The pain was so incredible, I didn't think I'd make it home conscious. | Endometriosis UK

The pain was so incredible, I didn't think I'd make it home conscious.

  • Thursday, March 09, 2017

Today's case study focuses on the years of misdiagnosis Marie has had to face and the huge impact this has had on her life. She is 26 and lives in Essex.   

 2009 was a pivotal year for me. I had just started university, I'd moved out of my childhood home, and I first started noticing the pain.  

 It felt like blisters. During one of several A&E visits that year, I was told I had Crohns Disease. A number of different treatments all ruled that out. A year later I was told I had IBS and that I was an "anxious person" even though the consultant had never met me before this meeting. I was told to go away and take some tablets. 

I was back again in 2012, in agony and was given another endoscopy which showed nothing. But things were getting worse. I remember sitting at the bus stop going home from university in tears because the pain was so incredible I didn't think I'd make it home conscious. Again, I was told this was IBS. I'd lost a year of university already. 

In 2014, I went to my local NHS walk-in centre after fainting on the train home from work. The GP I saw was concerned and sent me to the OB-Gyn department at the hospital. I spent hours in A&E, throwing up, before eventually getting a bed on the Gynae ward at 3am. I sobbed as my dad walked out of the doors. 

The doctor I saw was insistent I was constipated. I begged them to do an ultrasound, which they did the next day, and lo-and-behold, a 5cm cyst on my left ovary. 

I was assigned to a Gynae consultant, who over the next two years, would reluctantly see me every month or so, tell me I didn't have endometriosis, find yet another cyst, and insist that I didn't need surgery. 

I got a second opinion last year resulting in a laparoscopy which gave me a diagnosis of severe endometriosis. I was strangely relieved. I had been told my pain was made up for seven years, yet they found I had adhesions on my left ovary, and my bladder and uterus were stuck together via my Pouch of Douglas. 

 That was in October last year. The pain is back. I've been told to have children in the next 5 years or to have Prostrap, a drug to put me into the medical menopause in the hope of halting the endometriosis. I'm now being referred to a specialist in Birmingham, who I am hoping can excise all endometriosis. 

 All it would have taken was just one person to believe me. One person. I've lost 7 years to pain. 

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