I Have Endometriosis & Had To Quit My Job While Waiting For Treatment

Photographed by Laura Chen.
34-year-old Sophia* lives just outside of London and has been living with endometriosis for a decade. She describes living with heavy bleeding and pain which, she says, is “worse than being in labour” and she would know as a mother of one. Here, she tells R29 UK how the waiting times for gynaecology is affecting her health, her fertility, and her sense of self as part of our exclusive investigation into growing waits. 
As of January 2022 over 180,000 women are waiting over 18 weeks (the NHS standard) from referral to treatment in gynaecology – that was a 383% increase on 2020.
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“I had my first daughter in 2017. When my periods later returned, my pain began to get worse. This progressed quickly and soon I was in debilitating pain. It felt worse than labour. I went to the GP, who sent me away with painkillers without referring me for any scans.”
“I started trying for another child after the first lockdown. Every month that I didn’t become pregnant, I felt like I wasn’t being helped for my pain and I knew something was going on. I found a group online called Nancy’s Nook, which had a list of endometriosis specialists. I paid privately to go for a scan in February 2020, and saw a specialist who confirmed that I had adenomyosis and endometriosis,” Sophia explains.   
Over the years, Sophia says she has spent more than £1,500 on private medical appointments. Before she was able to get an NHS referral for excision surgery, she was considering having it done privately but couldn’t find the funds for the procedure which would have cost her between £10,000 and £15,000.
“I noticed that one of the private specialists also did NHS work, so I paid £400 for a private appointment and asked to be put on the NHS waiting list, as well as the cancellation list. I waited for over a year in which time I had to give up my job because of the pain. In November 2021, I finally had the surgery, which found and removed a large endometrial polyp as well as excision of endometriosis.” 
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“The polyp was causing me so much pain on top of the endometriosis, and I would never have been able to get pregnant without it being removed,” Sophia continues. “Mentally I didn’t understand why I wasn’t getting pregnant, and now I feel like I have wasted nearly two years of my fertility, I’ve had to give up my job because of pain, and I felt like I had no control over the situation. Despite this surgery, I was still in a lot of pain.”  
“I was told that I would find out if the biopsy of the polyp was anything to worry about in two weeks. Nearly 11 weeks later, I got a phone call to say they found abnormal cells and would need another operation. For a few weeks I thought I had cancer. As I wanted another child, I was told to focus on getting pregnant, but my pain wasn’t addressed, nor the inconsistent diagnosis from the NHS. I’ve now been referred to a fertility clinic on the NHS, with an appointment date in August 2022.”
“I felt at a loss, so I paid for another private appointment in February 2022, in the hope that I could discuss my fertility and my pain,” Sophia says. “The specialist told me I had a haemorrhaged cyst on an ovary, which was causing the pain. I was again advised to focus on getting pregnant, and to get back in touch with the pain clinic, who I had seen in late 2020. They told me to take morphine but with a young daughter to look after, this is not a long-term solution.” 
Sophia thinks more needs to be done. "I want to tell the government that we are human beings. We are people that also contribute to the economy by working hard and paying taxes and raising children. Endometriosis – like other gynaecological conditions – affects our ability to do that. This isn't just our problem, it impacts society too."

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