The National Health Service of England has a list of the top 20 most painful medical conditions. I have two of them – endometriosis and kidney stones. Of the two, the endometriosis pain has been worse for me. Pain is never a competition – yet while it took me one single day to be diagnosed with kidney stones, it took me 20 years to be diagnosed with endometriosis.
Middle School and High School
When I was 14, pain started keeping me from school every month. My mother told me it had been the same for her when she got her period, and my twin sister went through a great deal of pain herself. I thought it was normal … but it began to interfere with life. My period was erratic – I’d go 2 weeks, then 7 weeks, then 5 weeks between cycles. Every GI issue possible would show up at random – I spent a lot of time trying to alter my diet but nothing (aside from avoiding meat) seemed to help. When I was 17 I was put on birth control to stabilize my cycle timing and it was incredible – not only did it make my cycles more predictable, it drastically cut the pain I was experiencing each month down to a manageable level. It didn’t last.
I went off to college and the pain got worse, even on birth control. Don’t get me wrong – the birth control helped, but it didn’t keep the pain from getting worse. Crushing fatigue joined the party and I began to develop multiple severe head colds every winter. When I sought medical help, I was given STD tests and pregnancy tests, despite explaining they weren’t necessary. Meanwhile, my complaints were dismissed and I was routinely told a mix of the following:
- I was still struggling to get used to the “new experience” of having a period.
- All women have pain and I was just bad at dealing with it.
- There’s nothing wrong in my test results so there can’t be anything going on.
- It must be in my head, or I must be exaggerating.
As I moved into graduate school, my symptoms became weekly. To make it through the day I began wearing stick-on heat patches under my clothing, taking the max dose of ibuprofen, a little more often than recommended, and avoiding tight clothing on bad days. I never knew what to expect from my body – the fatigue, the GI issues, the “endo belly” (a painful bloating that makes you look 5-6 months pregnant), the regular illnesses and above all, the persistent pain – they began to isolate me. The worse my symptoms got, the more I internalized the things my doctors were telling me. I believed them, that I was weak. I believed them, that this was normal. I believed them, that I had to work harder and be stronger – and I was ashamed and terrified that other people would find out how deficient I was. My goal became proving that I could be as strong as everyone else while not letting them know the effort it cost me.
Post-graduate school, I stopped dating at 27 after an attack began on a date and my companion was not understanding. At work, I stopped taking vacation days, knowing I would need them as sick days – my head colds were now lasting 20 days and ending in a double ear infection each time. I would try not to react as stabbing pains hit me, at any time, during the day. I would go home early when I got my period, crawl under a heated blanket, pull on an extra heating pad and go to bed at 5 pm – still waking up exhausted the next day. Like many others, I spent a lot of time on the bathroom floor while pain and nausea washed over me, simultaneously feeling too hot and so cold. I bought a house and found a mental refuge in learning how to fix it up. Having a hobby that I could focus on helped take my mind off the pain and was another way to show I could be strong like everybody else.
As I entered my early 30s the pain progressed to daily. Multiple times a day it felt like an invisible assailant was stabbing me in the abdomen. It’s hard for people to comprehend that it wasn’t just the pain – it was *violent.* I would look around the room as though I might see someone wielding a knife. Around this time, my twin sister had a surgery with an OBGYN for a different issue. As part of her pre-op research, my sister came across ‘endometriosis’ and asked her surgeon about it. The surgeon said they could treat it. After the surgery we were told that no endometriosis was found – but my sister’s pathology came back positive for it. Unfortunately, this is how we learned that true experts, who treat endometriosis effectively, are rare.
My sister posted about her surgery to social media and a friend from college, Beth, reached out. Beth helped my sister find Nancy’s Nook, a Facebook group dedicated to endometriosis education for patients. She also helped my sister get in touch with Dr. Heegaard, a local excision expert. Six months after her first surgeon told her she had no endometriosis, Dr. Heegaard excised stage 4 disease in a second surgery on my sister. Talking to Dr. Heegaard in the family room was a completely different experience than the first surgery. He explained to my parents, my brother-in-law and I what endometriosis was and what the symptoms were. Listening to this kind man talk about how patients are often dismissed or told it’s normal, I began to realize what I was experiencing was likely endometriosis.
I was terrified to see Dr. Heegaard – by that point I wasn’t sure I could take another doctor telling me it was all in my head and I was weak. My sister went with me to my appointment, and Dr. H spent an hour interviewing me about my symptoms and history. It was the first time I ever felt heard, seen and listened to by a doctor. We did an ultrasound and he pulled it up in the room. He looked at a 3-inch cyst and said, “Heather, that’s an endometrioma.” I don’t know exactly how to describe what it feels like to go from thinking you’re incredibly weak to realizing you’re actually strong in the span of seconds. I went from relieved (he believes me, there’s proof), to elated (there was a reason I hurt all those years) to bright anger (why had I believed all those doctors? how could this have happened?). Dr. H felt the best thing to do was go in and excise the endometriosis and we made a plan for surgery.
Like most endo patients, I spent the night before surgery worried about two things: first, that Dr. H would find nothing and I’d be back at ‘it’s all in your head,’ and second, that the surgery would somehow make my pain worse. At surgery, I was a stage 3 case. My endometrioma (which I’d named Brutus) was removed and my ovary put back together. One of my uterosacral ligaments was removed, and endometriosis covering the bottom of my pelvic cavity like a bowl was excised. We put in an IUD while I was under. I remember how deeply validating it was to wake up and be told I had this condition, and then to see photos of it from the surgery. I had bright red, angry spiderwebs inside me – and I knew they were gone.
Unfortunately my second fear, that the pain would get worse after surgery, came true. One of my other surgeons had told me “The body’s reaction to pain is tension,” and after 20 years with a pain generator sitting on top of my pelvic floor muscles, I had pelvic floor dysfunction. Imagine the worst muscle knots you’ve ever had in your neck and shoulders. Now picture those same knots in your pelvic floor. It hurt every day, all day – I couldn’t believe that I hadn’t felt that pain before excision surgery, but the endometriosis pain was so all-eclipsing that I hadn’t. A month post-surgery I started a second birth control, a contraceptive ring. Two months post-surgery, I developed hip pain that left me in agony.
Roughly 20 times a day my left iliacus muscle, on the inside of the pelvis, would spasm so tightly it felt like my a rod was being run through my hip, breaking it. I couldn’t breathe. My balance was gone. I doubled over in meetings. Narcotics did nothing. I would look down shocked there wasn’t actual visible physical trauma. Mentally, the pain took 2 weeks to break me. The next two months were the worst of my life and I hope never to feel that kind of pain again. My pelvic floor physical therapist, Dr. Bethany Hansen at Viverant, kept me going. Having already had the surgery that was supposed to help and winding up in even more pain, it took everything I had to do another day – to get up and try while knowing torture awaited. I continued trying to hide the pain. At one point a friend from high school and her daughter stayed overnight at my house – I remember thinking “If I took the whole bottle of narcotics, it would make the pain stop – and at least my sister wouldn’t have to find my body.” It was only a moment and I knew I loved my friend and her daughter too much to put them through that, but what scared me was how logical it was. Not emotional or unstable – but doing the math around the value of a life of excruciating pain with no promise of an end versus being done and having peace. Bethany, telling me every week in physical therapy that “we haven’t even begun to run out of things to try” gave me hope that there could be a 3rd option. She was right.
After charting my pain, I decided to stop the contraceptive ring and got about 30% better. Talking it over with Dr. H, we pulled the IUD and I got another 50% better. Eighteen months of pelvic floor physical therapy and Pilates physical therapy helped me go further. There’s still pain, but it’s nowhere near as bad as it was. As my abdominal muscles got stronger I regained my balance so I could put my shoes on without falling over again. I’m on a different form of birth control that doesn’t cause me issues. I can do cartwheels, take the stairs, go to the gym, and dance again. I haven’t had a head cold or double ear infection in the 3 years since surgery, and I have more energy than I ever thought possible. My life has changed, and I married a wonderful, supportive man who understands chronic pain. I continue to work on my health – consulting with a dietitian, trying tactics like Mayan abdominal massage, and entering the state’s medical cannabis program. When I think about the 2 decades of my life I lost, I’m still angry about how I was treated. What if someone had just *believed* me when I was 14? If they didn’t know what was wrong with me, why couldn’t they say so instead of telling me I was weak and deficient? How much money did I spend, only to be harmed by the care I received? I’ve decided to use that anger as fuel.
For someone who was once so isolated by this disease, I’m now a part of a growing, determined patient community that’s fighting for a better path for ourselves and others. I’ve come to think about this condition with a systems mindset. Yes, my doctors misdiagnosed and mistreated me – but they also face patient quotas that rush office visits, may have poor quality education on the condition, and insurance coverage / denials encroach on treatment decisions – plus our healthcare system isn’t set up for chronic illnesses that need teams of specialists. As a society, we exacerbate everything by telling young girls that periods should be painful, that their feelings about their own bodies aren’t valid, and that talking about reproductive topics is taboo. Politically, we’ve turned basic treatments into talking points that threaten real harm to patients who depend on them, like birth control. Research is woefully underfunded for the population size and impact of the disease. Awareness about endometriosis is still often limited to thinking it’s just “bad cramps.”
Forward movement in any part of the system is helpful. As endometriosis patients get more organized, as we become our own advocates, as our remarkable expert caregivers speak out and encourage us to do so too, the potential for a better path gets stronger. I’m so proud of the entire endo community and especially of my fellow patients, whether you’re active in advocacy work, privately advocating for better care for yourself with your doctors or simply processing the physical, emotional, financial, social, and/or reproductive trauma this disease causes – so you can live your best life. Our stories are so similar, yet so different. This disease has made me stronger, braver, more compassionate and more resilient. It’s taken so much. But it’s also given me all of you. Thank you for being my fellow warriors. I hope to see you at the Minnesota EndoMarch at the end of the month! I’m proud to partner with the Minnesota Endo Warriors on their peer-to-peer fundraising campaign with the hope that together we can better education students, teachers and families on how best to support their young endo warriors. You can support my efforts here.
Countdown to the 2020 Minnesota Endo March