Brittany's Endometriosis Journey - Finding The Right Doctor, Advocating for Yourself & Having a Hysterectomy

The Disease that changed my life forever…

For 15+ years I lived with painful periods. When I was in the 8th grade, I experienced severe pelvic pain that led my mother to take me to the ER. After a week of going back and forth to different doctors, I ended up at a Children’s Hospital where they informed me that I had a cyst that had ruptured. At that time, it was recommended that I go on birth control to help with any future cysts. 

For years I experienced painful periods that left me using heating pads, taking Advil and Tylenol, and laying on the bathroom floor crying. I was made to believe that these were “normal”, but a lot of my friends never seemed to have painful periods like myself. Since the 8th grade, I have been on a handful of different birth controls. 

After being on birth control for 15+ years, and making the decision with my husband, I decided to go off the pill to start having kids. 

Luckily, my annual appointment with my OB was getting close and I told her about my decision. She recommended some vitamins to start taking, informed me that I was healthy, and next time she saw me I would be pregnant. 

After about 4 months of being off the pill, I noticed some changes with my body that brought concerns. After contacting the doctor, I was told it was all normal. Then I experienced two painful periods that seemed to progressively get worse each time, leaving me in severe pelvic and leg pains, sweats, sick to my stomach, and barely able to walk. During these periods, I started missing work, which I realised something serious could be going on. I remember standing in my living room one day thinking that something was seriously wrong with my body and that I may never be able to have kids. I then decided to go to my OB to get checked out. I wasn’t able to see my OB at that time, but I did see a Nurse Practitioner that diagnosed me with PCOS. She also ordered an ultrasound too. At this time, I was experiencing daily pelvic, leg, and lower back pain.

The ultrasound was extremely painful. The Tech informed my husband and I during the ultrasound that she was unable to find my ovaries or tubes. I was also told by the same Tech, that I definitely had something going on. Later that day, I was scheduled to see my OB for the ultrasound report, which brought more surprises. She informed me that I had an infection in my tubes and was going to admit me to the hospital. (Keep in mind, I had never heard of having an infection in your tubes before) Luckily, there were no beds available at the hospital. I received two antibiotic shots that were given to me at the doctor’s office and left with prescriptions for more antibiotics. After a few weeks of still experiencing pelvic and lower back pain, I was scheduled for a CT Scan. The CT Scan showed that I had a cyst on each ovary and my doctor wanted to give it a few weeks to see if the pain would ease up.

 

One day I ended up leaving work early due to another severe painful period. I took a pill that my doctor had prescribed previously for me to help with pain (which was a low dose pain pill), but by the time my husband got home, the pain was getting worse. The medicine was not helping at all. As we waited for my doctor to return our call, my husband began preparing to take me to the ER. Luckily my doctor called and was able to prescribe me some stronger pain medication, and also decided a Laparoscopic surgery was the next step. This by far was the absolute worst period I had ever had. I remember waiting for my husband to get home with the pain medication and screaming in a pillow wanting the pain to ease up. The next day I scheduled my first surgery for two weeks away.  

 

December 21st, 2022 came fairly quickly. My husband was with me for my first surgery. My Mom even arrived about a minute or two before I was taken back to “Holding”, which I knew right then God was there with us. This was my first surgery ever, which left me terrified. This was the worst experience ever. I waited 3+ hours in “Holding” which made my emotions much worse. I even remember watching King Of Queens on the TV( on the ceiling) and seeing them eat a Thanksgiving meal. Which was absolutely cruel to lay there and watch since part of my prep was not being able to eat before surgery. After surgery, my doctor confirmed that I had Endometriosis, but she was unable to remove any of it. She explained that she was unable to see my tubes and ovaries, and explained that the endo was attached to my bowel. Her plan was to put me on Lupron for a year and then do another laparoscopic surgery to remove the endometriosis. I remember the way she rushed me with my list of questions, which seemed a bit concerning. I decided to start researching the medication and Endometriosis myself, which I did not feel that Lupron was the best decision for me. The side effects for that medication were terrifying. 

During my research, I came across a film called “Below the Belt”. They were showing the film in a nearby city one evening, so I asked my Mom to go with me. The film was very educational and I left knowing that I was not alone in this journey. Plus, it was eye-opening for my mother as well. 

 

In the meantime, I found a doctor in a nearby city that performed excision surgeries. I was able to get in with her and she said all the right things to my husband and I. Three months passed by, and during my pre-op appointment with her, she assured me that she was removing all of the endo after I voiced my concern about the possibility of another failed surgery. She was even working on a plan for us to conceive as well. 

 

Surgery #2 came, I was surrounded by my husband, Mom, and Dad. It brought the biggest disappointment. She was unable to remove the endo. Her plan was for me to go through IVF if I wanted to have kids, then find a gastroenterologist to perform a bowel resection, and then come back to her to have the endo excised. I trusted this doctor to help me and I did everything she wanted me to do. I felt let down by the medical community and had no idea if I would ever have the endo removed. My PCP agreed with me and referred me to a gastroenterologist to have a colonoscopy. The next month, I had a colonoscopy, which I learned that I did not have any endometriosis inside my colon, which was the first time in 8 months that I received some sort of good news.

 

After a lot of praying, my husband and I decided that we believed our next step was going to be with the Center for Endometriosis in Atlanta, Georgia. After sending off my medical forms and paperwork, I received a call from Dr. Sinervo. He gave me his opinion over the phone, what his plan would be, and gave me the worst case scenarios. Hearing that you may need a “hysterectomy” left my heart broken, it scared me worse than the bowel resection, but I believed he was the doctor I was going to need. 

 

October 10th, 2023 I met Dr. Sinvero for the first time in the office. He answered every question I had for him and after a painful pelvic exam, he informed me that if I did not have my uterus removed, I would be back in 3 months begging for him to take it. 

October 11th 2023, I walked into Northside Hospital in Atlanta, Georgia with a sense of peace and surrounded by my husband, Mom, and Dad. Before my surgery, Doctor Sinervo prayed with my husband and I. We went over everything and told him we wanted him to make the call once he got inside depending on the condition of my uterus. 

After a 4+ hour surgery, I woke up to find that all of the Endometriosis was excised, my appendix was removed, and I had a hysterectomy leaving only my right ovary. As hard as it was hearing the results, deep down inside I felt like I was finally validated on all the years of pain I experienced. I ended up being diagnosed with adenomyosis and stage 4 endo. My bladder, uterus, and bowels were all stuck together like sandwiches and the endo had damaged my uterus, tubes, left ovary, and appendix. Doctor Sinvero was able to save my right ovary. I am beyond thankful for Dr. Sinervo and his team. He is truly an angel here on Earth because without him I don't know where I would be today. 

 

Today, I am going on 7 months post op from my Excision, Appendectomy, and Hysterectomy. The healing journey has been far from easy. I currently have a cyst on my poor lonely ovary. I am still experiencing pelvic and lower back pain, but it is nothing compared to the pain I was experiencing before. I started Pelvic Floor Therapy in December 2023, which my PT is nothing but amazing. She has listened to me at every appointment, sympathizes with me, and wants nothing but the best for me and my body. I was failed by the medical community for years. I can’t help but think if I was diagnosed with Endo when I was younger instead of being put on birth control, I might still have my reproductive organs. Endometriosis can change your life in a second, can flip your world upside down, and steal hopes/dreams away from you. As I continue to travel down the healing journey, I remind myself that I had to do what was best for my body in hopes for a pain free life ahead. I choose to share my story in hopes that it will help someone out there. We as patients deserve better care from our doctors and I strongly believe if doctors were educated properly on Endometriosis, we wouldn’t have to face life changing decisions or go through multiple surgeries.

 

If you are struggling with Endometriosis, please know that you are not alone. I strongly encourage each person to do your own research, stand up for yourself, help educate your loved ones around you, and always listen to your gut.

To all the Endo Warriors out there, I see you, I hear you, and I sympathize with you. Keep fighting, warrior.

- Brittany