How my pain psychiatrist led me to an endometriosis diagnosis.

It was early 2018 when I began seeing a psychiatrist for chronic pain, CPTSD, and MDD. We were a few months into working together when discussing the mind-bending pain in my leg that went from glutes to toes. Sciatica was the obvious name for it, but some of my doctors and I thought it went deeper than that.

In late 2017 I was diagnosed with piriformis syndrome. I was undiagnosed by a different doctor in the spring of 2018. But my pain specialist, psychiatrist, and I all believed I was experiencing piriformis syndrome, whether the hip specialist agreed or not.

Whenever anyone has asked about my pain, I point to the epicenter, in the center of my left butt cheek. I've described more times than I can count how the pain radiates down my leg and into my foot.

My pain psychiatrist casually mentioned that he'd had patients in the past, also female, with piriformis syndrome. They also had endometriosis.

When my psychiatrist said the word endometriosis, I honestly didn't know much about it. I was reasonably sure it was related to my lady bits, but I wasn't sure to what extent or how I would know I had it. I said, "I haven't ever been told I have endometriosis." He said, "Well, you're 37 now, so you'd probably know if you had it."

Here's the thing: I had been complaining of horrible menstrual cycles for years. I had been to see an OB-GYN in late 2017 or early 2018… it's all a blur. But that guy diagnosed me as fat, told me that "birth control can only compensate for so much" and advised me that "easting the right foods" was "about 80% of the equation."

Over the years, I'd heard all kinds of things. One persistent (and consistently male) professional opinion was that if I refused to stop getting older, and refused to have children, that the price I had to pay was more painful menstrual cycles. I said to one doctor, "So, what? This is God's way of punishing me for not employing my baby box?"

I digress.

The point is, almost 200 million women worldwide have endometriosis, according to WebMD. Why, then, is it still such a mystery? Why are so many women living with endometriosis without ever having a diagnosis, and why are doctors so blind to the symptoms of this incredibly common (in the grand scheme of medical conditions) diagnosis?

My female friends with endometriosis would likely tell you that if this were a disease that impacted the penis, there would be a cure by now. I'm not entirely sure they are wrong.

The only way to definitively diagnose endometriosis is with an exploratory abdominal laparoscopy.

Endometriosis is a condition where the tissue in your uterus (endometrium) grows outside of it and gloms on to other organs. You can't see that tissue with tests like CT scans or ultrasounds, so when doctors have already run all of the non-invasive tests that they can with no results, they may look for endometriosis.

But how did I get from point A to point B?

After my spine surgeries in 2019, my back was improving by leaps and bounds. I began outpatient physical therapy in December 2019 and was off of my walker by January 2020. In February 2020, I was able to kind of step up the physical therapy and started working out in my sessions. As I write this, I am up to working out 6-7 days a week. I work with my rehabilitative trainer twice a week, and the rest of the week, it's on me to get to the gym and do what I need to do.

While my back was improving leaps and bounds, though, my left leg was only getting worse. I had developed edema in my left leg in November 2018, and after a trip to the emergency room and vascular ultrasound, I didn't have blood clots, but no one was sure why else my leg might be swelling. When the swelling got worse, so did the pain. I begged my partner to cut off my leg. (Several times.)

Additionally, my abdomen had become large and distended, pushing up into my chest. Eating was a challenge because 3-4 bites of food were causing me to feel overly full, and I had acid reflux suddenly. My digestive system seemed frozen; nothing was moving. I was drinking laxatives every day to no avail.

So, I kept searching for answers. I talked with my primary care doctor, pain management specialist, and therapist, and opined about whether my psychiatrist (now retired) may have been onto something.

I got a referral to a female OB-GYN in July of this year, and we began the process of running relevant labs and tests.

Endometriosis isn't something you may know you have by age 30, because it doesn't always strike when you're young.

By the end of July, after normal labs, pelvic CT, and pelvic ultrasound, it was time to make a move. I chose to go ahead with the exploratory laparoscopy and, while they were in there, I asked for a uterine ablation and for my tubes to be removed.

My OB-GYN agreed; it seemed like something needed to be done. Why suffer so much with my awful menstrual cycles (which often left me hunched over and having difficulty walking for days) if I didn't plan to have children?

In my case, as discovered in surgery last Friday, I also had a tumor growing in my uterus and polyps all over it. Additionally, there was a uterine septum dividing my uterus in two! I had never heard of a uterine septum and had to give it a Goog when I got home from surgery with my mom and started processing everything.

Because of all of the trauma that my uterus had to endure to remove all of that excess tissue, the tumor, and the polyps, the surgeon was unable to perform the uterine ablation. The uterus is sensitive, and if you do too much at once, there is a risk of puncturing the uterus and perforating the colon. So, I'll have to go back for further corrective actions.

The gallery below is a clear pictorial view of my distended abdomen, pre-op, verses my abdomen post-op. The pre-op abdomen was disproportionate to the rest of me as I’ve lost 40+ pounds since February of this year.

Spoiler alert: There is also no cure for endometriosis.

Pregnancy will not cure endometriosis. Endometriosis can make it very difficult to get pregnant and carry a pregnancy to term. A partial hysterectomy will not cure endometriosis. It does significantly decrease the chances that endometrial tissue will grow back if you don't have a uterus.

On September 17, I will return to my surgeon's office to discuss the surgery and the next steps. We will be scheduling the next surgery at that time, in which she will either perform the uterine ablation or remove the uterus altogether. I received news this week that the pathology came back on everything, and I do not have cancer.

I'm also happy to report that I haven't had the chronic sciatic nerve pain since the surgery and that my legs are back to being the right size, even when I get up and do things. I am very hopeful about how this surgery and the next will impact my quality of life, long-term, and how much easier my rehabilitation and health management will be with all of these issues corrected.

Once again, I'm one of the lucky ones when it comes to medical gaslighting. I'm still alive to tell the tale and don't see any reason why I won't be for some time.

Thanks for indulging me.