A Whistle-Stop Tour on Endometriosis – What is it? Why litigation occurs? What to do?

By Mr Timothy Hookway, Consultant Obstetrician and Gynaecologist

Endometriosis is a very common gynaecological condition – typically affecting 1 in 10 women. Its cause is unknown, and it is a condition where cells that behave like the endometrium (lining of the womb) lie outside of the uterus.

It can be asymptomatic, but often causes issues with pain – on intercourse, during periods, whilst opening bowels and passing urine. It can progress to chronic pain that is unrelated to the menstrual cycle. It can cause problems with fertility – by affecting the fallopian tubes resulting in loss of function. In addition, ovarian reserve can be affected – either by forming ovarian cysts (endometriomas) or by aggressive surgical treatment of endometriosis.

Women may complain of pain – the symptoms are often non-specific, however when certain symptoms (painful sex, painful periods, pain on opening bowels during menstruation) occur together, then the likelihood of endometriosis is increased.

Delays in diagnosis are common – the typical time from onset of symptoms to diagnosis in the UK is 7-8 years and thus endometriosis most commonly presents in women in their late 20s and early 30s – some of whom present due to experiencing difficulties with fertility.

Some women may present with an abdominal mass and pressure symptoms – caused by an ovarian cyst containing endometriosis (an endometrioma), and severe cases affecting the urinary and gastrointestinal tract can cause symptoms such as blood in the urine or stool. If the ureters (tubes that carry urine from the kidney to the bladder) are affected then this case result in permanent loss of kidney function.

When performing surgery for endometriosis, the disease is often divided into superficial disease, ovarian/tubal disease, deep disease (infiltrating into bladder or rectum) and extra-pelvic disease (such as appendix or diaphragm).

Deep disease can invade the bladder anteriorly, the ureters laterally and the rectum posteriorly. The BSGE (British Society for Gynaecological Endoscopy) runs an accreditation programme – effectively licensing specialist centres to treat deeply infiltrating disease. Each centre has to undergo an annual accreditation process for quality assurance.

Endometriosis is a benign (non cancerous) condition. Treatment, therefore, should be individualised and tailored to the needs of the individual. Simple measures such as reassurance, lifestyle modifications and pain relief are often effective. Hormonal treatment can be given but also has a contraceptive effect and so treatment in the woman who is trying to become pregnant is inappropriate. Injections can be used to induce the menopause – these can be used pre-surgery to reduce the volume of disease.

Surgery is often performed laparoscopically (keyhole surgery) and is rarely performed via laparotomy (open surgery). There is a growing interest in the use of robotic surgery for complex endometriosis. Surgical treatment involves removing or destroying endometriosis deposits. In many cases there is a balance between treating the disease sufficiently for symptom control, without compromising fertility. If there is extensive tubal damage, then removal of blocked fallopian tubes can improve the outcome of fertility treatment.

For deep infiltrating disease it is often performed as a ‘two stage’ procedure – with an initial treatment of mild/moderate disease and a second procedure to address the deeper components – division of adhesions, dissection of the deep pelvic spaces and excision of nodules. These may be conducted as joint procedures with colorectal or urological support. Such procedures can result in voiding difficulties and bowel dysfunction.

Complications can be devastating – leaking of bowel contents from anastomosis sites, fistula, injury to surrounding structures and ureteric strictures can all require further treatment, and may result in new symptoms with an equal or greater effect on quality of life.

Ultimately, some patients will elect to undergo a pelvic clearance – removal of uterus, cervix, fallopian tubes and ovaries. In the case of a hysterectomy, the ovaries should be removed, otherwise the risk of recurrence of pain and other symptoms is high.

Why does litigation arise in endometriosis?

Delays in diagnosis are common – symptoms can be ignored by patients and doctors alike. A failure to treat can result in long term pain and loss of amenity. Delays in treatment can lead to a loss of kidney function.

Surgical treatment should be performed by dedicated specialists – lack of appropriate treatment by non-experts can lead to litigation. There is a balance to be struck between adequately treating disease (under-treatment can lead to progression and subsequently more complicated surgery in the future) and preventing loss of ovarian reserve from aggressive surgery (which can lead to premature menopause and infertility).

The nature of endometriosis means that surgical treatment is challenging, and naturally will lead to a higher rate of complications. Intra-operative injury to the urinary tract or bowel is not negligence per se, however if these were as a result of poor surgical technique, overtreatment or aggressive use of energy devices then they may be regarded as negligent. Where injuries are un-diagnosed and thus present late with more severe consequences, a claim may arise. In general terms, a patient should be improving on a day by day basis following surgery – if this is not the case then cross-sectional imaging and careful clinical assessment is required.

Laparoscopy and minimal access techniques often result in short hospital stays. Complications will often occur 3-7 days post operatively when the patient is at home. Patients should therefore be given advice and contact details so that they can report worrying symptoms, with quick access to gynaecological teams in case of any concern.

Endometriosis is a progressive, but benign, condition. Treatment therefore should be tailored to the individual and thus inappropriate treatment for the patient could lead to litigation. Complications arising from aggressive excision of deep disease in a relatively asymptomatic patient who requires assisted reproductive treatment anyway would be a cause of litigation.

The ‘ideal’ patient journey

The NICE guidance for endometriosis, published in 2018, clearly defines how services should be organised. When presenting with symptoms of endometriosis, a woman should be consulted by a specialist gynaecologist with an interest in endometriosis. Imaging (predominantly ultrasound) and clinical examination should be performed, and treatment discussed which would include medical and surgical options. If the woman trying to conceive, then medical treatment is inadvisable and surgery should be offered.

If endometriomas or evidence of deep infiltrating disease is suggested on ultrasound, the investigation should extend to the ureters and kidney – failure to do so may result in the undetected loss of kidney function.

Surgery is commonly performed by general gynaecologists, but women should be referred to a specialist multi-disciplinary centre for surgery if severe disease is expected or encountered. Many centres perform a 2 stage procedure – with an initial laparoscopy to excise mild/moderate disease before further counselling and down-regulation with hormonal treatment prior to a second procedure to address the deep disease. These procedures may be performed jointly with colorectal surgeons or urologists – which will reduce the chance of litigation in the case of injury.

Part of the accreditation process requires submission of an ‘exemplar video’ demonstrating the techniques employed in each unit. Many surgeons now create digital recordings of surgery which may then demonstrate appropriate technique and demonstrate that adequate steps were followed to protect surrounding structures. Conversely, such recordings, if admitted in evidence, may demonstrate surgical negligence – notoriously difficult to prove when the Court has the surgeon’s operation note alone.

Perhaps therefore, if digital video recording becomes routine, and the videos submitted in evidence, the role of the Expert Witness may evolve into one similar to that of football’s Video Assistant Referee!

About the Author:

Mr Tim Hookway is a Consultant Obstetrician and Gynaecologist, and the Director of Medical Education at University Hospitals Plymouth where he established a nationally accredited specialist centre for the treatment of endometriosis. He is experienced in open, laparoscopic and robotic gynaecological surgery as well as the management of labour and childbirth.

He qualified from the University of London and completed postgraduate training in London, Surrey and Wessex, completing a fellowship in complex laparoscopic surgery in Winchester and Southampton. His areas of special interest include:

  • Gynaecological surgery
  • Gynaecological cancer
  • Endometriosis
  • Intraoperative injuries
  • Minimally invasive surgery
  • Consent
  • Diagnostic and treatment delays leading to poor outcomes

Mr Hookway can be contacted for all medico-legal work and to request his CV at timhookway@inneg.co.uk

Request Mr Hookway’s CV & Terms