Learning to Live Again: Sophia’s Endometriosis Journey

From the start of having my period, I always experienced heavy bleeding and severe pains. This carried on for years, I was constantly visiting the GP about the same issues and would be put on different pain medications and contraceptive pills (Microgynon pill). This continued for years and was never investigated, I kept being told there was nothing that could be done and that it’s normal.

In my second year of university I was just coming off my period when I became so poorly and experiencing excruciating pain for weeks - I was taken to hospital, doctors said they didn’t know what was going on but went ahead and took me in for surgery, only to find out I was bleeding internally from a ruptured cyst. I was told they cleaned everything out and had the Mirena coil put in and told to continue with the same pain medications. I was still struggling on a regular basis with symptoms of severe pains, nausea, dizziness, I would be in so much pain that I fainted.

Fast forward a few years, I moved to a new city because of work. The same symptoms carried on, and I was back again calling the GP for help because I was struggling so much. On one of my appointments, I was seen by a female doctor, and she took the time to sit and really listened to me. She made a referral for me to be seen by a gynaecologist.

In 2021, I had a diagnostic laparoscopic surgery where it was found that I had severe widespread endometriosis and a multi fibroid uterus which was deviated and fixed to the left pelvic side wall. The gynaecologist that carried out the procedure explained that due to the severity of my endometriosis she could not treat me and transferred me to an endometriosis specialist’s gynaecologist. In 2022, under the care of an endometriosis specialist’s doctor, I finally had a diagnosis and treatment plan following the additional an MRI scan. I was also told that my fertility was significantly reduced due to my endometriosis diagnosis.

I was on the waiting list for my endometriosis surgery for over two years - in that time I was on pain management and ovarian suppression treatment, I was given Depo- Provera injection every three months with my symptoms still very bad, they also tried me on medically induced menopause (GnRH agonists) which I had a bad reaction to from the first injection and was hospitalised for it.

I finally had my long-awaited surgery date in May 2024; The surgery I had was a Laparoscopic excision of endometriosis (LEE).

What I was not expecting was that the long-awaited surgery would come with its own complications – At my first surgery the endometriosis team and colorectal team carried out the surgery to remove the endometriosis and also performed a bowel resection, on the part of my bowel where the endometriosis affected, unfortunately something went wrong and I developed an anastomotic leak – what this meant was the part of my bowel where the surgeons had cut out and rejoined came apart, which resulted in me being rushed back into surgery in the middle of the night, because I leaking faeces internally which caused me to have E.coli in my blood, a potentially fatal complication from the first surgery.

After my second surgery, I was still experiencing leaks and issues with my drainage from the surgeries, which then resulted in a third surgery being required for a Hartmann’s procedure for me to have a colostomy bag (stoma).

Everyone’s experiences with endometriosis are different, every woman with this disease is fighting their own individualised battle not knowing what the outcome will be.

-Sophia