My endometriosis story with a top excision surgeon in the US

This is a review I write for this doctor. He founded the Endometriosis Foundation of America and he held annual medical conference where doctors/researchers come together to share the latest findings. He also has research projects going on trying to uncover the roots of this disease. Yes I need to spend a lot of money to get the treatment since he is out-of-network in the US. However, I see this as an investment for my future and consider the money WELL SPENT !

Below is my personal experience:

I have been lucky that up until age 25, I have not had any medical problems and even my period, which began at age 13, was always like a breeze - no pain, no heavy bleeding. I was athletic, happy, and worry-free.

As I turned 24, I noticed that I started to feel quite nauseous during period (still no pain though). Progressively, the nausea started to expand beyond period and I could feel sick for the entire month. At the same time, I start to feel exhausted easily. I was diagnosed with anxiety based on these “physical symptoms”.

Turning 25, my periods start to get painful. At the beginning, it was mild pain. Within 2-3 cycles, the pain became unbearable and I would struggle with going to school.

I am a full-time PhD student in a top Ivy League school and I am in charge of one major research project. The daily pain/nausea I was in made it very challenging for me to fulfill my duty.

In September 2015, 3rd cycle of my painful period, I was determined that there must be something wrong with me since I have never been in so much pain my entire menstrual life, and I don’t think girls I know face this issue. I went online, typed in my symptoms, and immediately the word “endometriosis” jumped out at me. I have never heard about it and knew nothing about it, but I made a self-diagnosis immediately as the symptoms match perfectly: painful periods, painful bowel movement, and painful sex. Within a few days, I browsed everything I can find online about this disease – both medical journals and people’s discussion in forums.

I was actually consumed by despair upon discovering the impact of the disease, which possibly involves both chronic pain and infertility. I felt doomed.

I went to see my primary care doctor at my university and coincidentally, she had endometriosis since her 20s as well. She shared her story, as well as her two unsuccessfully laparoscopy experience decades ago. Strangely, she was stage 3 but her symptoms were well managed by homeopath treatment. Desperate for a relief, I tried the homeopath regimen she used but to my disappointment, it did nothing for me. She referred me to a general gynecologist, who diagnosed me with endometriosis and booked me in for a diagnostic procedure in November 2015.

In the meantime, I had endoscopy and colonoscopy done as well – both clear and I was diagnosed with irritable bowel syndrome.

At that point, I have not fully grasped the distinction between laser and excision surgery. As my research about the disease and the treatment continued, I came upon Dr. S's website and read the information there as well as other women’s testimonials. I finally feel empowered and well-informed about the disease. Soon, I cancelled my procedure with the other doctor and promised myself that I would either have no operation or the best one in the world.

I booked to see Dr. S in Dec 2015. However, my primary care doctor argued with me for going out-of-network for such a “routine procedure” and I was “referred” to see another gynecologist who diagnosed me with severe anxiety and pelvic floor disorder with possible endometriosis. She put me on extended birth control pills and I was doing physical therapy weekly.

My meeting with Dr. S was postponed till April 2016 since I need to give time to see whether the pills would help me. It helped me in the sense that I have less cycles. However, the pain I felt when I came off the pills every three months was 10 times worse than before and the daily pain/exhaustion was not lessened either. At this point, none of the doctors I saw had any solution for me. Well, I am already on the pills.

I did not postpone my meeting with Dr. S any further and saw him in April, he examined me and diagnosed me with endometriosis and sent me for MRI.

I did not hesitate when he proposed to do a laparoscopy which was carried on June 10, 2016.

Dr. S excised 24 lesions, all of which were tested positive for endometriosis from pathology. I was lucky in that I caught my endometriosis early and they are superficial and did not impair any organs. What would happen if I wait longer to take them out? What would happen if I went in with a doctor inadequately equipped with the skills and patience to excise them all?

My recovery was easy, I did have pain for a couple of days but I also took the subway downtown to shop for furniture on day 5. I slept a lot but the stabbing pain from the depth of my pelvis is gone for good. Today I saw Dr. S and his team for post-up check-up and I am hopeful about my future. If I can travel back to Sep 2015 when I diagnosed myself with consternation, I would tell myself not to be scared since there is quality treatment out there.