Staci vs. Endo: Round 2

One of the biggest problems with endometriosis is the severe lack of doctors who can properly treat it. There are only about 200 endometriosis specialists in the WORLD, even though one in 10 women has it.

This is why most women who have endometriosis end up having more than one surgery to treat it and why I experienced no relief after my first surgery. My doctor, perfectly capable of prescribing birth control pills and delivering babies, simply wasn't trained to properly treat endometriosis. Like most general gynecologists, she performed an ablation surgery, burning away the rogue tissue.

But what I later learned is that ablation surgery only removes the tissue she could easily see. It's akin to melting the tip of the iceberg but not the majority, which is underneath, attached to and continuously growing over my organs. Additionally, it caused scar tissue and adhesions, worsening my pain. 

Though unrecognized as a different procedure by the American College of Gynecologists and insurance companies alike, excision, not ablation, is an endometriosis patient's best chance at long-term relief. It's not a cure, but a surgeon who is specially trained to cut away, not burn, the endometriosis lesions and adhesions can give a patient a better quality of life, improved fertility, and a chance at not having to have surgery every other year. 

So when my symptoms returned in 2016 and rapidly worsened, I didn't even bother with my general gyno. With the help of my friends at Endo Warriors and Nancy's Nook, I did extensive research and found the closest specialist to me who was approved by both groups was in New York City. So in April of 2017, my mom and I took a day trip up for a consultation.

I had diligently sent this new doctor all my records, and in turn, she had diligently read them all before my visit. But the first thing she did was ask me to describe my experience to her. It shouldn't have been a surprise, but I immediately began crying as I recounted not what was in my records but my lived experience of endometriosis up to that point.

I experienced all the usual emotions I have become accustomed to when talking about endo -- self-pity, frustration, sadness, rage, hopelessness -- but for the first time when talking to a doctor about it, I experienced a flood of relief and validation. She had tissues at the ready and she assured me that by the time women got to her, they were usually at the end of their ropes and crying was normal. She didn't suggest antidepressants (like many doctors before her had at the first sign of tears), and she didn't tell me she was stumped since she couldn't prescribe birth control to me. Rather, without minimizing my experience, she told me that my story sounded like a textbook case of endometriosis -- complete with failed surgeries, stymied doctors, and ever-worsening pain.

She's the one who explained why the ablation surgery didn't work and why Lupron was not the "cure" I had been promised. With a five-minute manual exam, she told me my uterus was being dragged back and to the left by endometriosis tissue and that I was a good candidate for another surgery. She also said my pelvic muscles were extremely tight from years of pain and recommended pelvic floor physical therapy both before surgery and after.

The catch was that my doctor did not participate with any insurance plans. The reality is most specialists do not. They spend years training to be able to operate on any number of organs without knowing what they're going to find when they begin since there is currently no imaging technology that can reliably detect endometriosis. The ACOG issue mentioned previously is a huge problem because this surgery is not at all similar to ablation, and insurance companies should not be allowed to compensate it as such. When they do not compensate the more difficult surgery properly, it gives specialists no incentive to participate with insurance plans.

Me during this period of time. Except without the smile.

But where does this leave endometriosis patients? Either suffering or in medical debt. Luckily, I am in medical debt only to my generous parents. When I found out that the surgeon charges $15,000 for the surgery up front -- two weeks before without taking credit cards and without being willing to work out payment plans -- I called my parents crying and told them I would not be able to have the surgery because I couldn't afford it. This $15,000 did not cover hospital fees, anesthesia, the appendectomy I ended up having while I was under, the numerous appointments before and after, the preop physical, the physical therapy, the MRI and ultrasound, the travel to New York and back, etc. etc.

But the financials of endo and the battle I am STILL doing with UnitedHealthcare is a story for another day.

What followed my consultation was weeks of tests, appointments, trips to New York, extreme stress and anxiety, and tears. In short, I was a fucking wreck. Nowhere close to forgetting my breakup after my first surgery, my current boyfriend, Scott, was constantly reassuring me he wasn't going anywhere and he didn't feel burdened by everything my chronic illness and upcoming surgery suddenly demanded of him. My parents were always on the phone with me, telling me they weren't worried about me paying them back at all -- they just wanted me to be happy and healthy again. My best friend was on Gchat with me every day when I just wanted to quit and not have the surgery, giving me pep talks about persisting through the stress and prep, reminding me surgery was in my future whether it was now or later, and it was better to get it finished now. My friends in NYC made the trips back and forth better, meeting me for meals and saving me hotel expenses.

Finally, the time had arrived. The Friday night before I headed up to New York, Scott and I went shopping for the bowel prep items I was to take the day before the surgery. Nothing says romance like a bottle of laxatives, an enema, and Desitin.

This is how you treat yo'self, last-meal style.

We spent Saturday getting drinks and food with my friends; sometimes I even forgot the reason I was there and could pretend it was one of my usual NYC visits. Sunday was Father's Day, and my parents and brother joined us. We had a Father's Day brunch, visited the 9/11 Memorial, and then I had a Father's Day dinner of lemon-flavored laxatives while I pushed Scott out of the hotel room to go meet up with a friend.

As luck would have it, the laxatives took effect when Scott RETURNED, and I spent the whole night running to the bathroom. My surgery was the first one on the books for that Monday, and the laxatives did not appear to be finished with me by the time we arrived at the hospital. 

I seriously started to wonder if it was possible to shit yourself on the operating table whilst under anesthesia. (I asked my surgeon if this was possible. She patted my shoulder and said everyone worries about this but notably did *not* tell me if it was possible or not.)

Soon it didn't matter.* I was out. 

When I woke up in the postanesthesia unit, my abdomen was incredibly sore. My surgeon had made four incisions this time and had called in a general surgeon to remove my appendix, which she said looked "thickened." (Two for the price of one! Except not literally, they charged for both.)

I didn't have my glasses, and I couldn't see anything, which was just as well, since all I wanted to do was sleep. But at some point, the nurses wanted me to go to the bathroom, so they could measure my fluid output. Two nurses helped me up, and suddenly I felt like I was going to throw up. The pain in my abdomen was so extreme, their voices began to sound far away and my vision tunneled. I don't know what I said to them, but they put me back in bed before I passed out. I had never passed out before.

And when they gave me more meds and took me to the bathroom sometime later, I peed into a measuring cup with a nurse in the room with me. I had never peed with someone else in the bathroom before. The indignities of medical care are boundless.

The rest was a blur. At some point they transferred me to another room where a television was on with news about Donald Trump. Someone brought carrot cake in for the nurses. I was waiting for the surgeon, and at some point I heard the nurses say "How long can this go on for?" in response to the news. At that point I said something belligerent and possibly profane about Trump. The nurse offered me some carrot cake.

My surgeon came in and told me she was pleased with the surgery. My ovaries weren't compromised and the only extra organ she had to remove was my appendix. She was confident she had gotten ALL of the endometriosis tissue and was sending it all to be biopsied. 

I was adamant about going home that same day. I didn't want to spend my first night postop in a hotel room, and since the surgeon cleared it, Scott and my mom drove us back. Scott pulled the car around with my favorite tea, pastries, soup, flowers, and cough drops since he anticipated my throat would be sore from the breathing tube. I've never been afraid he would pull a Nicky since.

My recovery was significantly worse than it was following the ablation surgery. I woke up several nights in a row with stabbing pains in my vagina that my doctor said were likely pelvic floor spasms. I couldn't manage a five-minute walk around the building until about a week following surgery. And I couldn't work out until five weeks later (despite having tried to negotiate pre-surgery to get the doctor to tell me I could work out two weeks after).

Now it's been exactly a year. My quality of life has significantly improved. I rarely have pain in between periods, and when I do, it is manageable. I've gone through several periods without needing prescription painkillers, though I am not (yet) rid of them for good. I've progressed in physical therapy (which I will write more about at length soon), and I've returned to my previous levels of physical fitness.

But ultimately, endo IS still a chronic illness. While excision surgery has helped me immensely, it is not a cure, and no one ever promised it would be. I think about my endo every day. I am learning more about managing my symptoms with dietary and lifestyle changes and researching everything I can about balancing my hormones. I still have constant anxiety about needing surgery again; every painful period comes with it insomnia and depression, not just from the pain but from the paralyzing fear of the prospect of another surgery, another $20,000, an ugly new normal, a lifetime without relief. I am STILL battling with the insurance company to get them to reimburse me *some* portion of that $15K since ultimately, their network has failed me by having no specialists in-network (that's a real treat, which I promise to write about at length sometime soon).

But now that my incisions are healed and I am healing internally, I'm newly motivated to work toward not just improving my symptoms, but fixing the system for other women. No one should feel like an isolated freak that doctors don't know how to fix, especially if she has a disease that is actually quite common. No one should have to choose between debt and debilitating illness. I am a white, middle-to-upper class woman -- it's not lost on me that if it was *this* difficult for me to receive care, it is a thousand times more difficult for someone who is more marginalized. Frankly, no one should have to cross state lines to get adequate care. Women should never be dismissed and told their pain is normal. 

So I'm learning as much as I can, never shutting up about my period and endo, and locally have created the Baltimore Flow for women with endo and related illnesses to find credible information, resources, companionship, and advocacy. And of course, I'm running the New York Marathon and raising money for the Endometriosis Foundation (please donate!).

Sure, endo is a chronic illness, but it's also now my life's purpose, for better or worse. Anxiety about worsening symptoms, watching the precarious balance of my hormones, and dealing with monthly pain is my new normal, at least for now. But I've learned about myself -- my body, my resilience, my support network. And I have so much more to do and tell you about.

So thanks for coming along for the ride.

xo,
S

*No one ever told me if I shit myself on the operating table.