My Endo Story 

I always had painful periods from the very start and quickly I was making GP appointments, as I couldn’t cope with the pain every month. I was told to go on the pill and that this was all completely normal.

I took the pill for about 10 years and then my pain started to get worse and worse, feeling like I was being stabbed in the pelvis. I decided to come off the pill. After going to the doctors about it multiple times, again I was told to go on birth control. I tried some alternatives, but nothing helped the chronic pain I was enduring. I gave in and went back on birth control.

Afterwards there were still times when I called NHS 111 and was told to go to A&E because of my pain. Some days I could barely stand up straight with the pain and would curl in a ball on the floor crying.

Finally, I got a GP who listened to me and I told her about my own research through 'Endometriosis UK' and how I thought it was endometriosis. She ordered a pelvic ultrasound and they found an endometrioma (cyst) in my left ovary which was 5cm and a smaller one in the right ovary. This was in January 2020 and it felt a relief to actually find something and have reason for the pain.

Then Covid hit and the progress that had been made for a referral to a gynaecologist stopped. My appointments all got cancelled. I could only get ultrasounds every 3/4 months to check the endometriomas, which kept growing to the size of 7cm (the size of a peach).

A friend who has endometriosis told me about a Facebook group, 'Nancy's Nook', which had research and lists of specialists. I contacted Shaheen Khazali and paid to have a private consultation in October 2020. He was truly amazing! I found someone that listened, empathised and could help me after all the years of agony. He told me it was clear I had severe endometriosis and would need surgery. I couldn’t afford private surgery and was put on his NHS surgery waiting list which was around 9-12 months long. Finally though I was getting somewhere! 

I had laprascopic surgery in June 2021 by Mr Khazali. The surgery took several hours for him to excise the endometriosis which was found on the uterus, bowel, rectovaginal space, pelvic wall, abdominal wall, including pelvic organs fused together and removing the 7cm cyst in my ovary.

The surgery changed my life. I no longer have to carry multiple types of painkillers around with me and worry about not being able to do something because the pain would be too much. I also don’t need to alter my hormones by taking multiple types of birth control all at the same time.

I worry about it coming back and if I'll need more surgery in the future because there is no cure. 

But for now, I will enjoy being pain free and will share my story with others to raise awareness about this debilitating condition. 

It affects 1 in 10 women and those assigned female at birth and takes on average 8 years to diagnose. This is too long!