When I was growing up, we always did what the doctor said. We had no reason to even consider needing to advocate for ourselves. Why? Because he was the doctor, and the doctor always knows best.
But what if they don’t?
I now work in healthcare as an adult. I have been a pediatric pharmacist for six years at a large, nationally renowned healthcare institution. One of the first things I learned when I started my career? Doctors don’t know everything. And as a pharmacist, it was my job to call them out on it, whether it be an intern in the first month of their residency or a seasoned staff physician who had been working for 20 years. I needed to advocate for my patients because, as the “drug expert” there are honestly some things I know about medications that doctors don’t know. That’s why there are pharmacists!
It wasn’t long before I learned that the same truth still applies when you are the patient: doctors still don’t know everything. And sometimes, if you want the best care or the right answers, you need to advocate for yourself.
If you’ve been following my blog at all, you probably know that I have endometriosis. I’ve told the whole story from start to finish in some of my first blog posts. Yet there is one aspect I didn’t really go into a lot of detail on- how I advocated and continue to advocate for myself to get the best treatment.
In the spring of 2014, I was admitted to the hospital for what was diagnosed as a tubo-ovarian abscess or a hydrosalpinx. Basically, an ultrasound was read as showing something in my right Fallopian tube that needed to be treated with IV antibiotics (and pain medication, because let me tell you, it hurt so badly I thought I had appendicitis.) I was discharged on two weeks of oral antibiotics, but after a few days I wasn’t feeling any better, so I had a strong suspicion that I didn’t actually have an infection, otherwise I should have felt better on the antibiotics. Seeking answers on my own, I turned to the internet (which isn’t really the best source for medical information, but what can you do) and sought answers for what could cause a blocked Fallopian tube. When I read about endometriosis and its symptoms, I put the pieces of the puzzle together and realized that must be what I had. I made an appointment with the OB/GYN who had overseen my care in the hospital to discuss my suspicions with him.
At the appointment, I said I still wasn’t feeling any better than when I had been discharged. Then he dropped a bit of a bombshell when he said that he never thought I actually had a tubo-ovarian abscess or hydrosalpinx. He said he knew it was a crap diagnosis, but it had to be ruled out. Slightly miffed at this point, I pulled out my advocate card and brazenly announced, “I think I have endometriosis.” After reviewing my symptom history, he actually agreed with me and suggested proceeding with a laparoscopy. Now, would he have suggested surgery had I not brought up endometriosis? I don’t know. He actually probably would have, since I was still having pain. But by having done my homework, we were now both on the same page with regards to my care and the diagnosis we were suspecting.
Obviously, I was correct in my assumptions. I was diagnosed with stage II endometriosis. But the surgery really didn’t help me feel better either. At my follow-up appointment a month after the surgery, he was making excuses about “microscopic endo” and saying I could either do Lupron (to which, as a pharmacist, I say HELL NO) or take pain meds until I got pregnant. I left the office feeling defeated. I wallowed in self-pity for a few weeks, but when I started to get even worse, to the point that I could barely get out of bed, I knew something was still wrong, I just had to find out what it was.
I turned back to the Internet. Through Facebook, I found an endometriosis support group with lots of members and good information about the disease. It was there I first learned about excision surgery and how it is the gold standard for treatment of endometriosis. What I had done, ablation, isn’t effective because it only burns off the surface of the endometriosis lesion, leaving cells behind underneath to continue to grow. Excision cuts out the cells completely, undermining them and removing them all from underneath. (Think like removing cancer.) I immediately knew I needed to have this done. But where? It didn’t take long for me to stumble across the Center for Endometriosis Care in Atlanta. I read patient testimonies on Facebook and found a YouTube documentary explaining the necessity of excision surgery for endometriosis and featuring the CEC. I instantly knew this was where I was going to go to have excision.
Here is where being an advocate comes in again. I had to convince my husband that this was a good idea. When I first told him about excision and getting a second opinion at a place in Atlanta, he was skeptical. Plus, we knew we’d be paying entirely out of pocket because our health insurance has zero out of network coverage (basically, if my employer can’t fix it, you don’t deserve to have it done.) But David could see how miserable I had become because of the raging endometriosis within me and agreed to watch the documentary. As soon as it was over, he said, “You need to go to Atlanta. I don’t care what it costs.”
The next step was convincing our parents. Not that we needed their explicit blessing, but it would be nice to have them be on board with my care. I sent an email explaining excision and our plan and a link to the documentary for them to watch. All expressed skepticism initially, saying websites could put whatever snake oil cures they want to out there and make it look like the Holy Grail. I patiently waited for them all to watch the documentary…and one by one, the responses were unanimous: go to Atlanta!
I had excision surgery performed by Dr. Sinervo at the CEC in October 2014. We indeed paid every penny out of pocket, but to say it was worth it is the world’s greatest understatement. I had excision surgery performed by one of the world’s most highly skilled excisionists. Yes, we traveled over 700 miles to get there and sacrificed a lot to be able to do it. But by the grace of God working through Dr. Sinervo’s hands, I got my life back. And I am one of the lucky ones to also have additional proof that the excision worked. I had surgery again with Dr. Sinervo last month for what we thought were adhesions, but ended up being a hernia (see The Day Before the Day Of and Always A Zebra for that story). He was able to confirm that almost two years later, no endometriosis was to be found. So my endo is gone. I believe it will stay gone. I believe I am as close to being cured of an incurable disease as one can be. All thanks to Dr. Sinervo!
What would have happened had I just believed that what my OB/GYN told me were my only options? Had I tried Lupron, I could have experienced horrible and possibly permanent side effects. And I still would have endo. Had I managed to get pregnant despite the pain of intercourse, I would have a baby, but still have endo. I would probably be looking at another ineffective surgery by now that would just do the same thing of not really doing anything.
It’s ok to tell a doctor no. It’s ok to find another doctor, or another, or another until you get effective treatment. Stand up for yourself! Say no to ineffective and harmful “treatments” and pursue treatment that is most likely to lead to success. You are in control of your life. And it’s the only life you have. Advocate for yourself. And be well.