Endometriosis

What to expect from your first appointment

Before your first appointment, you may be sent a British Society for Gynaecological Endoscopy (BSGE) questionnaire over email from the administrative team, which explores your symptoms and any treatments you may have already tried. It is important that you complete and return this prior to your first appointment in the service. If this is not completed, it could delay the scheduling of this appointment.

Your first appointment will be with a Clinical Nurse Specialist (CNS). The CNS will take a detailed history, discuss your symptoms and quality of life and explore available treatment options with you.

Expected waiting times

The demand for endometriosis care is high, and waiting times can vary. The average waiting time for a first appointment is currently around 40 weeks. We are working to reduce this wait time.

The next steps

After your CNS appointment, the medical team will review the appointment and plan made by the CNS to help arrange your next steps. You may not be contacted as part of this review. However, it may may include another appointment, further investigations and tests, discussion of your case at a multi-disciplinary meeting (MDT) amongst other options. All next steps are aimed at determining the best possible treatment plan for you.

Booking system

We book appointments using a six-week scheduling system. This means that we try to book your appointment six weeks before the date you are due to be seen, aligning your appointment with your clinical prioritisation. Please note that this is not always possible due to our long waiting list.

Surgery

Should you require surgery, you will be placed on a surgical waiting list. All patients on this list will be scheduled for a pre-operative assessment prior to surgery. Please note that undergoing a pre-assessment does not necessarily indicate an imminent surgery date. In some cases, multiple assessments may be required to ensure your information remains up to date.

Waiting times for surgery depend on the complexity of the procedure required and theatre availability. For more complex surgeries, coordination with other specialists may be necessary, which could result in longer wait times.

We will contact you via phone to offer surgical dates and aim to provide at least three weeks’ notice.

Should your symptoms worsen whilst you are waiting for your appointment, please contact your GP or, in urgent circumstances, call 111, attend Accident and Emergency or call 999.  

For further details of surgical preparation, please visit here.

Patient Initiated Follow Up (PIFU)

As part of your care pathway, your clinician may place you on a system known as Patient Initiated Follow Up (PIFU). Under this arrangement, follow-up appointments are not routinely scheduled in advance. Instead, you are encouraged to contact the service to request an appointment should your symptoms change or if you feel you require further clinical input.

This approach is designed to provide timely and appropriate care tailored to your individual needs. Patients are offered a time limited window in which to arrange follow up appointments, at the completion of which they are discharged.

These include:

• Expectant treatment: If symptoms are very mild of if the menopause is approaching, this option may be suitable. Alternatively treatment with pain-killers (analgesics e.g. mefenamic acid) may be recommended.
• Medical treatment
• Surgical treatment
• Alternative therapies: There are no clinical trials reporting the efficacy of complementary therapies as a treatment of endometriosis. However, options include acupuncture, aromatherapy, Chinese or western herbs, homeopathy, reflexology, naturopathy, reiki and osteopathy. These may lead to an improvement in pain symptoms.

Sometimes due to the chronic nature of endometriosis, the pain does not fully recede even after the condition has been fully excised. This has been proven by well-conducted randomised controlled trials and other studies. In such clinical situations, our specialist pain management team offer an excellent pain management service.

The British Society of Gynaecological Endoscopy (BSGE) has recently set up accredited centres for the laparoscopic treatment of advanced endometriosis to enable high standards of care to be delivered to women with endometriosis. We have recently applied to be an accredited centre. In line with these requirements we run a nurse-led follow up service to audit and assess our outcomes of surgery.

In summary we offer an integrated service provided by a multidisciplinary team comprising of gynaecologists and nurse specialists in the first instance when a decision about treatment choices is discussed and decided upon. Where the condition is severe, joint surgery is carried out with laparoscopic bowel surgeons and/or urologists. There is also specialist input by the gastroenterology team where necessary. At follow up residual pain is treated within the pain management service. There is nurse-led follow up clinic to enable long-term outcomes to be assessed.

We participate in the national database to contribute to the pool of information with regards the laparoscopic surgical treatment and follow up of patients with severe and recto-vaginal endometriosis. The information you provide is confidential. The data is stored in accordance with data protection legislation and entered onto a central database together with the results of clinical examination and any tests that you may have.

The findings and results of any surgical intervention that you may have will be recorded and assessed, as will any responses to follow-up questionnaires. These questionnaires are emailed but can be sent out by post if you prefer. The data will help inform best treatments in the future.