Last week, I wrote about endometriosis as a condition – what it is, what it looks like, and how it’s managed – so this week, I wanted to share my struggle to get diagnosed with endometriosis. It was long, hard, and discouraging, and if my story can help anyone feel less alone, push them to see just one more doctor, then it’s worth it. Having a disease that is notorious for taking a long time to get diagnosed (not because it’s rare or so hard, but because the medical community dismisses women) – well, it messes with your head. If you’re having symptoms and feel like you’re being ignored…just know that you are not alone and you are not crazy.
When It All Began
I was 10 when I first got my period. I’d had periodic stomach issues before then, but nothing too significant, and I don’t know how much those early issues were connected, so 10 years old is when my story begins. My period snuck up on me in the middle of the night, complete with painful cramps, nausea…the works. Because of my age, my mom took tampons off the table, and taught me how to use a pad.
After a few days, I was still in pretty significant pain, and I was going through a fair amount of pads – more than my mother or my aunt ever needed to use, but still within a relatively normal range. In my family, it’s tradition that when you get your period, you go to a gynecologist for the first time, so they made the appointment, we mentioned that the period seemed a bit heavy and very painful, and the doctor responded that periods can be odd when they start, and it could take a year for it to regulate, but in the meantime, there was nothing to worry about.
The next few periods were also heavy and painful, but we didn’t think much of it, nor the fact that at minimum, they lasted a full week and often a few days longer. It wasn’t until I was almost 12 that it really started to get out of hand.
By that point, more than a year had passed since my periods had started, so we’d hoped they would regulate by then, and we’d moved down to Georgia. My mom offered to take me and a friend to Savannah for a long weekend, and I was so excited – my period ended the day before we left which was just perfect timing, and I was going to get to just have fun with my friend. After dinner the first night, however, I went into the hotel bathroom to find my period had restarted and stained my underwear. Since my friend and I were supposed to go for a swim in the hotel pool, pads weren’t an option, so I reached for a tampon. My mother heard me trying to figure out why it hurt when I put it in, and came looking for answers, which is how she found out my period had returned way too soon. After that trip, she had me track on a calendar exactly when I had my period, which is how we finally realized it wasn’t coming once a month, but two or three times a month and lasting for 10 to 14 days on average. That information earned me another trip to the gyno.
The doctor did a basic exam, listened to what we had to say, and then made her diagnosis: Everything was fine, I was young, it can take time for periods to regulate. Nothing to worry about. And she sent us home.
When Things Started To Change
We tried to wait it out. We tried to believe the doctors, because they went to medical school and we didn’t. But when I was 13, finishing up 8th grade, things changed some. We ended up back in the doctors office because for 3 years I’d been missing school regularly due to period cramps, I was constantly exhausted, and nothing was getting better – my periods were heavy, long, and irregular, and since I’d moved onto tampons, we’d noticed I was going through a lot – like two boxes every period.
Since I was a teenager, the doctor finally said I could start on birth control, which should stop and manage my periods, and prescribed a low-dose pill. The pill did nothing, and after two months, during which my periods were the exact same, we went back to the doctor for something stronger.
That stronger pill seemed to be the catalyst to unleash uterine hell. Rather than stop my period, I had my period for a month solid – and not any wimpy, two-or-three-tampons-a-day period. I’m talking a tampon every hour or two and I would completely bleed through it. And so we went back to the doctor, who simply said to keep taking it, it will regulate.
Nope. My mother was done with that. She found a different gynecologist, made an appointment, and took me in. This gyno stopped the pill I was on, listened, and then said some kids just have heavy periods, there was no indication that there was an actual problem. She prescribed a different pill to try and sent us home.
This continued for the rest of the time we were in Atlanta. After that one really bad month, none of the pills had such severe effects – but they didn’t help, either. And my periods never really returned to (my decidedly not-normal) normal. They stayed heavy, to the point I was using a super tampon and an overnight pad together, and would bleed through both in an hour. The periods lasted two weeks on average, and generally I only had 5 to 7 days between periods.
Just after I started high school, we moved to Augusta, which coincidentally has some really good hospitals and doctors – supposedly. My mom immediately got me into a new gyno who, surprise surprise, said it can take some time for periods to regulate. At this point, it had been four years, I think we should have been past that. My mom also brought the periods up to our new general doctor, who agreed to run some bloodwork – the first doctor in 4 YEARS to do that.
The bloodwork came back showing some severe anemia, to the point where I occassionally needed transfusions during or after a period. And yet, no further diagnosis. In regards to my cramps, he said it was irritable bowel syndrome and recommended more fiber in my diet. And home we went, again.
We continued to see doctors – gynos, gastrointestinal specialists, and the GP – for years, with no luck. Most thought I was overreacting. One Catholic hospital agreed something was probably wrong but refused to test for anything because it would go against their faith to treat the most likely issues (treatment would require birth control or surgery that could affect fertility). I had a few MRIs and CT scans done over the years, because regularly, my pain resembled appendicitis, but nothing ever showed up.
I Almost Died
Here’s the thing about chronic pain. Life doesn’t stop. You might wish it does, there are days when it might feel like your life will actually end, but you still have things to do. And at some point, your body learns to tolerate it. I would spend days walking hunched over clutching my stomach, but I still had to pay my rent, which meant I still had to work.
When I was 19, my cramps were so commonplace, I didn’t remember a time when I didn’t have them. I’d given up on doctors – between not having health insurance and being dismissed so much, I just didn’t see the point in trying anymore. Occasionally, my friends would see me on an exceptionally bad day and would try to get me to go, but I refused. Then, one night, my roommate came home to find me crawling from room to room, physically unable to stand. I hadn’t gone to work, and had passed out a few times that day from the pain – not normal but also not completely out of the ordinary. She demanded I go to the emergency room, and when I refused, she simply had her boyfriend pick me up and put me in the car.
The ER doctor poked around my abdomen a bit, checked my medical history, and then gave me his diagnosis. Essentially he said I had pelvic inflammatory disease, likely from an STD, and I was going to die. I probably only had a few days left. When I pointed out that I’d never had an STD in my life, and was checked regularly, he waved his hand in the air and, seeing a 19 year old, sexually active girl, said I must have at some point, even if I didn’t know. Then he sent me home. No tests, no pain medication, no kindness or sympathy.
My saving grace was that a scared, dying 19 year old girl wants nothing more than her mother. Mine drove down from North Carolina, breaking all sorts of speed limits, and picked me up to take me home with her, so that at least I would be surrounded by family. 48 hours after leaving the ER, I turned grey (supposedly – I was delirious by this point, so I was filled in on this part afterward) and started running a fever. My mother rushed me to a nearby urgent care, where one of the first good doctors I’d ever had took one look at me – still in the waiting room – and said “Kidney infection.” Yes, it absolutely played out like that scene from Friends.
“What else could it be?”
After I argued with her for a few minutes as they wheeled me to an exam room (I still couldn’t uncurl enough to walk), she decided to humor me. She started an abdominal exam by pressing lightly on my kidney, at which point I nearly hit the ceiling from the pain. Then she ordered a blood test and urinalysis, and asked why it had taken me so long to get checked out when the pain was so bad. I explained about my cramps, and she said that my periods, my pain was NOT normal. She was the first person to clearly acknowledge that. Unfortunately, she was also not in a position to tackle those. FYI – she was right about the kidney infection – it took 2 weeks of daily fluids and IV antibiotics, plus another 6 weeks of oral malaria-strength antibiotics to cure it. The ER doctor was right about one thing – I would have died that week.
However, I still didn’t have health insurance, and I still didn’t trust doctors, so it was another 2 years before anything changed.
The Light At The End Of The Tunnel
When I was 21, I moved to North Carolina to be closer to family. I got a good job that came with health insurance, and the kidney infection had scared me pretty good, so when my cramps worsened significantly, I willingly went to the ER. I sat in the waiting room for 6 hours, my right side feeling like I was being stabbed, and didn’t see a single doctor. So, frustrated, I went home. My mother recommended that I see her general doctor, and reluctant as I was, I went, figuring at least she can tell me if I’m dying again or not.
Dr. Mac. She was the first of the two amazing women who changed my life. Dr. Mac worked me into her packed schedule the second she heard I was having pain on my right side. She immediately gave me a referral and an appointment for an MRI and a CT, both of which I’d had before. They came back negative. Instead of giving up, however, she had me come back in. She sat with me for hours, going through my medical history. She insisted on an ultrasound, which came back clear. She did extensive bloodwork. Nothing. She ran… I can’t even remember all the tests. Nothing. Frustrated, I was willing to give up again, but she wasn’t. She insisted on another ultrasound, and when I resisted, she called in the portable ultrasound tech to do it right then and there.
It’s funny how one little thing can be a catalyst. That ultrasound showed a cyst on my right ovary. It was a pretty big cyst, the size of one of those small oranges, but borderline as far as actually needing to be surgically removed. However, it was enough to demand a referral to a specialist. Not just a gynocologist, but one who specializes in reproductive issues. And that small difference in specialties would change everything.
I’m at 2000 words on this post, so I think I’ll stop here for now. The woman who gave me my life back deserves her own post. Sorry this is so long, but for anyone who doesn’t have endo, I want you to understand just how hard it was to get an answer, everything that someone has to go through, and how endo might kill you, even when they say endo won’t kill you.