What are your endometriosis symptoms like? I have deep burning pain in my pelvis almost constantly, this is my baseline for pain, I would rate it about a 7.5/10. I also get what I refer to as “the stabbies” which is exactly what it sounds like; the sensation of something stabbing into my lower pelvis region. I experience nausea and vomiting every morning; twice this week I was late because I puked in my hair while I was getting ready for work.
What was your journey to diagnosis like? I was 15 when I first started experiencing severe endometriosis pain; then I described it as a squirrel trying to claw its way out of the right side of my right lower quadrant. Of course my mom took me straight to the ER, where they I assumed I had appendicitis, and sent me to a bigger city hospital. After an ultrasound and monitoring, I was sent home and told to see my family doctor. I was then sent for an endoscopy, colonoscopy, MRI, CT, multiple ultrasounds, and many x-rays over the next year. After my endoscopy, when the gastroenterologist found nothing wrong, he suggested to my mom that my pain was all in my head, as that is what he said it usually is with teenage girls, and if we wanted to get anywhere with this I should have a psychological evaluation, as it was clearly nothing physical. Thankfully, my family doctor was a great advocate and pushed for me to see even more specialists such as an urologist and finally a referral for a laparoscopy with a gynecologist. I felt very scared and had little hope going into the laparoscopy as my gynecologist had told me he likely wouldn’t find anything wrong because I was so young. Coming out of surgery, the nurse in recovery told me that he had found endometriosis, I cried happy tears because I thought that now that I had a diagnosis, things would get better. They did for a bit; I went on to graduate high school, graduate nursing school, and practice as a licensed practical nurse for 5 years before my symptoms began to show their face again. No one had prepared me for it coming back. I was calling in sick for my shifts at the hospital, as I was unable to keep up with my heavy patient load with the amount of pain I was experiencing. My gynecologist told me that if I put a new IUD in, my symptoms would go away again, so I tried that with no avail. My boss told me that I needed to get this dealt with ASAP as she and my coworkers were getting frustrated with me constantly cancelling shifts. I was put on the list to have an laser ablation laparoscopy preformed, as I was not yet educated on excision surgery being the gold standard. My gynecologist told me the chances of him finding it again were slim to none as it was so minimal on my first procedure. My pouch of Douglas was full of endo, as well as my left ovary, bowels and Fallopian tube. At my follow up appointment my gynecologist told me that I was a reminder to him that patients often know their bodies best. I was still experiencing pain and prescribed Visanne. My pain has improved since starting Visanne, and I am now on a wait list for a women’s pelvic pain and endometriosis program.