Endo Wrecked My Life...Until I Advocated for Myself

My periods were always horrible. Migraines, crippling pain and ruined clothes multiple times per month. I was told I had cysts on my ovaries and those were likely rupturing which was the reason I was told I had a 2% of ever having kids. I found out I was pregnant 6 weeks after that particular ER trip. 2 kids later, my periods were worse than they had been before. My OB/GYN put me on birth control to help alleviate the symptoms. My migraines and nausea got worse. I was sick all the time. Another ER trip revealed my right ovary being completed encased in cysts and my cervix had abnormal cells. She said she can do an ablation procedure to slow the uterine bleeding and then remove the uterus, cervix and encased ovary via a laparoscopic method. The day before surgery I was at their office for final paperwork etc., and she said instead of this outpatient procedure, we are flipping this to impatient, still removing the bad organs, but she wanted to take a closer look at everything else while in there. She said we would leave the 1 good ovary so that I didn’t have to be on hormone replacement at 29 years old. I agreed and went ahead with the procedure. She confirmed that there was endometriosis present but it was removed with the uterus and cervix removal. She also saw inflammation on the intestines and said based on my other symptoms, I likely had irritable bowel syndrome.

My surgery was botched

All was well for about 3 years when the pain started again. I went back to her and she suggested that we do exploratory surgery. She would make an incision, look around and then schedule the “real” surgery to fix anything she found 3 months later. This meant 2 large invasive procedures and no guarantee anything would be corrected. At this point, I said I think I want a second opinion. She got mad and said good luck getting your records to get that other opinion since you don’t trust me. She slammed the door as she walked out of the exam room. At that point I contacted an endometriosis specialist at the Cleveland Clinic. I tried to get my records transferred and they mysteriously disappeared. I was able to get all the surgical records from the hospital and sent those. My new OB/GYN ran some tests and reviewed all the records we had. She determined that part of my ovary and fallopian tube that the previously doctor “removed” was still in tact and covered in endometriosis. So, the previous doctor essentially botched my surgery and refused to give up the records. She referred me to an endometriosis excision specialist at Cleveland Clinic, Rebecca Flyckt.

An uphill battle

Flyckt was facing an uphill battle to correct what was botched. This would include 2 additional surgeries to rebuild the vaginal wall where the cervix was hacked at and hid a pocket of endometriosis. In addition, she would excise 30+ sites of endometriosis. She would have to remove the rest of the ovaries and fallopian tubes which would put me into menopause before the age of 40. Hormone replacement therapy was inevitable now to keep the hot flashes and migraines at bay.

Pain and Irritable Bowel Syndrome (IBS) was just a part of my daily life

I got used to them. Flyckt said this was unacceptable and was determined to improve my quality of life. More MRI testing revealed a large endometrioma near my bowels. She believed this to be the cause of my IBS like symptoms. May 2018 a surgical team of leaders in the field sought to remove this large endometrioma and alleviate my symptoms. Little did they know what they were in for. Upon laparoscopic inspection, the MRI failed to reveal that the endometrioma wasn’t just near the bowel walls, it was inside the bowel causing a nearly 100% blockage, which in a couple months would be fatal. On the MRI, it looked like a large ostrich egg within my abdomen. Mid-June 2018 I got a call from Flyckt’s office that I needed to get up there for presurgical testing within the hour and that my surgery was scheduled for 7am the next morning. I scrambled to get ready for what would be the most invasive surgery to date that would change my life.

Still in pain & they couldn’t figure out why

The surgical team of Rebecca Flyckt, Hermann Kessler, and Tommaso Falcone said they would go in and remove the section of bowel where the endometrioma was and reconnect the good sections together. While those areas healed, I would need to have a loop ileostomy. This is where part of your small intestine is pulled through the abdominal wall and everything goes into a bag instead of the large intestine and bowel. There were major complications during surgery which required 3 blood transfusions on top of multiple life saving measures being taken. I spent 2 weeks in patient at Cleveland Clinic after surgery. My white and red blood cell counts were all out of whack. I had 38 staples holding my midline incision together, new loop ileostomy and 7 laparoscopic holes being held together with tape. I was on IV fluids, antibiotics and heparin shots each day. My veins were giving up and collapsing. I ended up getting a PICC line in my arm for blood draws twice each day just to measure levels of everything. I was depressed and didn’t want to continue with anything there. The surgical team kept close tabs on me knowing my body was deeply in shock and likely to not fight off infection or disease. I was still in pain and they couldn’t figure out why. Testing while in patient revealed that where the large intestine and bowel were reconnected, there was a leak. There’s nothing that can be done but wait for the body to heal itself of this leak.

It's been a long recovery

I was told my ileostomy was temporary while my body healed for about 3 months and then it would be reversed. Leak testing still showed a leak at 3 months. My body is apparently averse to healing itself at this point. Leak testing at 5 and 7 months still showed a leak but it was smaller each time. Needless to say, at 8 months post-op from this life saving procedure, my leak is smaller, but still present. I cannot have this ileostomy reversed until the leak is 100% healed and my large intestine can hold normal pressure like everyone else.

Endometriosis has lowered my quality life

It took away reproduction abilities, caused countless hours of pain, countless dollars in medical bills and lowered my quality of life. 1 in 10 women are afflicted with endometriosis and of that group, 1 in 3 has bowel endometriosis. This is often misdiagnosed as IBS and symptoms ignored by doctors for many years. It takes years of advocating for yourself in order to get results and sometimes (like in my case), much damage is done before you get the help you need. Please don’t let your endo story be as long and invasive as mine. Find an expert sooner rather than later.