the ER for hours, having tons of tests run on me as the doctors thought my appendix ruptured, they found out I had an orange-sized cyst that ruptured. In total, I was in the ER for seven hours, which ended with an endometriosis diagnosis.
11. “It wasn’t until I was pregnant that they realized.”
I’d always had extreme pain and was told by all my doctors (all male) that that’s what happens. It wasn’t until I was pregnant that they realized during the ultrasounds that I had tissue where tissue wasn’t meant to be.
12. “I was on my first date with my now-husband.”
13. “A throwaway comment.”
I was told by the discharge nurse after I had keyhole surgery for ovarian cysts. It was literally a throwaway comment — “Oh, we noticed some endometriosis scarring.” Nothing to follow up the comment regarding how I manage my endometriosis or treatment options, and no further discussion.
14. “I missed 140 days of my senior year of high school.”
I was 15 when I fell down in my school cafeteria because my right side was exploding. My primary care physician found a golf ball–sized ovarian cyst, started me on birth control, and sent me home with Vicodin.
One year, 81 days of school missed, four different birth controls, a chiropractor, an acupuncturist, countless ultrasounds, and three OB-GYNs later...someone finally said “endometriosis.” After forcefully saying no (at 16!) to medically induced menopause or a full hysterectomy, I had a laparoscopy to remove the lesions and adhesions that covered my right ovary and all of the muscle tissue around it. I missed 140 days of my senior year of high school because I couldn’t bear to move, went through three rounds of pelvic physical therapy and myotherapy, and I still cannot exist, let alone sleep, without a heating pad.
Seven years later I have improved — or just learned to manage? And my life is infinitely more active than I ever thought would be possible. But I still keep Vicodin in my purse for the bad days, and I still wonder if I will ever have a child.
Community submissions have been edited for length and clarity.