The Years Leading Up To Diagnosis
As the years passed through high school and college, I continued birth control and continued to gain weight. The summer between my junior and senior years in college (2005), I was able to have the Lap Band surgery to help with weight loss. I initially lost 100 pounds but gained most of it back over the years.
Unrelated Surgery Leads To Endometriosis Discovery
In June 2009, Tim and I were married. We knew we wanted children but wanted to wait a few years so I continued birth control. Unfortunately, I ended up having to have my Lap Band removed due to complications (it had slipped) in June 2012. It was at the time of this surgery that my surgeon asked, “Do you have endometriosis?” I had maybe heard the word before but NOT ONCE had any of my OBGYN/Specialists mentioned it as a possibility! The surgeon said he had seen some bleeding but couldn’t tell if it was endometriosis. or maybe I had recently had a cyst burst. He did not note any of this or take pics. I mentioned it to my OBGYN who didn’t seem too concerned and continued to take birth control. I figured we would try to conceive in a couple of years and cross that bridge when it’s time.
Trying for a baby…but ended up with a huge cyst
Fast forward to July 2013 I took my last birth control pill and we decided to begin trying to conceive. I didn’t have a period right away so in November my OBGYN prescribed Provera to start one. I had a period but had to do another round in March and we added Metformin. Metformin helped a TON and I began to have regular periods. However, by August I was in a lot of pain, waking up in the middle of the night, urinating frequently, and feeling some relief when I could have a bowel movement. I had an ultrasound which showed a 10cm cyst on my ovary. My local OBGYN (Dr. Cunningham in Rolla, MO) referred me to a surgeon, Dr. Levine in St. Louis who, she was confident, is very skilled and would do as much as he could to save the ovary. At my consultation with him, I mentioned the bariatric surgeon questioning an endometriosis diagnosis and Dr. Levine said he would remove the endometriosis if he encountered it.
Long surgery with unexpected turns
I went in for laparoscopic surgery that was supposed to be very routine and quick and ended up with laparoscopic incisions AND a large laparotomy incision. Dr. Levine started out laparoscopic but the adhesions/endometriosis was so bad he had to try again. He said it looked like paint splattered on a wall. Bladder and bowels were attached and it was an endometrioma on my right ovary. I ended up losing the right ovary and tube. At my follow up appointment I asked him about the left ovary and he said it looked normal and healthy. He said that PCOS was probably never even an issue…probably was endometriosis the whole time (another specialist has recently said that he believes I DO have PCOS…so who knows!) .
Dr. Levine told me that our best chances of conceiving naturally would be in the next 18 months but he recommended 6 months of Lupron as he wasn’t confident that he got all of my endometriosis. I researched Lupron and didn’t really like what I saw (still don’t) but I had just had surgery and everyone I talked to convinced me to go ahead with it since we really grew to like and trust Dr. Levine and my OBGYN was also on board. I was lucky and didn’t really have many of the side effects I was expecting; however I did have spotting almost daily.
I know Dr. Levine said he tried to get as much of the endometriosis as he could but was worried some may have been missed. He said he did not recommend another surgery – that I would risk a hysterectomy.