Trust delayed diagnosis and follow up of endometriosis

What happened

Mrs D went to the gynaecology department at the Trust in summer 2010 for bleeding between periods. She went back the next year because of severe pain. The referral from her GP specifically suggested that the diagnosis might be endometriosis.

Gynaecology clinic staff saw Mrs D in early autumn 2011, by which time she was actively trying to conceive. Staff decided that her diagnosis was more likely to be dysmenorrhoea than endometriosis. The Trust gave Mrs D a six–month follow–up appointment.

Mrs D's GP wrote again to the Trust in early 2012 asking for the follow–up appointment to be brought forward because of Mrs D's increasing pain. At the next appointment, Trust staff said that endometriosis was a possible diagnosis and arranged for a diagnostic laparoscopy with dye testing, to check Mrs D's fallopian tubes.

Another appointment had to be cancelled because Mrs D was pregnant. Sadly, she miscarried later the same month. The next month, her GP tried to rebook the laparoscopy. Instead, Trust staff booked a gynaecology appointment, at which Mrs D agreed that she would 'wait and see' how things progressed. She had a

six–month follow–up appointment.

However, in autumn 2012 her GP again wrote to request an earlier appointment due to worsening pain. Mrs D had an appointment in winter 2012, and the consultant again noted findings suggestive of endometriosis. Mrs D had a laparoscopy in spring 2013 that confirmed significant endometriosis and cysts on her left ovary.

The Trust referred Mrs D to a specialist unit at a different trust. Clinicians at this trust removed the cysts in autumn 2013, but they could not remove the endometriosis as it was too severe.

A consultant at the specialist unit told Mrs D that she needed a hysterectomy. If she wanted to have a family, she would probably need IVF because, although there was a chance she would conceive normally, her endometriosis was very developed and would grow further and cause more pain.

Mrs D was referred for IVF but because of the policy in place where she lived, IVF was not at that time funded and she had to pay for it. The IVF was successful and Mrs D became pregnant in 2014.

What we found

We partly upheld this complaint. There were failings in some aspects of Mrs D's treatment that delayed her diagnosis of endometriosis. In particular, established clinical practice was to follow up cases of this type within three months not six months, which had repeatedly happened in this case.

Mrs D was left with severe pain for longer than might have been the case if treatment had been provided earlier. However, on the balance of probabilities, we did not think that her ability to conceive was likely to have been significantly affected.

Putting it right

The Trust apologised to Mrs D for failings in her care and paid her £750 in acknowledgement of her pain. The Trust also prepared an action plan to reflect on learning from this case.