What are your endometriosis symptoms like? 

I’m a 36 year old. I have always had irregular, painful and heavy periods since I began my period when I was 12yrs old. I was nauseous, missed a lot of school and headaches all the time. When brought up to my family doctor at the time; I and my symptoms were dismissed. It wasn’t until 2011, when my husband and I tried to start a family that we couldn’t. We were referred to a Fertility Clinic. We were not prepared for what that actually meant. After several consults and tests, it was decided we’d do an exploratory surgery to see what was going on. During that surgery in 2012 it was found that I had stage 2 endometriosis.

At that point nothing was explained to us regarding what that meant. We were also very new and naïve at the whole process; we trusted our specialist. She recommended we continue with IUl – Intrauterine insemination. After we did 8 double rounds of IUl and all had failed, with the recommendation from our specialist we moved towards IVF – in vitro fertilization. Once again, we did one failed round and the emotional, financial and physical stress we needed to take a break. We continued to try with no luck. We then decided to move forward with another failed round. We did all this within a 4 yr span.

We were then told my egg quality wasn’t any good and We’d need to proceed with a surrogate or an egg donor. We decided on the egg donor. During this whole process, NOTHING was said anymore about my endometriosis! I was still experiencing pain, heavy periods etc. In 2017, I had gone for my annual physical which came back that I had abnormal pre cancerous cells. I was referred to an OBGYN to do a colposcopy. The results then came back again still showing precancerous cells. I was scheduled for a LEEP. This procedure was done in May 2017. During this process our egg donor was going through the process of IVF. One month to the day of my LEEP; my husband and I found out we were expecting! Fast forward to today; we have two beautiful children – 3 yrs old and 2 yrs old. Since having our son, my endometriosis is back with a vengeance!

I was referred to a doctor who specializes in endometriosis involving nerves. After several tests and consults it was determined that my endometriosis is stage 4, I have adenomyosis, deep nerve endometriosis, endometriosis with and around my bowel. This was all determined in Dec 2020 and I would need a full hysterectomy, bowel resection and excision of all endometriosis. My surgery is estimated to be 7.5+ hours and 3-5 days in hospital stay. I have been off work on strong narcotics since Jan 2021. I take hydro morphine 24/7. I’m in consistent pain. I have had 5 surgery dates and all have been cancelled due to COVID, lack of staffing, surgeon schedules not lining up and no hospital stays. I have no quality of life, I’m missing out on time with my babies and I just need help! I understand that there are people in way worse situations but this cannot continue. COVID is serious but peoples lives are serious also. People deserve good quality healthcare. Please help a desperate women, wife, mother, daughter, granddaughter and sister get help! I’m beyond worried about becoming addicted and it affecting our healthcare system more Please help me!!!