Claire’s endometriosis journey

My journey with endometriosis started three and a half years ago, with pain in my right lower side. Given my nursing background, I knew it wasn't my appendix, so my next theory was an ovarian cyst. I attempted to arrange a private ultrasound but the wait was going to be six weeks due to a sonographer being off sick. Though I never needed to be off sick as a result of it, my boss (the ward sister) realised I was still in pain and personally arranged for me to see one of the gynaecologists in the hospital.

A couple of weeks later, I had an internal ultrasound done by a nurse specialist that showed bilateral ovarian cysts of significant size. My consultant decided just to monitor them at the start but to keep an eye on the cysts. Over the space of the following three months, I had about five ultrasounds. It was decided that surgery was needed; an ovarian cystectomy was planned and booked. I was lucky that my surgery date was only cancelled once. In July of the same year, I had my first surgery. After 15 years of nursing, this was my first time in the patient role, which felt strange. I still remember waking up in the recovery room and asking the nurse what was done/how things went. All she would say was that she couldn't read the surgeon's handwriting. I should have figured out then that something wasn't quite right.

If I could get any point across, it would be to be aware of what is normal and not. If your periods are excessively heavy, or if the pain is interfering with your daily life, you should get it checked out.

Back on the day ward, one of the team came out to speak to me. She said that endometriosis had been found and that they were keeping me as an inpatient in order to get an MRI scan. Later on when I got a ward bed, the consultant came to speak to me to say she was handing my care over to another consultant with expertise in endometriosis. I got to see my new consultant the following morning and she explained that I had stage four endometriosis. I admit that my knowledge of endo at that point was pretty limited, but hearing about stage four of anything was scary, and I do remember becoming upset. I was also initially told that my treatment would involve Depo-Provera injections for six months to calm the inflammation. Two days later, I finally got my MRI and went home.

Once I started the injections, the menopause kicked in. The hot flushes were particularly bothersome, so much so that I was put on HRT to manage the symptoms. The pain definitely improved but never really disappeared. I was reviewed regularly as an outpatient and some months later I had a CT colonography that showed that my uterus was fused to my rectum. I was given an appointment with a colorectal surgeon, who works with my gynaecology surgeon when there is potential for a bowel component to the surgery. I was warned of the possibility of needing a temporary stoma if further extensive surgery was required. I had been put on Provera in the meantime. This continued pretty statically for the next two years until this January when the quality of my pain changed, i.e. became sharper. I requested an urgent appointment with my consultant and on ultrasound it was found that my endometrioma had reformed. The decision was made to operate again on the cyst, and I had another laparoscopy this past summer.

It was 16 months ago that I discovered the EAI, on a night when I was in a lot of pain and couldn't sleep. Any reading I had done on endo before this focused on the stages and how they were differentiated. With the EAI I found a group of supportive, knowledgeable women. I discovered the heavy painful periods of my teens and twenties weren't in fact as a result of my being overweight, but as a result of endometriosis. Because I hadn't made a big thing about my symptoms through embarrassment, no one else had either. Through my job I get the chance to speak to a lot of young women, and if I could get any point across it would be to be aware of what is normal and not. If your periods are excessively heavy, or if the pain is interfering with your daily life, you should get it checked out.

Through the EAI, I've had the opportunity to speak on Raidió na Gaeltachta on International Endometriosis Day on the subject, and as an Irish speaker I was proud to see that the EAI had produced an Irish language version of their leaflet.