“Every step of this painful journey I’ve had to convince everyone how much pain I was in.”
My experience
I’d been experiencing endometriosis pains for three years, but was not officially diagnosed with endometriosis. About 3 years ago I noticed my periods, which had also been painful, were getting increasingly more painful. I started becoming aware of a sharp jabbing pain right by my colon and feeling tender and bloated around my tailbone and lower pelvis area. My periods had become so painful that I was missing 1-2 days of work a month. Painkillers sometimes dulled the pain, but usually they didn’t do much.
I had been in to see my GP about possibly having a cyst because I had felt a lump in my pelvis below my hip bone. My GP wasn’t convinced and said she said she couldn’t feel anything on a pelvic exam. I finally convinced her to let me get an ultrasound just to make sure. The ultrasound showed a 4x5 cm cyst by my left ovary. My GP scheduled me for a scan in four weeks’ time.
However, before I had my scan, I awoke one morning in severe pain. My husband called 999, but despite the obvious pain I was in, the medics still seemed unconvinced. I was eventually taken to hospital where I developed a very high fever and a very bloated stomach. However, I still waited for three days before eventually being given a scan, which showed an alarming amount of fluid in my abdomen. I was quickly rushed into surgery.
Post-surgery I was told I did have endometriosis and that an endometrioma had ruptured in my left ovary and had attracted a fluid to it. This fluid had become infected and was causing my high fever and pain.
How I felt finally getting officially diagnosed with endometriosis
I was a bit relieved to finally be diagnosed, but it was a scary time because I didn’t feel I was getting much support or answers from the medical community. I also felt frustrated that I wasn’t officially diagnosed sooner. I felt like I was ahead of the doctors by two or three years.
My recovery was very slow following the surgery due to damaged caused by the ruptured endometrioma and the infection. I could have been spared much pain and fear, and could have saved the NHS a lot of money, if I had been diagnosed much quicker.
Every step of this painful journey I’ve had to convince everyone how much pain I was in.
It’s really important to not be put off by doctors who don’t think your endometriosis is something to be aggressive about. You need to be aggressive about taking care of yourself by demanding ultrasounds and appointments with a gynecologist.
- Lauren
Read Lauren's story about how she managed her recovery from her second endometriosis surgery
