My diagnosis took 9 months - or 20 years, depending on when you start counting! | Endometriosis UK

My diagnosis took 9 months - or 20 years, depending on when you start counting!

  • Tuesday, March 07, 2017

Laura is 35 and lives in Bristol. Laura was repeatedly told she could not have endometriosis, despite presenting with many of the symptoms. Endometriosis has affected her education and work life and she feels her life is still on hold.   

My periods were crippling when they started aged 14. Each month meant time off school; successive GPs just recommended paracetemol, which never helped. No-one ever mentioned endometriosis; painful periods were something to be endured. 

I started the pill aged 19 and it helped my periods, so I stayed on it until I was 33 in summer 2015. Sadly it had masked a disease that was destroying my insides. 

A couple of months later, the crippling pain had returned, and I was experiencing bleeding from my back passage. I felt increasingly exhausted and unwell. A quick internet search of my symptoms suggested recto-vaginal endometriosis. I found articles on endometriosis and gynaecology websites, and dozens of women's testimonies, describing my symptoms. All of the back pain, severe PMT, and constipation that I'd suffered for years suddenly all made sense!  

Between November 2015 and May 2016 I saw my GP numerous times, had blood tests, an ultrasound, colonoscopies. It was clear from what I'd read that my symptoms weren't rare, and that only a laparoscopy can confirm endometriosis, but I was repeatedly told no endometriosis was found from these procedures, plus "It can't be endometriosis: you don't have pain with sex", "It must be blood from haemorrhoids", "Just go back on the pill / on the coil".  

By February 2016 I’d had to leave my job because I needed two weeks off sick every month. As I had no diagnosis yet, neither my Income Protection Insurance nor the Department of Work and Pensions would pay benefits. I got into more and more debt. 

I finally had an investigatory laparoscopy in June 2016, confirming severe recto-vaginal endometriosis that's infiltrated my bowel. Triumph! I KNEW that I'd known my own body! Yet diagnosis took 9 months - or 20 years, depending on when you start counting. 

My insurance eventually paid out, but the DWP still deemed me fit for work. Seven months on I'm now waiting for further surgery to excise the endometriosis, but both a bowel surgeon and gynaecologist are needed, making scheduling difficult. My symptoms grow ever-worse and I’m needing 12-18 hours’ sleep most nights. My life remains on hold. 

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